Well early days either way...
I just wanted to quickly touch base and let you know that I am doing ok so far. I have NOT yet managed to get a Paleo breakfast and have had cereal two mornings in a row but the rest of it is going well. The grocery order arrives this afternoon so I will have more choices then!
FibroFacioGal (my old mate whose blog is really worth a read) commented on my blog and asked what I'm going to do with myself and my new found education once I finish this Masters. I'm not sure everyone knows but I have been doing a Masters of Conflict and Dispute Resolution and I should be finished early in the new year. This very question is the fuel of much intense self-examination and thought. My Professor at the uni is trying to persuade me to do a PhD and has a study plan all worked out for me. She has given me some work as a Research Assistant (which I can do at home, in bed, lying down... nice work if you can get it eh?) and the project I am working on is a pilot... the Professor has suggested that when I am done with the Masters I could carry on with the extension of the pilot study we are working on at the moment and do a nation-wide study of the same issue. It's pretty interesting stuff - we are researching conflict between graduate students and their PhD supervisors. Quite possibly I could get a scholarship and some research funding to continue this study and the Professor would help me get it all up and running.
As part of my course I have done what I need to do to become accredited as a Mediator and as a Conflict Coach so if I were going to go back into the mainstream workforce I would probably be looking for something in one of those areas... apparently Family Mediation is a growth area and I only need another course or two to get accredited in that too. As things stand at the moment I am not really fit enough to return full-time to the workforce and I already have some part-time work so I am pretty happy with where that all is for now. Strangely the recuperative effects of not working make me feel almost well enough to work but time and again I find that when I take on a project here at home it knocks me back down again so much that for every hour I spend doing something I need three hours of resting to recover and I'm likely to feel lousy for a day or two!
I just had a call from The Boy who is working and taking care of himself; he's doing pretty damn well for a nineteen year old! We had a nice long chat. The shopping order arrived with all my new veggies and stuff - I unpacked as much as I could before pooping out. Off to pick up TLOML from her work in about half an hour... Life goes on... with or without the diet...
Showing posts with label FMS. Show all posts
Showing posts with label FMS. Show all posts
Wednesday, 28 November 2012
Monday, 18 June 2012
Musings on life, Herbert, and blogging
It's some sort of a cycle.
I don't blog, then I feel guilty about not blogging, then I think I have nothing to say and why would someone want to read my drivel, so I don't blog...
I want to talk about all kinds of things but some of them are minutia and some of them might be too personal or might make me look foolish - so I don't write.
There are lots of great excuses - I am busy studying (I have received Distinctions for the first two subjects I have finished), I am busy living (TLOML and the doggers absorb my time), I'm not in great health (when I crash I crash and I just want to let my mind run free in an effort to forget my body is actually still part of me) but none of them is a good enough reason not to write.
In 10 days I will tick over into my 50's and I can't believe it. In so many ways I'm so unchanged from the child I was. I'm still homesick for my Mum, though she has been dead nearly four years. I'm still socially anxious and I still never feel like I fit in. I still feel like an awkward misfit who doesn't quite get anything right in this world.
A couple of days ago I went to a memorial service with TLOML. It was for a woman in her early 50's who died suddenly of a brain aneurysm. A few years back I lost a very close friend like that, she was only 44 and it was a devastating shock. The service was on the beach at sunset and there were lots of people in attendance. The clothing was casual and colourful. Lots of people were barefooted. The local a capella choir, many of whom were close friends of the woman, sung. When darkness fell a large paper heart was set alight, big paper lanterns were released - rising towards the stars on the power of their flames, and tiny boats with candles were lit and floated into the sea, it was beautiful. Although I had never met the woman, she and her partner having been overseas since I moved up here, I heard stories of how she had touched people and the causes she had fought for. More than anything I heard stories of the bond she and her partner shared, it seems they were truly soul mates. Although I was a stranger, there as a sign of support to TLOML and her friends, some of whom were very close to the woman, I was deeply touched.
There is no justice in this world. Miserly, miserable people live long unproductive lives making others unhappy and kind, gentle souls can be snatched away without time to say goodbye. People in horrid relationships become elderly being rude and unkind to each other and someone else loses their soul mate in early middle age. There is no rhyme or reason, no sense, no logic, Charles Manson grows old in gaol while Princess Diana, who worked so hard for so many valuable causes, is killed at 36.
I don't understand Herbert. It just is.
Starting tomorrow I have a three day workshop at the university. That will probably knock my body around a bit so the weekend will be at least partially dedicated to recovery. I'm in recovery today too because yesterday I started washing windows. The Actress, The Percussionist and their daughter are coming to visit to share my birthday. I'm so pleased they are coming and I can't wait to see them. So TLOML and I need to get the house ready and washing the windows is one of jobs I have decided to tackle. I like doing things where it makes a big difference, where you can see the result of your labour. But I pay. I pay dearly every time I throw myself into a task. Last week I did a little car maintenance including flushing the radiator and was sore for a couple of days. Washing the dogs did me in too. I don't care though. I would rather keep doing things and know I need a couple of days to recover than not be doing stuff!
On the home front everything is going well. I miss The Boy though he is doing well in Sydney and is working hard. The dogs are terrific though Frizby's separation anxiety is a bit of an issue. Now if I go for a swim she keeps swimming out to me. TLOML and I had a swim the other day and Frizzle was exhausted from swimming out to us every time we took her back to the beach. (Hence why I was bathing the dogs!) The nights are quite cool here at the moment but the days are beautiful. Sunny and warm and sparkling Especially through the clean windows!!!
I don't blog, then I feel guilty about not blogging, then I think I have nothing to say and why would someone want to read my drivel, so I don't blog...
I want to talk about all kinds of things but some of them are minutia and some of them might be too personal or might make me look foolish - so I don't write.
There are lots of great excuses - I am busy studying (I have received Distinctions for the first two subjects I have finished), I am busy living (TLOML and the doggers absorb my time), I'm not in great health (when I crash I crash and I just want to let my mind run free in an effort to forget my body is actually still part of me) but none of them is a good enough reason not to write.
In 10 days I will tick over into my 50's and I can't believe it. In so many ways I'm so unchanged from the child I was. I'm still homesick for my Mum, though she has been dead nearly four years. I'm still socially anxious and I still never feel like I fit in. I still feel like an awkward misfit who doesn't quite get anything right in this world.
A couple of days ago I went to a memorial service with TLOML. It was for a woman in her early 50's who died suddenly of a brain aneurysm. A few years back I lost a very close friend like that, she was only 44 and it was a devastating shock. The service was on the beach at sunset and there were lots of people in attendance. The clothing was casual and colourful. Lots of people were barefooted. The local a capella choir, many of whom were close friends of the woman, sung. When darkness fell a large paper heart was set alight, big paper lanterns were released - rising towards the stars on the power of their flames, and tiny boats with candles were lit and floated into the sea, it was beautiful. Although I had never met the woman, she and her partner having been overseas since I moved up here, I heard stories of how she had touched people and the causes she had fought for. More than anything I heard stories of the bond she and her partner shared, it seems they were truly soul mates. Although I was a stranger, there as a sign of support to TLOML and her friends, some of whom were very close to the woman, I was deeply touched.
There is no justice in this world. Miserly, miserable people live long unproductive lives making others unhappy and kind, gentle souls can be snatched away without time to say goodbye. People in horrid relationships become elderly being rude and unkind to each other and someone else loses their soul mate in early middle age. There is no rhyme or reason, no sense, no logic, Charles Manson grows old in gaol while Princess Diana, who worked so hard for so many valuable causes, is killed at 36.
I don't understand Herbert. It just is.
Starting tomorrow I have a three day workshop at the university. That will probably knock my body around a bit so the weekend will be at least partially dedicated to recovery. I'm in recovery today too because yesterday I started washing windows. The Actress, The Percussionist and their daughter are coming to visit to share my birthday. I'm so pleased they are coming and I can't wait to see them. So TLOML and I need to get the house ready and washing the windows is one of jobs I have decided to tackle. I like doing things where it makes a big difference, where you can see the result of your labour. But I pay. I pay dearly every time I throw myself into a task. Last week I did a little car maintenance including flushing the radiator and was sore for a couple of days. Washing the dogs did me in too. I don't care though. I would rather keep doing things and know I need a couple of days to recover than not be doing stuff!
On the home front everything is going well. I miss The Boy though he is doing well in Sydney and is working hard. The dogs are terrific though Frizby's separation anxiety is a bit of an issue. Now if I go for a swim she keeps swimming out to me. TLOML and I had a swim the other day and Frizzle was exhausted from swimming out to us every time we took her back to the beach. (Hence why I was bathing the dogs!) The nights are quite cool here at the moment but the days are beautiful. Sunny and warm and sparkling Especially through the clean windows!!!
Wednesday, 2 May 2012
Screwed up is NORMAL
If you meet someone who appears completely well adjusted they are either repressed or false... somewhere, in some way, we are all screwed up. I used to think I was pretty well adjusted but the older, and more self aware, I have become the more I realize that I was just glossing over my eccentricities, phobias, and sensitivities. I'm nearly a basket case if you really catalog my oddities! But so is everyone else!
I am frightened of flying things - can't handle them being too close to me - is this because of my brother's 47 budgerigars (parakeets) that used to fly free through our rumpus room?
I have some level of separation anxiety, ok quite a high level... is this because my dad left when I was nearly 6? I suffered horrific homesickness as a kid - Dad said it was because I was too close to my mother - but I had an overwhelming fear of something terrible happening when I wasn't there - maybe I was just an incurable sticky beak or maybe it was a control issue?
I'm thingy about my things. Mum used to call me "Black Jed" and said "Nothing comes between Black Jed and what's hissun." -- I have no idea where she got that saying, although knowing mum I would say it was a line from some old movie. I even googled it without result. Interestingly I have spent the last 13 years getting rid of stuff - my possessions have been broken, stolen, lost, abandoned, withheld, auctioned, destroyed, sold, given away, and sued for... I suspect short of blasting my possessions into orbit with a satellite or vapourizing them I have covered pretty much all potential aspects of dispersal. I flew home from the states with 6 suitcases, drove to my new tropical home with a sedan full of stuff, and aside from a few things that are still stored somewhere at my brother's place, that's it. Sometimes I just need to get used to things, like getting used to TLOML taking off in my car and calling it "our car". This, by the way, is fine with me, but I do know that I have an emotional response which I need to manage intellectually. I hope that people can be forgiving of that moment of non-generosity that happens before I get my emotions under control. It is just a touch of Gollumitis "mine mine my precious". In other ways I am incredibly generous, for example with my time, labour and expertise... I will help pretty much anyone to do pretty much anything with no expectation of repayment or return. But stuff... stuff is an issue... Actually I became quite philosophical about this after several years of repeated losses... for example just recently I bought my 6th cordless drill having had the other five taken from me in one way or another over the last ten years. I have taken a zen approach in deciding that this is clearly part of my life lesson... In the words of Deepak Chopra "Let it go".
I can't stop listing my problems without talking about crowds, queues, and social anxiety... I can get quite close to a panic attack in a crowd or when trapped in a queue. This has become worse since I have had FMS - I should say since FMS started to really impact on my existence because I think I have always had it probably - but now the panic to get out of the queue is exacerbated by the pain of standing and the desperate need to get off my feet. I'm a very socially successful person, I can talk to pretty much anyone about anything and yet I am quite freaked out by strangers and groups of people. One on one I am fine in a group I can't have my first few drinks fast enough to make these situations tolerable.
I'm not about to list other people's issues but I do know that no matter how smooth and unencumbered with complexes people appear they have got some areas of weirdness. I think we are all twisted, it is part of the human condition, part of the wonderful diversity that makes us all individual!
I am frightened of flying things - can't handle them being too close to me - is this because of my brother's 47 budgerigars (parakeets) that used to fly free through our rumpus room?
I have some level of separation anxiety, ok quite a high level... is this because my dad left when I was nearly 6? I suffered horrific homesickness as a kid - Dad said it was because I was too close to my mother - but I had an overwhelming fear of something terrible happening when I wasn't there - maybe I was just an incurable sticky beak or maybe it was a control issue?
I'm thingy about my things. Mum used to call me "Black Jed" and said "Nothing comes between Black Jed and what's hissun." -- I have no idea where she got that saying, although knowing mum I would say it was a line from some old movie. I even googled it without result. Interestingly I have spent the last 13 years getting rid of stuff - my possessions have been broken, stolen, lost, abandoned, withheld, auctioned, destroyed, sold, given away, and sued for... I suspect short of blasting my possessions into orbit with a satellite or vapourizing them I have covered pretty much all potential aspects of dispersal. I flew home from the states with 6 suitcases, drove to my new tropical home with a sedan full of stuff, and aside from a few things that are still stored somewhere at my brother's place, that's it. Sometimes I just need to get used to things, like getting used to TLOML taking off in my car and calling it "our car". This, by the way, is fine with me, but I do know that I have an emotional response which I need to manage intellectually. I hope that people can be forgiving of that moment of non-generosity that happens before I get my emotions under control. It is just a touch of Gollumitis "mine mine my precious". In other ways I am incredibly generous, for example with my time, labour and expertise... I will help pretty much anyone to do pretty much anything with no expectation of repayment or return. But stuff... stuff is an issue... Actually I became quite philosophical about this after several years of repeated losses... for example just recently I bought my 6th cordless drill having had the other five taken from me in one way or another over the last ten years. I have taken a zen approach in deciding that this is clearly part of my life lesson... In the words of Deepak Chopra "Let it go".
I can't stop listing my problems without talking about crowds, queues, and social anxiety... I can get quite close to a panic attack in a crowd or when trapped in a queue. This has become worse since I have had FMS - I should say since FMS started to really impact on my existence because I think I have always had it probably - but now the panic to get out of the queue is exacerbated by the pain of standing and the desperate need to get off my feet. I'm a very socially successful person, I can talk to pretty much anyone about anything and yet I am quite freaked out by strangers and groups of people. One on one I am fine in a group I can't have my first few drinks fast enough to make these situations tolerable.
I'm not about to list other people's issues but I do know that no matter how smooth and unencumbered with complexes people appear they have got some areas of weirdness. I think we are all twisted, it is part of the human condition, part of the wonderful diversity that makes us all individual!
Friday, 6 April 2012
F is for Frigging Fibromyalgia
I tell you what if I ever had a choice about what to Frigg around with it sure as F**k would NOT be Fibromyalgia. I am so Freaking sick of being Flattened by this Frightful FMS that I think I will dedicate the rest of this rant to the wonders of the F word and just how versatile it really is! A multi-purpose noun, adjective or verb!
I don't give a F**k (Here it is a gift that you are withholding (perhaps one that Flies))
It's F**king Fabulous (Note the expletive expression of delight (or sarcasm))
F**k Fibromyalgia (Probable not delight, more likely an angry expression of violence towards something abhorrent)
F**k you! (There are Few things that Feel more Fabulous than this ultimate rejection)
I'm F**ked! (This makes tonight no different From all the other nights when I have Felt F**ked)
It's F**ked ( It is NOT going to work any more)
What the F**k? (An all purpose question)
Well I'll be F**ked! (Anyone can be surprised, no?)
Fibro and Fantasy
Don't fit together
With or without the addition of leather.
I don't give a F**k (Here it is a gift that you are withholding (perhaps one that Flies))
It's F**king Fabulous (Note the expletive expression of delight (or sarcasm))
F**k Fibromyalgia (Probable not delight, more likely an angry expression of violence towards something abhorrent)
F**k you! (There are Few things that Feel more Fabulous than this ultimate rejection)
I'm F**ked! (This makes tonight no different From all the other nights when I have Felt F**ked)
It's F**ked ( It is NOT going to work any more)
What the F**k? (An all purpose question)
Well I'll be F**ked! (Anyone can be surprised, no?)
Fibro and Fantasy
Don't fit together
With or without the addition of leather.
Sunday, 1 April 2012
A guilty blogger...
Forgive me readers for I have sinned --- it has been bloody ages since my last blog and it was a fair while between that one and the one before.
*big bloody sigh* I haven't been reading many blogs either so all my cyber mates are very distant and unfamiliar at the moment... I'm sure I need a boatload of hail Herbert's to receive absolution for these sins.
Tomorrow we are going to Sydney and I have been stressed to the max (a total female dog to live with) about the trip... I can't wait to see The Boy and I talked to him for nearly two hours yesterday on the phone which was great. I have assignments due for University so I will need to keep studying while away. On top of all this I have been feeling like absolute excreta for the last week or more. Roving muscle pain that refuses to respond to anything from massage to morphine has taken up seemingly permanent residence in my body. Quite frankly it just sucks, to be honest.
TLOML has been wonderful as usual but even she has not escaped my irritation and my moody, PMS'y, I'm sick of hurting, unreasonable wrath. She's pretty good but isn't quite rivaling Mother Theresa for sainthood so there have been a few snappy exchanges. Fortunately we do manage to get over it very quickly and we are forgiving of each other.
The weather here has become incredibly beautiful; brilliant blue skies, warm but not as hot and humid, glistening sea, lush green gardens and bush (from all the rain we were having a few weeks ago)... quite frankly if I wasn't so keen to see The Boy I would rather stay here right now than go away. I'm sure once we are underway I will relax a bit and that I will actually enjoy it but it's kind of hard to think of traveling for pleasure when I have been so haunted lately.
So I don't blog because I feel like I am boring and grumpy and incapable of seeing anything in an interesting and amusing way... and then I lose touch and blah blah blah.... well there you go...
I will try to do better, I promise.
*big bloody sigh* I haven't been reading many blogs either so all my cyber mates are very distant and unfamiliar at the moment... I'm sure I need a boatload of hail Herbert's to receive absolution for these sins.
Tomorrow we are going to Sydney and I have been stressed to the max (a total female dog to live with) about the trip... I can't wait to see The Boy and I talked to him for nearly two hours yesterday on the phone which was great. I have assignments due for University so I will need to keep studying while away. On top of all this I have been feeling like absolute excreta for the last week or more. Roving muscle pain that refuses to respond to anything from massage to morphine has taken up seemingly permanent residence in my body. Quite frankly it just sucks, to be honest.
TLOML has been wonderful as usual but even she has not escaped my irritation and my moody, PMS'y, I'm sick of hurting, unreasonable wrath. She's pretty good but isn't quite rivaling Mother Theresa for sainthood so there have been a few snappy exchanges. Fortunately we do manage to get over it very quickly and we are forgiving of each other.
The weather here has become incredibly beautiful; brilliant blue skies, warm but not as hot and humid, glistening sea, lush green gardens and bush (from all the rain we were having a few weeks ago)... quite frankly if I wasn't so keen to see The Boy I would rather stay here right now than go away. I'm sure once we are underway I will relax a bit and that I will actually enjoy it but it's kind of hard to think of traveling for pleasure when I have been so haunted lately.
So I don't blog because I feel like I am boring and grumpy and incapable of seeing anything in an interesting and amusing way... and then I lose touch and blah blah blah.... well there you go...
I will try to do better, I promise.
Sunday, 18 March 2012
Fantastic fantasy
First let me make some excuses for not having blogged lately... It is partly that I have University work to do, partly that I feel kind of boring with nothing to report and partly that I have yet again developed a mild obsession with genealogical research. (Mostly I guess I am just slack).
Health check in - very VERY up and down... one weird thing that is bothering me is that I have a strange metallic taste on the tip of my tongue and about the bottom inch of my tongue ( to the tip) has altered taste sensation and feels odd and maybe is a bit numb. I have been noticing this for quite a while but it has become increasingly irritating over the last few weeks. My presumption at this stage is that it is most likely a drug side effect so I am starting to isolate meds and stop taking them (yes I will be good and taper etc)., The good news in this is that the my new GP, Dr Sincere, has finally given me some better pain relief in the form of Tramadol and so I don't have to keep struggling on with the codeine which has always resulted in more irritation than benefit! Even better is that the tongue issue was happening before Tramadol so I it is not the culprit! Now I probably need to make it clear, before my loving and adoring fans become desperately concerned about my possible addiction, I try to get by with no pain killers most of the time. This is just for the really nasty breakthrough pain when I just can't stand it any more. I am NOT about to start any regular pain medication if I can possibly avoid it!
The "Wet Season" has been living up to its name lately. This little island has been washed and rinsed so many times in the last week that I think we are all growing webbed feet! I can't begin to guess how many inches of rain have fallen in the last couple of weeks but it is LOTS!!! This means that all the creeks are running like crazy. Yesterday, Sunday, in spite of the rain TLOML and I decided (at her suggestion) to go and swim in one of the waterfall pools. OMG it was so beautiful. The water was cool but not cold. We were completely alone for the entire time we were there. I wanted TLOML to strip off and run through the bush and over the rocks like a wood nymph but she refused to oblige...(Oh well it was worth a try!) It was sublime... To have such a spectacular place, where the water has gushed for millennia, entirely to ourselves!
One of the many wonderful things about TLOML is her unquenchable sense of wonder, another is her unfailing appreciation of beauty, and a third is her truly deep rooted gratitude for the gifts we are given. How fortunate we are to be Australians and to have places like this to experience and appreciate!
Health check in - very VERY up and down... one weird thing that is bothering me is that I have a strange metallic taste on the tip of my tongue and about the bottom inch of my tongue ( to the tip) has altered taste sensation and feels odd and maybe is a bit numb. I have been noticing this for quite a while but it has become increasingly irritating over the last few weeks. My presumption at this stage is that it is most likely a drug side effect so I am starting to isolate meds and stop taking them (yes I will be good and taper etc)., The good news in this is that the my new GP, Dr Sincere, has finally given me some better pain relief in the form of Tramadol and so I don't have to keep struggling on with the codeine which has always resulted in more irritation than benefit! Even better is that the tongue issue was happening before Tramadol so I it is not the culprit! Now I probably need to make it clear, before my loving and adoring fans become desperately concerned about my possible addiction, I try to get by with no pain killers most of the time. This is just for the really nasty breakthrough pain when I just can't stand it any more. I am NOT about to start any regular pain medication if I can possibly avoid it!
Shermie, my car, had a flat tyre this morning... That was upsetting. Fifty dollars later (and drenched) we are underway again. I am going to have to re-register Shermie in my new state which is going to be expensive. We also have a trip to Sydney coming up in a couple of weeks which will be a bit of a financial drain, so money worries are causing some anxiety.
The "Wet Season" has been living up to its name lately. This little island has been washed and rinsed so many times in the last week that I think we are all growing webbed feet! I can't begin to guess how many inches of rain have fallen in the last couple of weeks but it is LOTS!!! This means that all the creeks are running like crazy. Yesterday, Sunday, in spite of the rain TLOML and I decided (at her suggestion) to go and swim in one of the waterfall pools. OMG it was so beautiful. The water was cool but not cold. We were completely alone for the entire time we were there. I wanted TLOML to strip off and run through the bush and over the rocks like a wood nymph but she refused to oblige...(Oh well it was worth a try!) It was sublime... To have such a spectacular place, where the water has gushed for millennia, entirely to ourselves!
One of the many wonderful things about TLOML is her unquenchable sense of wonder, another is her unfailing appreciation of beauty, and a third is her truly deep rooted gratitude for the gifts we are given. How fortunate we are to be Australians and to have places like this to experience and appreciate!
This is the spot but it was really full of water and the rocks in the foreground were submerged.
I am still totally incredulous that my life has taken this turn for the fabulous. TLOML and I are going from strength to strength. We have still never had an argument and the challenges that we have faced (that include some very serious stuff) have been external. I can't believe this happiness is mine! I am boring I say it so often! Literally, (and I do know what that means) I can't believe it! I've had a terrible string of stressful and difficult times in my life that began when I left Australia. Ghastly relationships, financial ruin, the loss of my parents, developing a chronic debilitating condition... The twenty-first century has not been easy for me. I was incapable of seeing any kind of happy ending and I was resigned to the fact that it would just be a miserable struggle until I was done. Quite frankly if I didn't have The Boy I would possibly have given up completely. It is so often said that things happen when you least expect it and it could not be more true for me. Suddenly I am in the best relationship of my life and living in paradise. One of the reasons I don't blog as often as I used to is that I can't imagine anyone would want to read me going on about my incredible new life all the time, and yet my gratitude and wonder totally dominate my heart and mind. Perhaps one needs to descend to the depths of despair (I love alliteration!) before finding a new source of light? That said I'm still hurting, limited, and physically struggling, but so very, VERY, grateful for the gifts the universe (aka Herbert) has given. Maybe pain is the shading that provides the rich contrast in the landscape of my life.
The ceaseless rain continues to fall and that's just fine!
Tuesday, 6 March 2012
Feeling old... Defensive walking...
Age is a funny thing it's relative, personal, and it's tied to time which is such an elastic concept that there seems to be no rhyme or reason. The passage of time is completely esoteric. You certainly can't pin it down.
Yesterday The Best Friend had a birthday. She was treated to the dubious pleasure of TLOML and I singing Happy Birthday onto her answering machine. The Best Friend was one of the youngest women in our class at school. In June I will turn 50 and TLOML hits her half century in November. Strangely,The Chef, who was featured recently in a newspaper article has managed to only be 47.... Hmmm very interesting, cause I am almost certain that she was actually older than me! LOL. Oh well, we know that there are some things that can halt the passage of time and most of them have to do with wealth and fame. I don't blame The Chef really; after all, 50 is a VERY BIG number!
Jazz, my blogging fibro sister, has written a great blog about feeling older than she is and rather than repeat all the things I wanted to say that she has already said I will just link to her here (I'm sure she won't mind). It's a great blog. So often I have ideas fermenting in my brain getting close to becoming a blog and Jazz will jump in just before I am ready to write it and steal all my thunder! Sometimes we seem to be eerily in sync.
My take on this feeling older actually needs to be credited to a conversation I had with The Best Friend a couple of months ago. She pointed out the way elderly people negotiate their way through a crowd. Many/most/perhaps all seniors move near other people with a visible hyper-vigilance. This isn't "defensive driving", it's "defensive walking". Keeping a very close eye on anyone else who is moving nearby and testing the ground before putting all weight on the leading foot has become a way of life for me. I get it, I really get how elderly people feel out in the world. I know what it's like to fear an accidental bump with a stranger - I know because it hurts! It hurts like (insert expletive of your choice) when I get jostled in a stupidmarket queue or when someone laughing unexpectedly steps back into me and it triggers a series of painful spasms that radiate from either the site of impact or from the part of me that moves unexpectedly to save myself. I now travel the world with the wary, skepticism of a bona fide Methuselah!
When I was a kid I never took a staircase at less than two steps at a time; almost every time I ran down steps I would jump down the last five or six. I touched a banister only to vault out of the stairs or down to the next flight. There were two speeds, flat out and stopped. Those days are gone. Now I traverse the globe with care, caution, and a desperate desire to anticipate the movements of any other things that move!
Last night I knocked over a glass of water. Startled myself which hurt my back. Dropped to my knees to wipe up the spillage which caused stabbing pains to explode from both knees. Reached under the bed with the bathmat and seriously popped some kind of tendon in my right shoulder. Then stood up and collapsed on the bed groaning in pain.... see what happens when I am surprised? Thank goodness TLOML was there to take over and clean up my mess. The knees and shoulder have yet to relent. So do I feel older than I am - damn straight I do. Do I move like someone older than I am - pretty much all the time (unless I forget or react and do something like I did with wiping up the spill last night). Do I have that suspicious hyper-vigilance about how other people are moving? Yep, I do.
So to all my geriatric followers (of whom I have none) I get it! I know you are careful and that the cranky look on your face is actually fear. I, like you, fear the unexpected. I don't need to bungee jump for thrills - walking through a crowd is about as much excitement as I can stand!
Yesterday The Best Friend had a birthday. She was treated to the dubious pleasure of TLOML and I singing Happy Birthday onto her answering machine. The Best Friend was one of the youngest women in our class at school. In June I will turn 50 and TLOML hits her half century in November. Strangely,The Chef, who was featured recently in a newspaper article has managed to only be 47.... Hmmm very interesting, cause I am almost certain that she was actually older than me! LOL. Oh well, we know that there are some things that can halt the passage of time and most of them have to do with wealth and fame. I don't blame The Chef really; after all, 50 is a VERY BIG number!
Jazz, my blogging fibro sister, has written a great blog about feeling older than she is and rather than repeat all the things I wanted to say that she has already said I will just link to her here (I'm sure she won't mind). It's a great blog. So often I have ideas fermenting in my brain getting close to becoming a blog and Jazz will jump in just before I am ready to write it and steal all my thunder! Sometimes we seem to be eerily in sync.
My take on this feeling older actually needs to be credited to a conversation I had with The Best Friend a couple of months ago. She pointed out the way elderly people negotiate their way through a crowd. Many/most/perhaps all seniors move near other people with a visible hyper-vigilance. This isn't "defensive driving", it's "defensive walking". Keeping a very close eye on anyone else who is moving nearby and testing the ground before putting all weight on the leading foot has become a way of life for me. I get it, I really get how elderly people feel out in the world. I know what it's like to fear an accidental bump with a stranger - I know because it hurts! It hurts like (insert expletive of your choice) when I get jostled in a stupidmarket queue or when someone laughing unexpectedly steps back into me and it triggers a series of painful spasms that radiate from either the site of impact or from the part of me that moves unexpectedly to save myself. I now travel the world with the wary, skepticism of a bona fide Methuselah!
When I was a kid I never took a staircase at less than two steps at a time; almost every time I ran down steps I would jump down the last five or six. I touched a banister only to vault out of the stairs or down to the next flight. There were two speeds, flat out and stopped. Those days are gone. Now I traverse the globe with care, caution, and a desperate desire to anticipate the movements of any other things that move!
Last night I knocked over a glass of water. Startled myself which hurt my back. Dropped to my knees to wipe up the spillage which caused stabbing pains to explode from both knees. Reached under the bed with the bathmat and seriously popped some kind of tendon in my right shoulder. Then stood up and collapsed on the bed groaning in pain.... see what happens when I am surprised? Thank goodness TLOML was there to take over and clean up my mess. The knees and shoulder have yet to relent. So do I feel older than I am - damn straight I do. Do I move like someone older than I am - pretty much all the time (unless I forget or react and do something like I did with wiping up the spill last night). Do I have that suspicious hyper-vigilance about how other people are moving? Yep, I do.
So to all my geriatric followers (of whom I have none) I get it! I know you are careful and that the cranky look on your face is actually fear. I, like you, fear the unexpected. I don't need to bungee jump for thrills - walking through a crowd is about as much excitement as I can stand!
Tuesday, 28 February 2012
Claude Raines has nothing on me!
First I must admit that EVEN I am not old enough to remember Claude Raines performance in The Invisible Man... I guess I could be a bit more "trendy and current" by referring to the invisibility cloak in the Harry Potter books... either way you get my drift!
I am writing this blog for a brand new blog carnival that is specifically focused on Understanding Invisible Illness (UII to those on the inside!). This first call for blog submissions has asked for successful procedures or treatments that make life better. Unfortunately I haven't got a story that is exactly of that ilk but I certainly can wax lyrical, at length, about the influences in my life that have made my (mostly) invisible illness easier to bear.
First though I want to talk a little about what this invisible illness means to me. Way back when I first started Gonna Eat Worms I wrote a blog about invisible illness and in it I drew a parallel between having an invisible condition and being a gay or lesbian person who looks "straight". The interesting part of this is that I experience my life as a lesbian primarily as someone whose orientation is quite obvious and yet I experience life as a person with a chronic disabling condition as "able to pass". Any keen observer, or any person specifically interested in me would realize that I have limitations, they would probably notice that I am in pain even when I choose not to mention it; but the fact is that there are very few keen observers in this world and most people are far more interested in other things (like themselves) than they are in me. So by and large I can muddle along and remain in the disabled "closet" if that is where I want to be.
Concealing your real identity and hiding your condition, both come at a price. Never having served in India with the British Raj I have not fully perfected my "stiff upper lip" and hiding my pain and not utilizing aids (like my walking stick/cane) makes everything worse. It makes things hurt more and for longer, it makes my recovery time longer and more painful, and it sets up a plethora of future situations where people who don't know I have a problem will ask me to do things that I just can't do. In spite of this substantial weight of evidence I still want to hide sometimes and I can't loudly and proudly declare my condition. Yes, I can pass and yes, I sometimes choose that option. There are times when it is advantageous to conceal my weakness and because my condition is fundamentally invisible I have that choice!
So although I have no treatments or procedures that have helped me I do have a couple of HUGE positives that make my life a LOT easier. I have found doctors who believe me and who don't treat me like I am a malingering bludger... This is NOT the experience of all my Fibro Sisters. I have a partner (TLOML) who is always considerate of my situation, she checks in with me and gets my personal weather report regularly. She also runs interference for me with other people, at times "outing" me at a point when I would perhaps have remained closeted, but though in those cases I was pushed rather than jumping I really am glad because it makes life easier when people know and understand.
Tonight we are going to a February 29th party where people will be sitting on the floor to share a Syrian style banquet. TLOML has been onto it already warning our hosts that sitting on the floor is probably not workable for me and making sure that alternative seating will be available. I get a little embarrassed when people make a fuss but the longer term benefits of not exacerbating my problems far outweighs the few moments of awkwardness.
Invisibility; a curse and a blessing. It gives me freedom but also causes me to be the recipient of considerable disrespect at times. I guess the real problem, personally, is that it compromises my reality and taints my authenticity. I have been out and proud as a lesbian for nearly thirty years, I have supported my fellow travelers and defended the rights of all people to live their personal truths. So now I think it's time to summon Gloria Gaynor and blast "I am what I am, I don't want praise, I don't want pity!" Not just for me but for everyone who lives with disabilities and chronic illness, the more we all speak up, accept and declare ourselves, the sooner we will defeat the stigma of difference.
I am writing this blog for a brand new blog carnival that is specifically focused on Understanding Invisible Illness (UII to those on the inside!). This first call for blog submissions has asked for successful procedures or treatments that make life better. Unfortunately I haven't got a story that is exactly of that ilk but I certainly can wax lyrical, at length, about the influences in my life that have made my (mostly) invisible illness easier to bear.
First though I want to talk a little about what this invisible illness means to me. Way back when I first started Gonna Eat Worms I wrote a blog about invisible illness and in it I drew a parallel between having an invisible condition and being a gay or lesbian person who looks "straight". The interesting part of this is that I experience my life as a lesbian primarily as someone whose orientation is quite obvious and yet I experience life as a person with a chronic disabling condition as "able to pass". Any keen observer, or any person specifically interested in me would realize that I have limitations, they would probably notice that I am in pain even when I choose not to mention it; but the fact is that there are very few keen observers in this world and most people are far more interested in other things (like themselves) than they are in me. So by and large I can muddle along and remain in the disabled "closet" if that is where I want to be.
Concealing your real identity and hiding your condition, both come at a price. Never having served in India with the British Raj I have not fully perfected my "stiff upper lip" and hiding my pain and not utilizing aids (like my walking stick/cane) makes everything worse. It makes things hurt more and for longer, it makes my recovery time longer and more painful, and it sets up a plethora of future situations where people who don't know I have a problem will ask me to do things that I just can't do. In spite of this substantial weight of evidence I still want to hide sometimes and I can't loudly and proudly declare my condition. Yes, I can pass and yes, I sometimes choose that option. There are times when it is advantageous to conceal my weakness and because my condition is fundamentally invisible I have that choice!
So although I have no treatments or procedures that have helped me I do have a couple of HUGE positives that make my life a LOT easier. I have found doctors who believe me and who don't treat me like I am a malingering bludger... This is NOT the experience of all my Fibro Sisters. I have a partner (TLOML) who is always considerate of my situation, she checks in with me and gets my personal weather report regularly. She also runs interference for me with other people, at times "outing" me at a point when I would perhaps have remained closeted, but though in those cases I was pushed rather than jumping I really am glad because it makes life easier when people know and understand.
Tonight we are going to a February 29th party where people will be sitting on the floor to share a Syrian style banquet. TLOML has been onto it already warning our hosts that sitting on the floor is probably not workable for me and making sure that alternative seating will be available. I get a little embarrassed when people make a fuss but the longer term benefits of not exacerbating my problems far outweighs the few moments of awkwardness.
Invisibility; a curse and a blessing. It gives me freedom but also causes me to be the recipient of considerable disrespect at times. I guess the real problem, personally, is that it compromises my reality and taints my authenticity. I have been out and proud as a lesbian for nearly thirty years, I have supported my fellow travelers and defended the rights of all people to live their personal truths. So now I think it's time to summon Gloria Gaynor and blast "I am what I am, I don't want praise, I don't want pity!" Not just for me but for everyone who lives with disabilities and chronic illness, the more we all speak up, accept and declare ourselves, the sooner we will defeat the stigma of difference.
Sunday, 26 February 2012
If I wasn't lying down I could sing "I'm still standing"!
I have just participated in and pretty much successfully survived a three day university workshop. I'd like to say I blitzed this weekend but in truth I was severely challenged by the physical demands. Even now I am slightly exaggerating because the weekend comprised a three hour session on Friday night and then two seven hour sessions on Saturday and Sunday. Part of the difficulty for me was that with ferry, and car, trips each way a seven hour day becomes a ten hour day and all I can do when I get home is lie down and whine and thank Herbert that TLOML is here to make sure my collapse doesn't cause me to starve or rot.
The workshop was a real trial. It's expensive for one thing - catching the ferry and then paying to borrow a car on the mainland. It's draining and physically taxing. The chairs are not very comfortable and they don't face directly forward so I have to turn my head. Accessibility services offered me the use of a more fully adjustable chair but I didn't want to make a fuss so I refused. As I am doing all this again the weekend after next I might have to rethink that position... As regards the content of the course there were moments when I felt like I was reading/listening to a completely alien language, I seriously started to wonder if perhaps I had totally lost my ability to assimilate and understand new information. But somehow the understanding swam to the top and forced its way through the pond slime of my awareness. It seems I have not allowed my brain to vegetate completely. I can't speak so encouragingly about the body...
I'm quite concerned that I might not be able to manage all these workshops. I have three of the next five weekends committed to workshops if I proceed with the program in which I am currently enrolled. I'm tempted to convert one of the subjects to an external subject so that I don't have to attend. The trouble with this is that I actually learn very well in a classroom situation and it is by far the easiest and most successful way for me to grasp and fully comprehend the information...sigh...My intrapersonal conflict perpetuates! (see how clever I am becoming with my new studies!)
Sunday, 12 February 2012
Perceptions of ability within disability...
Today I am going to see a new GP. Anyone who has read this blog from the beginning (I really don't think you exist) will remember my trepidation and then my joy at my first visit to Dr McLovely, whom I am missing quite a lot! I have been here nearly a month and I MUST get some prescription renewals. I'm dreading it. I have to take my copy of 'War and Peace' (my medical file from Dr McLovely).
I now live in a VERY small community, TLOML works at the local medical center part-time, The Nurse is there full-time, I socialize with some of the doctors and most of the nurses and admin staff... Of course The Nurse and TLOML see me enough to see both my good days and my bad. They know that when I go out to a social function I am sucking it up and soldiering on; they know that I often have to pay the next day for the efforts of the previous day; they know that the times of activity only happen because of the 18 - 20 hours I spend per day in bed. Others don't.
On Saturday TLOML and I went on the ferry to the bigger city on the mainland. Foolishly I had overdone it quite badly on Thursday and Friday and I was (and still am) in the high range with both my constant pain and my breakthrough pain. In anticipation I took my cane. I think it is the first time I have used the cane on the island. Here the stupidmarkets are tiny, the parking for everything is close, TLOML is almost always there to help me balance, and basically I have been able to get by without it. Naturally we knew people on the ferry, (TLOML knows almost everyone everywhere)and though I caught a quick glance at the said walking stick in my left hand nothing was said. Once in the city I used it to walk off the ferry to the car, then didn't pull it out again until we were at the SUPER mall. I have to be really honest here, there just aren't all that many things I miss about the US; I miss drive through banking; I miss the low cost of things there; ummmm... I miss the Interstates... But there is one thing that I miss above all, one thing that stands out from the others like a hippy at a GOP convention... I miss with passion the courtesy motorized carts that were available even at my local stupidmarket.
Using one of the courtesy scooters was a VERY hard thing to do the first time. I remember gazing enviously at those carts for a long time before a day came when I was just SO SORE and Sam's Club was SO BIG that I simply could no longer resist. I was never a constant user, it always depended on my pain and fatigue levels, the potential length and complexity of the shopping experience, and if I was alone or if I had someone who could manage for me if I needed to get off my feet. Saturday I longed for one of those courtesy scooters. At first I was leaning on the trolley but then we bought the rather heavy punching bag (a birthday gift to TLOML's sweetheart younger son) and the trolley became too heavy, so I went back to the cane and handed the trolley over to TLOML. I couldn't take waiting in the queue at Target so I waited on the kangaroo on the kiddie coin-op carousel. I really wish Australia would catch up with the US as regards things like courtesy scooters, I would have been so relieved to have had one then and there!
So here I am going to yet another doctor, I'm worried that the invisibility of my condition might work against me, the usual worry. It's an old problem and one that all of us with invisible conditions experience. In Sydney when I went to the doctor I always used my cane. It was necessary to walk alone from the parking which was quite distant but it was also a concrete and tangible symbol of the disability that is otherwise invisible. I was also suffering a LOT of vertigo at that time and had the balance of a two-legged stool! Now the vertigo has eased off somewhat and the parking is right outside the door, but I do need this doctor to understand.
It seems a lot to ask of a stranger, that they can understand something that I really don't understand myself. I don't know why I can do almost anything for a short period of time, I don't know why I can carry a punching bag off the ferry and then have to go home and lie down to recover, I don't know why sometimes I can't make myself stand up straight when I get up out of bed, I don't know why sometimes I fall over for no real reason when I am trying so hard not to fall, I don't know why the urge to be horizontal is like an addiction or a craving, I just don't know... Most days I can suck it up for a couple of hours and go out to a social event and only the most observant of people would ever know I was in pain - some days that would be impossible.
So do I walk in to the doctors office with my walking stick in hand and say hello to the receptionist who I last saw when we shared a bottle of bubbles at a fabulous pool party?
I now live in a VERY small community, TLOML works at the local medical center part-time, The Nurse is there full-time, I socialize with some of the doctors and most of the nurses and admin staff... Of course The Nurse and TLOML see me enough to see both my good days and my bad. They know that when I go out to a social function I am sucking it up and soldiering on; they know that I often have to pay the next day for the efforts of the previous day; they know that the times of activity only happen because of the 18 - 20 hours I spend per day in bed. Others don't.
On Saturday TLOML and I went on the ferry to the bigger city on the mainland. Foolishly I had overdone it quite badly on Thursday and Friday and I was (and still am) in the high range with both my constant pain and my breakthrough pain. In anticipation I took my cane. I think it is the first time I have used the cane on the island. Here the stupidmarkets are tiny, the parking for everything is close, TLOML is almost always there to help me balance, and basically I have been able to get by without it. Naturally we knew people on the ferry, (TLOML knows almost everyone everywhere)and though I caught a quick glance at the said walking stick in my left hand nothing was said. Once in the city I used it to walk off the ferry to the car, then didn't pull it out again until we were at the SUPER mall. I have to be really honest here, there just aren't all that many things I miss about the US; I miss drive through banking; I miss the low cost of things there; ummmm... I miss the Interstates... But there is one thing that I miss above all, one thing that stands out from the others like a hippy at a GOP convention... I miss with passion the courtesy motorized carts that were available even at my local stupidmarket.
Using one of the courtesy scooters was a VERY hard thing to do the first time. I remember gazing enviously at those carts for a long time before a day came when I was just SO SORE and Sam's Club was SO BIG that I simply could no longer resist. I was never a constant user, it always depended on my pain and fatigue levels, the potential length and complexity of the shopping experience, and if I was alone or if I had someone who could manage for me if I needed to get off my feet. Saturday I longed for one of those courtesy scooters. At first I was leaning on the trolley but then we bought the rather heavy punching bag (a birthday gift to TLOML's sweetheart younger son) and the trolley became too heavy, so I went back to the cane and handed the trolley over to TLOML. I couldn't take waiting in the queue at Target so I waited on the kangaroo on the kiddie coin-op carousel. I really wish Australia would catch up with the US as regards things like courtesy scooters, I would have been so relieved to have had one then and there!
So here I am going to yet another doctor, I'm worried that the invisibility of my condition might work against me, the usual worry. It's an old problem and one that all of us with invisible conditions experience. In Sydney when I went to the doctor I always used my cane. It was necessary to walk alone from the parking which was quite distant but it was also a concrete and tangible symbol of the disability that is otherwise invisible. I was also suffering a LOT of vertigo at that time and had the balance of a two-legged stool! Now the vertigo has eased off somewhat and the parking is right outside the door, but I do need this doctor to understand.
It seems a lot to ask of a stranger, that they can understand something that I really don't understand myself. I don't know why I can do almost anything for a short period of time, I don't know why I can carry a punching bag off the ferry and then have to go home and lie down to recover, I don't know why sometimes I can't make myself stand up straight when I get up out of bed, I don't know why sometimes I fall over for no real reason when I am trying so hard not to fall, I don't know why the urge to be horizontal is like an addiction or a craving, I just don't know... Most days I can suck it up for a couple of hours and go out to a social event and only the most observant of people would ever know I was in pain - some days that would be impossible.
So do I walk in to the doctors office with my walking stick in hand and say hello to the receptionist who I last saw when we shared a bottle of bubbles at a fabulous pool party?
Tuesday, 31 January 2012
Who has the voodoo doll of me?
Ok time to fess up... I am not perfect... in fact I have made a few enemies in my time (I'm not really sure how but that is another story).
Last night I had an experience that clearly confirmed that someone, one of my American exes I suspect, has acquired a voodoo doll in my image.
Sitting on the couch with TLOML (who is wonderful/incredible/fabulous/and even better than I imagined etc) watching the teev suddenly my left butt/hip starts to hurt with a deep ache... a moment later my right ankle develops a stabbing pain for no reason, I hadn't even moved it! The ankle hurts enough to take my mind off my butt (oooh that was a weird image), but not for long because a moment or two later it's my right shoulder, then there is something stinging me at the back of my right knee, oh hang on -- nothing really there... no actual sting. Then it's my right side of my butt with a deep throbbing ache. If it didn't hurt it would have been amusing.
I started to describe this to TLOML (who is terrific/adorable/fabulous/and actually cares about my aches and pains etc) and while we are talking these blocks of pain continue to move around my body. Mostly they were aches but, just so I don't get too bored, there were a few sharp stinging pains and some weird skin sensations... wandering imaginary insects, huge patches of burning skin etc.
Now any of my pals out there who are unfortunate enough to share this bloody rotten condition with me may have experienced feelings like this... Actually wandering random pains are not all that unusual. What was really odd last night was the speed of the changes. I could hardly keep up with what was hurting most while trying to describe it to TLOML (who is gorgeous/amazing/fabulous and genuinely seems to be in love with me too for some insane reason etc). I was announcing a new location about every ten seconds.
As a rational and well grounded, sensible woman, I can, of course, only come to one conclusion; someone is playing roughly with a voodoo doll - an effigy of me. I don't think they were doing the stereotypical sticking in of pins, mostly I think they were squeezing or pinching parts of me with an occasional little pin prick. Perhaps they have acquired one like these ones pictured below (available at Voodoo Authentica)
All I can say is that I hope they misplace my effigy as soon as possible because I felt like I was playing some strange twisted version of "Whack-A-Mole" that would have been more appropriately called "Rub-A-Sore Spot"... I couldn't keep up and failed miserably.
Fortunately this episode petered out eventually and I was able to enjoy Tablet Time with TLOML (who is excellent/awesome/fabulous and who I love more every day etc). Courtesy of Dr McLovely I have been getting some sleep which IS interrupted by pain but IS NOT interrupted by the jumbo jet that is landing in the bedroom every ten minutes or so (aka the air conditioner). I have even been dreaming a LOT lately. If lack of sleep is really the culprit in the FMS mystery I should be feeling better... I'm sad to report that "better" is not the Word of the Year so far for me. "Happier" has taken what appears to be an unbeatable lead in the Word of the Year stakes! That might be courtesy of TLOML (who is enchanting/amusing/fabulous and who has plastered a huge smile on my dial etc).
Herbert, would you please make the villain stop playing with the doll?
Last night I had an experience that clearly confirmed that someone, one of my American exes I suspect, has acquired a voodoo doll in my image.
Sitting on the couch with TLOML (who is wonderful/incredible/fabulous/and even better than I imagined etc) watching the teev suddenly my left butt/hip starts to hurt with a deep ache... a moment later my right ankle develops a stabbing pain for no reason, I hadn't even moved it! The ankle hurts enough to take my mind off my butt (oooh that was a weird image), but not for long because a moment or two later it's my right shoulder, then there is something stinging me at the back of my right knee, oh hang on -- nothing really there... no actual sting. Then it's my right side of my butt with a deep throbbing ache. If it didn't hurt it would have been amusing.
I started to describe this to TLOML (who is terrific/adorable/fabulous/and actually cares about my aches and pains etc) and while we are talking these blocks of pain continue to move around my body. Mostly they were aches but, just so I don't get too bored, there were a few sharp stinging pains and some weird skin sensations... wandering imaginary insects, huge patches of burning skin etc.
Now any of my pals out there who are unfortunate enough to share this bloody rotten condition with me may have experienced feelings like this... Actually wandering random pains are not all that unusual. What was really odd last night was the speed of the changes. I could hardly keep up with what was hurting most while trying to describe it to TLOML (who is gorgeous/amazing/fabulous and genuinely seems to be in love with me too for some insane reason etc). I was announcing a new location about every ten seconds.
As a rational and well grounded, sensible woman, I can, of course, only come to one conclusion; someone is playing roughly with a voodoo doll - an effigy of me. I don't think they were doing the stereotypical sticking in of pins, mostly I think they were squeezing or pinching parts of me with an occasional little pin prick. Perhaps they have acquired one like these ones pictured below (available at Voodoo Authentica)
All I can say is that I hope they misplace my effigy as soon as possible because I felt like I was playing some strange twisted version of "Whack-A-Mole" that would have been more appropriately called "Rub-A-Sore Spot"... I couldn't keep up and failed miserably.
Fortunately this episode petered out eventually and I was able to enjoy Tablet Time with TLOML (who is excellent/awesome/fabulous and who I love more every day etc). Courtesy of Dr McLovely I have been getting some sleep which IS interrupted by pain but IS NOT interrupted by the jumbo jet that is landing in the bedroom every ten minutes or so (aka the air conditioner). I have even been dreaming a LOT lately. If lack of sleep is really the culprit in the FMS mystery I should be feeling better... I'm sad to report that "better" is not the Word of the Year so far for me. "Happier" has taken what appears to be an unbeatable lead in the Word of the Year stakes! That might be courtesy of TLOML (who is enchanting/amusing/fabulous and who has plastered a huge smile on my dial etc).
Herbert, would you please make the villain stop playing with the doll?
Tuesday, 24 January 2012
Domestic Goddess....um...well...um...?
Ok here it is in black and white, the truth, the whole truth, and nothing but the truth... (As best as I can relate it through the twisted lens of my perceptions.)
I've never been much good at cooking nor any of the other domestic arts.
I can get by, but only just. My idea of cooking is to get take-out or to go to a restaurant. My idea of cleaning is to not make a mess. I am pretty good at staying on top of the washing, at least that way I get to play with water, and I do like to wear clean clothes. Ironing is one of those things I can do but I avoid. Suffice it to say that I have spent my adult life taking a minimalistic approach to domesticity.
In my defense I will say that I am handy. Fixing things is generally fun, a bit of a puzzle and then a tremendously satisfying outcome that pours positive strokes into my instant gratification pleasure centre. A couple of days ago I fixed TLOML's sliding screen door. It took $12 and about five minutes (including diagnosis and then installation of the new rollers). I have been living large on the praise I got for that! Apparently it had been a giant pain in the arse for about five years. I'm working on procuring some decking board and I will be doing a little verandah repair in the next few days too... that ought to put a shine on my halo!
Anyway, yesterday, because TLOML had not had enough sleep, had gone to work and stayed late for a meeting, and was heading out in the evening for an exercise class, I decided to demonstrate my rusty dusty domestic skills and save TLOML a few worries. So after dropping TLOML off to work in the morning I went to the smaller of the two tiny supermarkets we have here on the island. (Note the use of the word "we" clearly I am beginning to identify as a resident!) I bought, pasta, broccoli, mushrooms, onions, zucchini, beautiful tomatoes with the vine still attached, and cheese. Then I headed home and stripped the bed and put on a load of washing (this involved a couple of trips up and down the quite long flight of stairs to ground level where the laundry and the clothes line are located).
Then I took another run down the street to the liquor store (the bottle shop) to get some cheap red wine for cooking. Finally it was time to start the masterpiece. If I may digress for a moment and correct a few misapprehensions... although I choose not to cook and I'm not very good at the timing and coordination of meal preparation (having had so little practice) I actually can cook. I'm reasonably creative (one day you should ask The Boy about the White Gumbo) and not bad at combining flavours (though the White Gumbo might belie that point).
It began with the rinds and the fat of 5 rashers of bacon cooked to a crisp and then removed, this leaves a small amount of bacon dripping which is far and away the most indulgently delicious fat for any cooking project! Then I sliced three big brown onions and tossed them in with two heaped teaspoons of garlic, one of ginger, and one level teaspoon of chilli. I had to drop in some butter as there wasn't enough bacon fat. Then I sliced and added about ten medium sized mushrooms. In went seven vine ripened tomatoes - sliced, the rest of the bacon thinly sliced, and about a cup of tomato paste and two cups of cheap red wine. Simmer and stir regularly. Meanwhile back at the ranch the washing came in from the line, unfortunately it needed my help and refused to spontaneously fold and stack itself. Then I sliced the zucchini and tossed it in, cut up the broccoli (even the stalk) and added it too. Another slosh of wine and turn it down to simmer and reduce. This concoction can be made with any veggies you happen to have on hand, any meat or it can be vegetarian, the only really standard requirements are the onions, tomatoes, and the wine. The rest is completely flexible. You can serve it on pasta or rice, or over meat or even on toast. TLOML and her son were both suitably impressed (I did warn them that they will need to wait for the next blue moon to see this or anything else cooked by me).
The only problem with my stint as a Domestic Goddess is that I overdid it a bit and I have been paying since about 4pm yesterday afternoon. Roving muscle spasms and some fairly cruel baseline pain have sidelined me today. I have even broken my rule about taking drugs that make me drowsy during the day. I caved in and took a valium a little while ago. I'm hoping that it will help with the spasms but so far not so good unfortunately. So yesterday's Goddess is today's giant slug lying down. I still think it was worth it!
All the while I was cooking I was trying to think of a suitable name for my creation. Heretofore it has always been just called "gunk" but I think it is deserving of a more elegant and sophisticated title. I considered calling it "Henry VIII Sauce" as I beheaded the zucchini... I would love to hear some suggestions?
I've never been much good at cooking nor any of the other domestic arts.
I can get by, but only just. My idea of cooking is to get take-out or to go to a restaurant. My idea of cleaning is to not make a mess. I am pretty good at staying on top of the washing, at least that way I get to play with water, and I do like to wear clean clothes. Ironing is one of those things I can do but I avoid. Suffice it to say that I have spent my adult life taking a minimalistic approach to domesticity.
In my defense I will say that I am handy. Fixing things is generally fun, a bit of a puzzle and then a tremendously satisfying outcome that pours positive strokes into my instant gratification pleasure centre. A couple of days ago I fixed TLOML's sliding screen door. It took $12 and about five minutes (including diagnosis and then installation of the new rollers). I have been living large on the praise I got for that! Apparently it had been a giant pain in the arse for about five years. I'm working on procuring some decking board and I will be doing a little verandah repair in the next few days too... that ought to put a shine on my halo!
Anyway, yesterday, because TLOML had not had enough sleep, had gone to work and stayed late for a meeting, and was heading out in the evening for an exercise class, I decided to demonstrate my rusty dusty domestic skills and save TLOML a few worries. So after dropping TLOML off to work in the morning I went to the smaller of the two tiny supermarkets we have here on the island. (Note the use of the word "we" clearly I am beginning to identify as a resident!) I bought, pasta, broccoli, mushrooms, onions, zucchini, beautiful tomatoes with the vine still attached, and cheese. Then I headed home and stripped the bed and put on a load of washing (this involved a couple of trips up and down the quite long flight of stairs to ground level where the laundry and the clothes line are located).
Then I took another run down the street to the liquor store (the bottle shop) to get some cheap red wine for cooking. Finally it was time to start the masterpiece. If I may digress for a moment and correct a few misapprehensions... although I choose not to cook and I'm not very good at the timing and coordination of meal preparation (having had so little practice) I actually can cook. I'm reasonably creative (one day you should ask The Boy about the White Gumbo) and not bad at combining flavours (though the White Gumbo might belie that point).
It began with the rinds and the fat of 5 rashers of bacon cooked to a crisp and then removed, this leaves a small amount of bacon dripping which is far and away the most indulgently delicious fat for any cooking project! Then I sliced three big brown onions and tossed them in with two heaped teaspoons of garlic, one of ginger, and one level teaspoon of chilli. I had to drop in some butter as there wasn't enough bacon fat. Then I sliced and added about ten medium sized mushrooms. In went seven vine ripened tomatoes - sliced, the rest of the bacon thinly sliced, and about a cup of tomato paste and two cups of cheap red wine. Simmer and stir regularly. Meanwhile back at the ranch the washing came in from the line, unfortunately it needed my help and refused to spontaneously fold and stack itself. Then I sliced the zucchini and tossed it in, cut up the broccoli (even the stalk) and added it too. Another slosh of wine and turn it down to simmer and reduce. This concoction can be made with any veggies you happen to have on hand, any meat or it can be vegetarian, the only really standard requirements are the onions, tomatoes, and the wine. The rest is completely flexible. You can serve it on pasta or rice, or over meat or even on toast. TLOML and her son were both suitably impressed (I did warn them that they will need to wait for the next blue moon to see this or anything else cooked by me).
The only problem with my stint as a Domestic Goddess is that I overdid it a bit and I have been paying since about 4pm yesterday afternoon. Roving muscle spasms and some fairly cruel baseline pain have sidelined me today. I have even broken my rule about taking drugs that make me drowsy during the day. I caved in and took a valium a little while ago. I'm hoping that it will help with the spasms but so far not so good unfortunately. So yesterday's Goddess is today's giant slug lying down. I still think it was worth it!
All the while I was cooking I was trying to think of a suitable name for my creation. Heretofore it has always been just called "gunk" but I think it is deserving of a more elegant and sophisticated title. I considered calling it "Henry VIII Sauce" as I beheaded the zucchini... I would love to hear some suggestions?
Saturday, 21 January 2012
Paradise and love can only go so far...
The last few days have been a bit of a trial for me. I appear to have contracted some generic flu/cold bug of some sort that started as a sinus issue with increases in pain and fatigue. Now it has moved to my upper respiratory tract giving me a gravelly voice and a phlegmy cough. The problem with this is that so many of the symptoms are actually just an increase of those that already contribute to my average day.
There have been times when I have used the analogy of how one feels when one has the flu to describe the nature of the constant low level pain and fatigue that are just part of the baseline for me. When an ordinary (read "healthy") person comes down with a bug they feel sore and tired. They like to rest more and lie down more but they can force themselves to do a strenuous activity if they really must. Welcome to my normal.
So here I am, happier than I have ever been in my life, enjoying paradise with fabulous food, wonderful company, and virtually no stress and feeling really quite crappy. Yesterday was the worst day for the flu'ish feeling. Today just feels like a quite unpleasant flare with the added pleasure of a very sore throat.
There are a lot of bugs in the tropics, ones with multiple legs, not just bacteria and viruses! I know that seems rather obvious but when you have weird skin sensations where you feel like you are being bitten or stung for no good reason, or when you feel things walking on your skin that really aren't there, the added factor of the presence of "actual" bugs makes for a weird mindset. I'm slapping myself too often, getting sudden stabbing pains in a tiny spot and then searching for something that caused it. People could be forgiven for thinking my condition was psychological instead of physiological or neurological (the verdict is still out on that one re Fibromyalgia though the current theory is blaming the central nervous system) when they see me scrounging around looking for imaginary ants, spiders and beetles.
Sooooo... I just took some pain killers and I'm getting my poop in a group for another social engagement this evening. I have been out more since I arrived here last Tuesday than I was in four months in Sydney! It seems that a highly social two thousand can outdo an insular five million hands down. Of course TLOML is very social and involved in all kinds of things and in Sydney I was verging on reclusive. The good thing is that most things are very close to home here. TLOML and I haven't really got the "I need to go home now" signal down yet. I don't like a big fuss and would like to be able to just slip quietly away if I'm getting too tired or sore to party on. We are working on it. Certainly this evening I might come home quite early (unless a couple of glasses of wine does what pain killers can't do) and I have no problem with TLOML staying on especially as we will only be a couple of blocks from home!
I have had a remarkably good run. I managed to avoid colds and flu for well over a year including time spent on two different continents! So I'm going to try and suck it up and have a good evening in spite of having a nasty dose of crud!
There have been times when I have used the analogy of how one feels when one has the flu to describe the nature of the constant low level pain and fatigue that are just part of the baseline for me. When an ordinary (read "healthy") person comes down with a bug they feel sore and tired. They like to rest more and lie down more but they can force themselves to do a strenuous activity if they really must. Welcome to my normal.
So here I am, happier than I have ever been in my life, enjoying paradise with fabulous food, wonderful company, and virtually no stress and feeling really quite crappy. Yesterday was the worst day for the flu'ish feeling. Today just feels like a quite unpleasant flare with the added pleasure of a very sore throat.
There are a lot of bugs in the tropics, ones with multiple legs, not just bacteria and viruses! I know that seems rather obvious but when you have weird skin sensations where you feel like you are being bitten or stung for no good reason, or when you feel things walking on your skin that really aren't there, the added factor of the presence of "actual" bugs makes for a weird mindset. I'm slapping myself too often, getting sudden stabbing pains in a tiny spot and then searching for something that caused it. People could be forgiven for thinking my condition was psychological instead of physiological or neurological (the verdict is still out on that one re Fibromyalgia though the current theory is blaming the central nervous system) when they see me scrounging around looking for imaginary ants, spiders and beetles.
Sooooo... I just took some pain killers and I'm getting my poop in a group for another social engagement this evening. I have been out more since I arrived here last Tuesday than I was in four months in Sydney! It seems that a highly social two thousand can outdo an insular five million hands down. Of course TLOML is very social and involved in all kinds of things and in Sydney I was verging on reclusive. The good thing is that most things are very close to home here. TLOML and I haven't really got the "I need to go home now" signal down yet. I don't like a big fuss and would like to be able to just slip quietly away if I'm getting too tired or sore to party on. We are working on it. Certainly this evening I might come home quite early (unless a couple of glasses of wine does what pain killers can't do) and I have no problem with TLOML staying on especially as we will only be a couple of blocks from home!
I have had a remarkably good run. I managed to avoid colds and flu for well over a year including time spent on two different continents! So I'm going to try and suck it up and have a good evening in spite of having a nasty dose of crud!
Thursday, 19 January 2012
Sweating it out
Phew - I know all my friends up in the Northern Hemisphere are suffering through their winter and I know I have been gloating somewhat about their negative temps. I believe I have earned the right to gloat by spending 7 years in Minnesota and particularly by going skiing one day in jeans and long johns when the temp was minus 10 Fahrenheit (about -23 Celsius). Karma being what it is I suspect my gloating is coming back to haunt me.
It's warm today, really quite warm, one might go so far as to say it is too warm... you might even say hot. Right now it is a very humid 86 F with a "feels like" rating of 95 F... I'm most definitely "all of a glow" and the languid rotation of the ceiling fan is providing scant relief. It's more than partially my fault that I am now glowing (I guess rivulets might count as more than glowing?).
One of the things I failed to mention in my account of the road trip was that the front right turn light assembly (take note of my new and improved lingo acquired while searching online!) fell off the car somewhere on the first day. It appears that the previous owner had failed to clip it back in properly after a minor front end repair. Now Shermie (short for Sherman Tank), my car, is a Volvo, an older model but not showing her age too badly, so parts are quite an expensive proposition. I went downstairs to check exactly what the part looked like and warmed up considerably. The genuine part is just over $300. There is an auto wrecker who "might" be able to get me one for $80, and online - in the US of A I could buy one for $25. It's hard to believe that something performing the same function could range so vastly in price. The dude at Volvo needed the Vin number to be able to search, so with him still holding on the phone I went downstairs again to get the Vin. The second trip down and then up the stairs really kicked in the glow glands!
So I'm off for a tepid shower. Mum always said that to cool down the shower must be tepid because either a hot one or a cold one stimulates blood flow and heats you up. TLOML will be finishing work shortly and I'm looking forward to spending some time with her this afternoon. It's an adjustment, TLOML going back to work, but I think it will be fine. I will have more time to blog, more time to read, and now that I have finally worked out the enrollment system at the University (is that a secret test to see if we are smart enough to go to University?) I will soon be starting school.
I'll be interested to see if the FMS gets better or worse in the heat so far it seems to be much of a muchness but I am dutifully keeping my pain diary (if catching up the last two weeks could be called dutiful...) so if there are any significant changes it should be evident. I do know, for me, that being cold makes everything hurt more. I get more muscle spasms and more joint pain specifically. I'm wondering if the heat might have a bad effect on my fatigue levels... Oh well I'll know soon enough. Any thoughts?
It's warm today, really quite warm, one might go so far as to say it is too warm... you might even say hot. Right now it is a very humid 86 F with a "feels like" rating of 95 F... I'm most definitely "all of a glow" and the languid rotation of the ceiling fan is providing scant relief. It's more than partially my fault that I am now glowing (I guess rivulets might count as more than glowing?).
One of the things I failed to mention in my account of the road trip was that the front right turn light assembly (take note of my new and improved lingo acquired while searching online!) fell off the car somewhere on the first day. It appears that the previous owner had failed to clip it back in properly after a minor front end repair. Now Shermie (short for Sherman Tank), my car, is a Volvo, an older model but not showing her age too badly, so parts are quite an expensive proposition. I went downstairs to check exactly what the part looked like and warmed up considerably. The genuine part is just over $300. There is an auto wrecker who "might" be able to get me one for $80, and online - in the US of A I could buy one for $25. It's hard to believe that something performing the same function could range so vastly in price. The dude at Volvo needed the Vin number to be able to search, so with him still holding on the phone I went downstairs again to get the Vin. The second trip down and then up the stairs really kicked in the glow glands!
So I'm off for a tepid shower. Mum always said that to cool down the shower must be tepid because either a hot one or a cold one stimulates blood flow and heats you up. TLOML will be finishing work shortly and I'm looking forward to spending some time with her this afternoon. It's an adjustment, TLOML going back to work, but I think it will be fine. I will have more time to blog, more time to read, and now that I have finally worked out the enrollment system at the University (is that a secret test to see if we are smart enough to go to University?) I will soon be starting school.
I'll be interested to see if the FMS gets better or worse in the heat so far it seems to be much of a muchness but I am dutifully keeping my pain diary (if catching up the last two weeks could be called dutiful...) so if there are any significant changes it should be evident. I do know, for me, that being cold makes everything hurt more. I get more muscle spasms and more joint pain specifically. I'm wondering if the heat might have a bad effect on my fatigue levels... Oh well I'll know soon enough. Any thoughts?
Monday, 12 December 2011
Health/Love Update - Counting down!
Today I had my last visit for the year to Professor McCool.
.
He, like everyone who sees me, couldn't help but notice the elevation in my mood and energy level. It was an uneventful visit comprised of reports on a series of negatives. They say you can't prove a negative and I suspect that is the problem with rotten old Fibromyalgia. Until they can find some specific physiological symbol we are just a bunch of people with a range of similar symptoms who aren't testing positive to any of the things that could be causing our problems.
Good news was that the MRI was totally clear and my brain (and I resent this comment) "is perfectly normal". Aside from the slight against my exceptionalism it really was very good news.
I don't have any of the odd things he was looking for. There are still some irregular markers of an auto-immune condition in my blood but whatever it is has decided to remain anonymous. He did tell me to go ahead and take the Lyrica prescribed by the Pain Clinic, but he was concerned that it would need to be increased and the Pain Clinic doc had not allowed for that in the script. I was on Lyrica for a while in the US (before I ran out of health insurance) and it had no effect but who knows? It's worth a try.
I have been feeling pretty good lately. Fatigue levels are quite low, baseline pain is manageable and breakthrough pain is nasty but at least it isn't constant. It might not surprise you that this growing thing with TLOML is keeping me pretty excited and upbeat. We are down to counting hours (being inside 3 days). In the last few days we have progressed to talking on Skype.
It's interesting but this relationship has moved through these stages of growth in such a way as to remind me of when The Boy was young. Those of you who are parents will probably identify with this metaphor. You have a baby and it stays whereever you put it then it starts to roll over and sit up and you LOVE the new stage but a part of your mourns the old one... Then the baby starts to walk or crawl and becomes mobile and you LOVE the new phase but you mourn the one that has passed... Then they become fully fledged toddlers and you LOVE etc etc... Then you have a school child and you LOVE etc etc and so on through to adulthood. I distinctly remember the pain of knowing that my baby wasn't a baby any more, my little kid was a teenager, my teenager is a man... I have felt this way during the growth of this relationship... we started with instant messages... moved to texts... to phone calls... to skype... in less than three days we will be together. Each phase has its joys and leaving each stage has been a little bit scary, a little bit sad, and a big bit exciting!
I saw a documentary a while back (I have tried to find information on it unsuccessfully) in which scientists identified scent profiles and who would likely be attracted to them. Then set a bunch of hetero people loose in a cocktail party kind of environment with instructions to sniff the necks of the people of the opposite sex. They then compared the participants statements of how attracted they were to the various opposite sex participants. The interesting thing was that there was a strong correlation with the chemical analyses prediction and the anecdotal reports. Their conclusion was that we are pre-programmed, chemically, to be attracted to certain scents. It appears TLOML and I have only the scratch and sniff component of this relationship to confirm. We are wondering if the scent profile for people who like each other as friends is the same or different... Mostly because we already liked each other all those years ago when we were nearly blank slates.
Between you and me (and the giant internet stranger who might be reading this) I think the pheromone check is almost a formality *Smile*... I just hope I can live up to her expectations.
Stay tuned for more news ... same bat channel... same bat station!
Tuesday, 6 December 2011
Pain Clinic Update
Well, today was the day... I couldn't sleep and woke very early after probably 4 hours of broken sleep. I was very early to the appointment but it did mean I got a great parking spot! (I always say I will never win the lottery because I use up all my luck on finding parking spots!) The hospital is huge and it was still a very long walk through to the clinic (I wonder why they don't have moving footways like the airport?).
First I saw a psychologist and answered about 4,672, no hang on it was 4,676, questions. Next I was meant to see a physiotherapist but the physio was off sick so I ended up with a wait of about an hour and a half before seeing the doctor. I didn't have to exaggerate the pain today, though it was still a pretty good day by and large, all the sitting around was really starting to take a toll by the time I got in to see the doctor.
The doctor was young and very muscular, he was also very understanding and quite irritated by his pager that went off at least 6 times in the hour I spent with him. He was very sweet doing a trigger point examination; he apologized each time I squealed and had to be scraped off the ceiling. He diagnosed me with... wait for it... I hope you are on the edge of your seats...
Fibromyalgia!
Well that was a huge surprise, not the diagnosis I have known that for ages - a medical facility where they believe in FMS!
He has decided to put me back on Lyrica, which did nothing for me in the four and a half months I took it in the US. Who knows, though, the dose might be different, I might respond differently. He is also putting in an order for me to go into hydrotherapy which I think might be terrific except that there is not going to be an opening until next year and ... well... with the developments in my personal life I may well be in a completely different part of the country by the time they get me scheduled in.
The Lyrica is not covered by the government pharmaceutical benefits program but because I got the script filled at the hospital they only charged me the benefits rate which is pretty cool! It also means that I will have to get to the hospital pharmacy at least once a month which is rather inconvenient. Not that I mind if the damn thing is helping!!! I did get the script filled but I have decided not to start taking it until I see Professor McCool on Monday. I just feel like I trust him more to make sure there are not any harmful interactions with the other stuff he has me taking.
By the time I got back to the car I was really dragging pretty badly and I was in a lot of pain. Straight home to the blissful relief of being horizontal. I even had a nap - something I almost never do in the day time. I'm still feeling exhausted and pretty sore but that's it for appointments for this week. Back on the treadmill again with McCool on Monday and McLovely on Tuesday.
First I saw a psychologist and answered about 4,672, no hang on it was 4,676, questions. Next I was meant to see a physiotherapist but the physio was off sick so I ended up with a wait of about an hour and a half before seeing the doctor. I didn't have to exaggerate the pain today, though it was still a pretty good day by and large, all the sitting around was really starting to take a toll by the time I got in to see the doctor.
The doctor was young and very muscular, he was also very understanding and quite irritated by his pager that went off at least 6 times in the hour I spent with him. He was very sweet doing a trigger point examination; he apologized each time I squealed and had to be scraped off the ceiling. He diagnosed me with... wait for it... I hope you are on the edge of your seats...
Fibromyalgia!
Well that was a huge surprise, not the diagnosis I have known that for ages - a medical facility where they believe in FMS!
He has decided to put me back on Lyrica, which did nothing for me in the four and a half months I took it in the US. Who knows, though, the dose might be different, I might respond differently. He is also putting in an order for me to go into hydrotherapy which I think might be terrific except that there is not going to be an opening until next year and ... well... with the developments in my personal life I may well be in a completely different part of the country by the time they get me scheduled in.
The Lyrica is not covered by the government pharmaceutical benefits program but because I got the script filled at the hospital they only charged me the benefits rate which is pretty cool! It also means that I will have to get to the hospital pharmacy at least once a month which is rather inconvenient. Not that I mind if the damn thing is helping!!! I did get the script filled but I have decided not to start taking it until I see Professor McCool on Monday. I just feel like I trust him more to make sure there are not any harmful interactions with the other stuff he has me taking.
By the time I got back to the car I was really dragging pretty badly and I was in a lot of pain. Straight home to the blissful relief of being horizontal. I even had a nap - something I almost never do in the day time. I'm still feeling exhausted and pretty sore but that's it for appointments for this week. Back on the treadmill again with McCool on Monday and McLovely on Tuesday.
Sunday, 4 December 2011
Where's the catch?
Ok... hang on... let me check...
This is strange... I'm not sure how to respond to this... I don't know what to say...
I can't see anything about to slam into me at the moment...
Sssshhhhh... Keep this under your hat
Things are actually going well. (Pause for explosion.)
Ok before I float away on a cloud of euphoria I need to remember to grab my parachute.
Ten days until TLOML arrives from her tropical paradise, jetting into Sydney specially to see MOI!!! My mother always chastised me for wishing my life away when I said things like "I can't WAIT until she gets here!" But it feels like an eternity. Today I didn't have any appointments or any demands or plans so I have just hung out and done some reading and had a long bath.
On the health front I am actually feeling pretty good. My arms are still a little weak and the vertigo is still hanging around so I'm wobbly but pain is the most manageable it has been for a good few months.
You know how when you take your car to the mechanic and say "It makes a grinding sound every time I turn left" and the mechanic does a test drive and it won't make the noise? I suspect that might be going to happen to me on Wednesday. I will be off to the pain clinic with less pain than I have experienced in MONTHS!
Why can't they give people pills full of endorphins? Well I guess it is just a form of self created morphine. I'm sure that's what is making the difference. Talk about a drug of choice! It's interesting in all of the fitness training I did when I was younger (including going all the way through the boot camp at the Police Academy for 4 and 1/2 months) I NEVER once had an endorphin high! I have read that people with Fibromyalgia don't experience that, or was it the bloke in the video, the one from Stanford? Oh well somewhere in the last week or so I have read that FMS endurers don't get the "runners high"... THANK the Goddess/Universe/Herbert that I can get an endorphin high from falling in love!!!
I can't say I feel strong but I am experiencing less pain. I'm toying with the idea of doing something to sabotage myself before Wednesday so that I turn up there feeling as crappy as I normally do. Maybe a game of golf tomorrow if the weather clears? That knocked me out for a week last time I tried it! Ok I'm half kidding. I really am very grateful that I'm feeling OK at the moment. I've lost about 10 lbs in the last three weeks though it feels like more. When I moved back to Oz from the US I didn't bring all the smaller sized jeans that didn't fit me, I figured it was silly carrying things I couldn't wear. Now I really wish I had brought them 'cause I am stuck with all my big jeans. I think a little shopping expedition might be in order tomorrow though I would have to get a great deal cause I am trying not to spend money too. So many competing priorities, as per usual.
Please address all correspondence care of Cloud 9.
This is strange... I'm not sure how to respond to this... I don't know what to say...
I can't see anything about to slam into me at the moment...
Sssshhhhh... Keep this under your hat
Things are actually going well. (Pause for explosion.)
Ok before I float away on a cloud of euphoria I need to remember to grab my parachute.
Ten days until TLOML arrives from her tropical paradise, jetting into Sydney specially to see MOI!!! My mother always chastised me for wishing my life away when I said things like "I can't WAIT until she gets here!" But it feels like an eternity. Today I didn't have any appointments or any demands or plans so I have just hung out and done some reading and had a long bath.
On the health front I am actually feeling pretty good. My arms are still a little weak and the vertigo is still hanging around so I'm wobbly but pain is the most manageable it has been for a good few months.
You know how when you take your car to the mechanic and say "It makes a grinding sound every time I turn left" and the mechanic does a test drive and it won't make the noise? I suspect that might be going to happen to me on Wednesday. I will be off to the pain clinic with less pain than I have experienced in MONTHS!
Why can't they give people pills full of endorphins? Well I guess it is just a form of self created morphine. I'm sure that's what is making the difference. Talk about a drug of choice! It's interesting in all of the fitness training I did when I was younger (including going all the way through the boot camp at the Police Academy for 4 and 1/2 months) I NEVER once had an endorphin high! I have read that people with Fibromyalgia don't experience that, or was it the bloke in the video, the one from Stanford? Oh well somewhere in the last week or so I have read that FMS endurers don't get the "runners high"... THANK the Goddess/Universe/Herbert that I can get an endorphin high from falling in love!!!
I can't say I feel strong but I am experiencing less pain. I'm toying with the idea of doing something to sabotage myself before Wednesday so that I turn up there feeling as crappy as I normally do. Maybe a game of golf tomorrow if the weather clears? That knocked me out for a week last time I tried it! Ok I'm half kidding. I really am very grateful that I'm feeling OK at the moment. I've lost about 10 lbs in the last three weeks though it feels like more. When I moved back to Oz from the US I didn't bring all the smaller sized jeans that didn't fit me, I figured it was silly carrying things I couldn't wear. Now I really wish I had brought them 'cause I am stuck with all my big jeans. I think a little shopping expedition might be in order tomorrow though I would have to get a great deal cause I am trying not to spend money too. So many competing priorities, as per usual.
Please address all correspondence care of Cloud 9.
Monday, 21 November 2011
Lost in Limbo...
I am writing this for the PFAM which is hosted this month by FibroDAZE, Kathy over there is asking about how we cope with new diagnosis.
Right at the moment I am in a place of great uncertainty and I'm picking my way through a minefield of doctors appointments. One of the reasons why there is so much happening at the moment is that my health was sorely neglected when I was in the US. I didn't have any health insurance for my last year there and so I was just muddling on alone.
When I returned to Australia, where, thank the Goddess, we have universal health care I was able to begin to get some of my health issues taken care of (I hoped)... In actual fact so far, in the two and a half months since my return home, I have received a couple of different diagnoses.
Just a tiny bit of background - in 1994 I was incorrectly diagnosed with Osteoarthritis and basically told "welcome to middle age". Then followed several years of dancing with various anti-inflammatory drugs all of which caused strange and unpleasant events (like serious depression and hives) until the doctor finally became concerned that my allergy to NSAIDS was going to result in anaphylactic shock if I kept taking the NSAIDS with an anti-histamine chaser. I then resigned myself to living with constant pain with only over the counter paracetamol/acetaminophen to help. This went on, interrupted by occasional doses of Vicodin, Percoset and Lortab, until 2009 when I was finally diagnosed with Fibromyalgia.
Back here in Australia I have now started to nail down some of the more specific either parallel or contributing conditions. First the Rheumatologist (Professor McAwefullyCute) informed me that I have "An undampened stress response resulting in widespread chronic pain" That's all well and good but it doesn't account for all the other problems that plague me... Next came a brand new diagnosis of Hashimoto's Thyroiditis, diagnosed by the Endocrinologist, and the probability that there is another auto-immune disorder. So off to the Immunologist (Professor McCool) who took enough blood for testing to feed the entire cast of Twilight, and arranged for an MRI.
I feel very unstable about my diagnosis at the moment... I know that McCool is checking for some things that are very frightening like Paraneoplastic Syndrome - which could mean I have Cancer somewhere in my body that is undiagnosed. I have another week to wait before I hear the results of these tests. I know he's looking at Lupus, Addison's, MS, Sjogren's etc etc etc...
When you live with a diagnosis like Fibromyalgia it kind of places you in a difficult position, Because it is a diagnosis of exclusion and to be honest I don't think my doctors in the US really did enough testing to have positively excluded this range of other auto-immune conditions. This places me on the horns of a rather interesting dilemma...
Do I want these tests to find anything?
Anyone who has lived for a long time not knowing why they feel crappy all the time, why they hurt all the time, why they are so tired that shampooing their hair knocks them out for an hour, will know what I mean... There is a part of me that desperately wants to know what is causing all this pain! But I don't want to hear terrifying news that my own body is attacking my brain or that I have Cancer. I would love a new diagnosis if it was something that could be managed... hell I might even get better!
The Hashimoto's diagnosis was good news... something that can be managed reasonably well with non-invasive synthetic hormone pills... easy... I might even feel better than I feel at the moment when the thyroid pills start to take effect... On the down side I am very cognizant that one auto-immune condition frequently leads the way for one or more others.
I guess, in my roundabout way I am trying to say this... A new diagnosis can be a thing of beauty, it can take you from despair to hope in the blink of an eye! It can also be a frightening slap across the face with your mortality.
One week from today I will know much more - until then - welcome to my limbo land.
===
Right at the moment I am in a place of great uncertainty and I'm picking my way through a minefield of doctors appointments. One of the reasons why there is so much happening at the moment is that my health was sorely neglected when I was in the US. I didn't have any health insurance for my last year there and so I was just muddling on alone.
When I returned to Australia, where, thank the Goddess, we have universal health care I was able to begin to get some of my health issues taken care of (I hoped)... In actual fact so far, in the two and a half months since my return home, I have received a couple of different diagnoses.
Just a tiny bit of background - in 1994 I was incorrectly diagnosed with Osteoarthritis and basically told "welcome to middle age". Then followed several years of dancing with various anti-inflammatory drugs all of which caused strange and unpleasant events (like serious depression and hives) until the doctor finally became concerned that my allergy to NSAIDS was going to result in anaphylactic shock if I kept taking the NSAIDS with an anti-histamine chaser. I then resigned myself to living with constant pain with only over the counter paracetamol/acetaminophen to help. This went on, interrupted by occasional doses of Vicodin, Percoset and Lortab, until 2009 when I was finally diagnosed with Fibromyalgia.
Back here in Australia I have now started to nail down some of the more specific either parallel or contributing conditions. First the Rheumatologist (Professor McAwefullyCute) informed me that I have "An undampened stress response resulting in widespread chronic pain" That's all well and good but it doesn't account for all the other problems that plague me... Next came a brand new diagnosis of Hashimoto's Thyroiditis, diagnosed by the Endocrinologist, and the probability that there is another auto-immune disorder. So off to the Immunologist (Professor McCool) who took enough blood for testing to feed the entire cast of Twilight, and arranged for an MRI.
I feel very unstable about my diagnosis at the moment... I know that McCool is checking for some things that are very frightening like Paraneoplastic Syndrome - which could mean I have Cancer somewhere in my body that is undiagnosed. I have another week to wait before I hear the results of these tests. I know he's looking at Lupus, Addison's, MS, Sjogren's etc etc etc...
When you live with a diagnosis like Fibromyalgia it kind of places you in a difficult position, Because it is a diagnosis of exclusion and to be honest I don't think my doctors in the US really did enough testing to have positively excluded this range of other auto-immune conditions. This places me on the horns of a rather interesting dilemma...
Do I want these tests to find anything?
Anyone who has lived for a long time not knowing why they feel crappy all the time, why they hurt all the time, why they are so tired that shampooing their hair knocks them out for an hour, will know what I mean... There is a part of me that desperately wants to know what is causing all this pain! But I don't want to hear terrifying news that my own body is attacking my brain or that I have Cancer. I would love a new diagnosis if it was something that could be managed... hell I might even get better!
The Hashimoto's diagnosis was good news... something that can be managed reasonably well with non-invasive synthetic hormone pills... easy... I might even feel better than I feel at the moment when the thyroid pills start to take effect... On the down side I am very cognizant that one auto-immune condition frequently leads the way for one or more others.
I guess, in my roundabout way I am trying to say this... A new diagnosis can be a thing of beauty, it can take you from despair to hope in the blink of an eye! It can also be a frightening slap across the face with your mortality.
One week from today I will know much more - until then - welcome to my limbo land.
Monday, 14 November 2011
The Sophie's Choice of Illness...
I had an interesting conversation with the Immunologist today. We were discussing the possible use of steroids to alleviate my pain.
He was a REALLY cool guy and I totally appreciated his direct, human approach especially when he said, after listening to my description of how I feel, "So you feel like shit?"
"YES!" I responded with more animation than my energy level appreciated. I was just so, bloody, excited to have a specialist (a professor no less) really listen.
Anyway, the steroid discussion... Now remember by now we have a rapport and I think he is shooting straight with me...
"Would you take ten years pain free if it meant that you would develop diabetes and die prematurely?"
"Ooooh, I'm not sure about that. I only recently lost a close friend to complications from diabetes and it was not pretty."
"I would. But that's just my personal opinion, it's an individual choice."
This is a conversation I could never in my weirdest, most intoxicated, most bad-acid-tripping dreams have imagined being a party to.
Fortunately for the moment it is a pre-conversation and I don't have to make that decision right now.
Tomorrow more bloods, The pathology request form is literally so full of things he is testing for that he wrote in the margins and in the space above and then drew a big circle around it to make sure they knew they were all tests, He chased (I use the term loosely because a greyhound really doesn't have to chase a snail) me out to the reception to add a few extras that had just occurred to him. Some of the things he is testing for are pretty scary and for now I really don't want to get too freaked out about things like brain-eating antibodies and cancer-companion-inmuno-oddities, so we'll just have to wait and see. He did seem pretty interested in Sjogren's. The good thing is he is looking and it could be good news if he found something and it could be good news if he didn't and it could be terrifying if he found some other thing and depressing if he finds nothing... so win/win - lose/lose who knows?
He is also sending me for an MRI of my brain - which no one has bothered to do before, I know there is a brain in there, I have a picture to prove it, because I had an ear infection they thought was eating into my brain back in 2007 and they did a CAT scan then.
I think I will call him Professor McCool 'cause he was really a pretty cool dude, I might start calling him HOUSE if he figures this out!...He spent an hour and fifteen minutes with me and I think that is pretty amazing, all on the government health care system.
Any of my US friends who think that Universal Health Care would give you a lower standard of care than the system you have now is Captain Rats (sorry, you are certifiable). In the USA I NEVER, even with full medical insurance, received this level of care or this degree of genuine inquiry AND in spite of paying huge amounts of money for coverage every paycheck I was still co-payed to death!!! Health care is a business in the US and a service here... the whole mindset is different! Not that it is perfect here, nothing is. But a public patient nobody, like me, can still get in to see the best and brightest in the country and that is really quite impressive.
(PS Just Kidding about the acid trips)
He was a REALLY cool guy and I totally appreciated his direct, human approach especially when he said, after listening to my description of how I feel, "So you feel like shit?"
"YES!" I responded with more animation than my energy level appreciated. I was just so, bloody, excited to have a specialist (a professor no less) really listen.
Anyway, the steroid discussion... Now remember by now we have a rapport and I think he is shooting straight with me...
"Would you take ten years pain free if it meant that you would develop diabetes and die prematurely?"
"Ooooh, I'm not sure about that. I only recently lost a close friend to complications from diabetes and it was not pretty."
"I would. But that's just my personal opinion, it's an individual choice."
This is a conversation I could never in my weirdest, most intoxicated, most bad-acid-tripping dreams have imagined being a party to.
Fortunately for the moment it is a pre-conversation and I don't have to make that decision right now.
Tomorrow more bloods, The pathology request form is literally so full of things he is testing for that he wrote in the margins and in the space above and then drew a big circle around it to make sure they knew they were all tests, He chased (I use the term loosely because a greyhound really doesn't have to chase a snail) me out to the reception to add a few extras that had just occurred to him. Some of the things he is testing for are pretty scary and for now I really don't want to get too freaked out about things like brain-eating antibodies and cancer-companion-inmuno-oddities, so we'll just have to wait and see. He did seem pretty interested in Sjogren's. The good thing is he is looking and it could be good news if he found something and it could be good news if he didn't and it could be terrifying if he found some other thing and depressing if he finds nothing... so win/win - lose/lose who knows?
He is also sending me for an MRI of my brain - which no one has bothered to do before, I know there is a brain in there, I have a picture to prove it, because I had an ear infection they thought was eating into my brain back in 2007 and they did a CAT scan then.
I think I will call him Professor McCool 'cause he was really a pretty cool dude, I might start calling him HOUSE if he figures this out!...He spent an hour and fifteen minutes with me and I think that is pretty amazing, all on the government health care system.
Any of my US friends who think that Universal Health Care would give you a lower standard of care than the system you have now is Captain Rats (sorry, you are certifiable). In the USA I NEVER, even with full medical insurance, received this level of care or this degree of genuine inquiry AND in spite of paying huge amounts of money for coverage every paycheck I was still co-payed to death!!! Health care is a business in the US and a service here... the whole mindset is different! Not that it is perfect here, nothing is. But a public patient nobody, like me, can still get in to see the best and brightest in the country and that is really quite impressive.
(PS Just Kidding about the acid trips)
Saturday, 12 November 2011
The line between acceptance and giving up.
I really wish I had answers for this...
Wow there are so many things I want to talk about in this post that I don't know where to begin. Perhaps with a story...
I once had a friend who was functioning in society fairly well but clearly had some difficulty maintaining a consistent approach to her life. Then she received her diagnosis and suddenly everything became worse. She began to embody and experience all the worst symptoms of her illness. Her attempts to lead a normal life fell by the wayside as she quite tangibly embraced her diagnosis. I am not judging her. I know it had always been hard.
Back in 2009 I received a diagnosis of Fibromyalgia and in view of my friend's experience I decided not to research FMS and not to read any kind of list of symptoms. I was vehemently opposed to "embracing the diagnosis". So instead of reading the symptoms I listed the things I was experiencing and then investigated to see if they were FMS related.
Pain - Check
Fatigue - Check
Vertigo - Check
Poor balance - Check
Digestion issues - Check
Skin sensitivities - Check
Strange over the top startle/shock response - no check?
Trouble Swallowing - no check?
Clumsiness - Check
I just didn't want to subliminally convince myself to develop more problems than I already had. I think this was probably a stupid approach but I was quite determined at the time.
Of course time passes, and things started to get worse, and I began to have to accept that I really couldn't ignore these problems. This led to me wanting to find my community and wanting to relate to other people who really understood what was going on. Those of you who know me personally know that I am a curious person and that I process and assimilate information very easily and really without trying. So naturally the idea that I could not be educated about FMS became even more ridiculous when I reached out to others.
Still, as I have mentioned elsewhere, I had some strange delusion that coming home to Australia would make everything better... somewhere in my mind I saw myself here (in Oz) as the same person I was who left here in 1999. I'm not.
Please note that this blog is the product of a crappy, exhausted, painful day. It isn't always like this and I don't always feel this bad.
I think my twisted idea of not learning so as not to embrace etc was just one form of denial, the whole 'healthy when I come home' thing was another... I also think that my body is demanding that I accept what's going on and I think I am starting to do that. (All this blogging helps BTW). But there is a side effect of acceptance.
When I accept that I need help, in any form, I can relax a little from the constant battle to either hide my problems or "tough it out" and I now wonder if that was what I was seeing in my friend all those years ago. Which makes me wonder if it is a good thing at all?
This morning I drove The Boy to the train station (he is off back up the coast to go to his school formal (the prom for my North American friends)) and I got out of the car and yelped in pain as my back reacted very badly to the change from being seated to standing. I waited a few moments for the worst of the pain to pass and for the rest of my body to acclimate to standing. Then carefully and tentatively I started to walk using my walking stick. By now The Boy was 30 feet away from the car on the way into the train station. He stopped and waited a bit and teased me about looking like an old grandma (not that I don't have many friends younger than I who have grand children) and then he asked me an interesting question. He asked if I use the cane so that people don't bump into me. It made me think about all the reasons I use the cane... sometimes... and I don't always use it... but it also made me think of the visual message that using it sends to others and the fact that it does have a supplementary benefit of making people steer clear. I don't cope well with being bumped, my balance is terrible, every contact with my body hurts, if I fall it is excruciating (and I do fall too often), and I have anxiety about people, so I have a HUGE personal space. The walking stick gives me more room and that is a good thing. But it also allows me to let my weakness show and that is something I have avoided doing for my entire life. Remember I was raised by a super stoic...
I guess I have rambled on long enough in this blog but I could go on for a long time yet if I let myself... I guess I am just wondering how closely giving up or giving in is related to acceptance...
I read a really interesting little book last year by Richard Bach, the bloke who wrote Jonathan Livingstone Seagull, it was called 'Illusions: The Adventures of a Reluctant Messiah' and it was non religiously spiritual, full of really amazing messages about life the universe and everything... not the kind of thing I usually read but it had, LITERALLY, thrown itself into my path, it turned up in my car with no known source. The salient point here is that the book began with a long 'hand written' list about The Master and a parable that related to creatures that lived on the bottom of a crystal river and clung to the rocks as the raging current ran over them until one creature released his/her grip on the bottom and was swept on by the current. This creature met other creatures whose lives were different and experienced adventures and growth that clinging to the river bottom could never have provided... It was a great read which unfortunately I left behind in the US. I am that creature. I have thrown myself on the mercy of the current.
In spite of this I am still struggling with these issues... Is letting your pain show because you are becoming more accepting tantamount to giving up the fight? How much of the fight was really about maintaining my identity as a healthy vital person? How much of the fight was really about my ego and about what other people think? How much of the fight was really about trying to cling to the bottom like all the other creatures?
Wow there are so many things I want to talk about in this post that I don't know where to begin. Perhaps with a story...
I once had a friend who was functioning in society fairly well but clearly had some difficulty maintaining a consistent approach to her life. Then she received her diagnosis and suddenly everything became worse. She began to embody and experience all the worst symptoms of her illness. Her attempts to lead a normal life fell by the wayside as she quite tangibly embraced her diagnosis. I am not judging her. I know it had always been hard.
Back in 2009 I received a diagnosis of Fibromyalgia and in view of my friend's experience I decided not to research FMS and not to read any kind of list of symptoms. I was vehemently opposed to "embracing the diagnosis". So instead of reading the symptoms I listed the things I was experiencing and then investigated to see if they were FMS related.
Pain - Check
Fatigue - Check
Vertigo - Check
Poor balance - Check
Digestion issues - Check
Skin sensitivities - Check
Strange over the top startle/shock response - no check?
Trouble Swallowing - no check?
Clumsiness - Check
I just didn't want to subliminally convince myself to develop more problems than I already had. I think this was probably a stupid approach but I was quite determined at the time.
Of course time passes, and things started to get worse, and I began to have to accept that I really couldn't ignore these problems. This led to me wanting to find my community and wanting to relate to other people who really understood what was going on. Those of you who know me personally know that I am a curious person and that I process and assimilate information very easily and really without trying. So naturally the idea that I could not be educated about FMS became even more ridiculous when I reached out to others.
Still, as I have mentioned elsewhere, I had some strange delusion that coming home to Australia would make everything better... somewhere in my mind I saw myself here (in Oz) as the same person I was who left here in 1999. I'm not.
Please note that this blog is the product of a crappy, exhausted, painful day. It isn't always like this and I don't always feel this bad.
I think my twisted idea of not learning so as not to embrace etc was just one form of denial, the whole 'healthy when I come home' thing was another... I also think that my body is demanding that I accept what's going on and I think I am starting to do that. (All this blogging helps BTW). But there is a side effect of acceptance.
When I accept that I need help, in any form, I can relax a little from the constant battle to either hide my problems or "tough it out" and I now wonder if that was what I was seeing in my friend all those years ago. Which makes me wonder if it is a good thing at all?
This morning I drove The Boy to the train station (he is off back up the coast to go to his school formal (the prom for my North American friends)) and I got out of the car and yelped in pain as my back reacted very badly to the change from being seated to standing. I waited a few moments for the worst of the pain to pass and for the rest of my body to acclimate to standing. Then carefully and tentatively I started to walk using my walking stick. By now The Boy was 30 feet away from the car on the way into the train station. He stopped and waited a bit and teased me about looking like an old grandma (not that I don't have many friends younger than I who have grand children) and then he asked me an interesting question. He asked if I use the cane so that people don't bump into me. It made me think about all the reasons I use the cane... sometimes... and I don't always use it... but it also made me think of the visual message that using it sends to others and the fact that it does have a supplementary benefit of making people steer clear. I don't cope well with being bumped, my balance is terrible, every contact with my body hurts, if I fall it is excruciating (and I do fall too often), and I have anxiety about people, so I have a HUGE personal space. The walking stick gives me more room and that is a good thing. But it also allows me to let my weakness show and that is something I have avoided doing for my entire life. Remember I was raised by a super stoic...
I guess I have rambled on long enough in this blog but I could go on for a long time yet if I let myself... I guess I am just wondering how closely giving up or giving in is related to acceptance...
I read a really interesting little book last year by Richard Bach, the bloke who wrote Jonathan Livingstone Seagull, it was called 'Illusions: The Adventures of a Reluctant Messiah' and it was non religiously spiritual, full of really amazing messages about life the universe and everything... not the kind of thing I usually read but it had, LITERALLY, thrown itself into my path, it turned up in my car with no known source. The salient point here is that the book began with a long 'hand written' list about The Master and a parable that related to creatures that lived on the bottom of a crystal river and clung to the rocks as the raging current ran over them until one creature released his/her grip on the bottom and was swept on by the current. This creature met other creatures whose lives were different and experienced adventures and growth that clinging to the river bottom could never have provided... It was a great read which unfortunately I left behind in the US. I am that creature. I have thrown myself on the mercy of the current.
In spite of this I am still struggling with these issues... Is letting your pain show because you are becoming more accepting tantamount to giving up the fight? How much of the fight was really about maintaining my identity as a healthy vital person? How much of the fight was really about my ego and about what other people think? How much of the fight was really about trying to cling to the bottom like all the other creatures?
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