This blog is being written for the PFAM Blog Carnival hosted this month at Bed, Body and Beyond.
Writers write.
I don't always refer to myself as a writer because I have had long periods in my life when I was not writing. At the moment I am most definitely a writer.
When I think back over the times I have identified as a writer a few moments stand out. Back in the early 1990's I was reading a bunch of lesbian detective novels, read toss, read toss, read toss... I was burning through them. Then one day I just thought, "I could write a better book than this!" So I sat down and wrote a novel. It was never published, I didn't really try, the act of completing it was the reward. Then I went back to school and got a degree in Administrative Leadership and one of my professors chose to publish two of my academic papers in his course books for the following two years. I clearly remember sitting in the heat dressed in cap and gown and the young man beside me saying he had read my papers and he said "How do you make it all make sense? Are you a writer or something?" His question brought me up short and made me think.
Am I a writer? I had taken for granted, up til then, the ability I have to express cohesively in this written word form. That was the beginning of my awakening as regards writing. That was the moment when I began to realize that not everyone can do this. Since that time I have written millions of words. Another novel (unpublished by choice), a business book (published), hundreds of short articles for various outlets, countless presentations, seminars, speeches, and masses of marketing materials (I rather like alliteration!). Gradually I have come to realize just how fortunate I am to have this gift. I take praise of my writing with grace but also with rebuttal as I really think it is a gift and I have only made a minuscule effort to refine it. I'm just lucky. I can write anything (except songs which always turn out so corny that I embarrass myself!), technical writing, creative writing, short, long, fact, fiction, academic, irreverent, poetry, prose -- pretty much anything I want to do. I'm just very lucky.
So why do I write? I write because I can. I write because it helps me to clarify my thoughts. I am a verbal processor. My ideas and thoughts coalesce as I express them and for me writing is a verbal communication in that I write the way I talk. People who know me who have read any of my books tell me that they feel I am sitting beside them reading aloud - my voice is very evident.
I write to process, I write to share, I write to soothe myself, I write to make myself smile, I write to show my love, I write to reveal my heart, I write to enlighten, I write to pass the time, I write to analyze. Most of all I write because I can, because I was given a gift that I have not earned and I think it would be neglectful of me to squander it.
Wednesday, 30 November 2011
Tuesday, 29 November 2011
Gonna Eat Worms hits the big 50
Well well well... my 50th post. How things have changed in the short time I have been writing this blog... and then how they haven't...
I have had a weird day today with some very strange sensations going on. My arms are still feeling very weak from the exertion last Friday night which is a little worrisome, I feel like I need something to support my wrists and to be honest if the keyboard became difficult for me I would totally freak out!!! The fatigue has eased a little in general and it was quite a good day pain wise too but OMG the damn vertigo has picked up.
The Boy and I went to lunch together and then wandered slowly through a department store trying to find an inexpensive (but very classy) gift for his boy friend. My poor darling I was having regular head spins and he had to keep waiting for me or worse yet I would put my hand on his shoulder for balance! "Why do you keep touching me?" he grumbled (as only an 18 year old can), though he shouldn't be surprised I have been using his shoulder for balance up and down stairs for years! I'm a bit scared of stairs.
Today I have had strange skin sensations all day. This morning there were invisible bugs walking all over my legs. I kept slapping at them but I knew they weren't there. I feel like I have the DTs except that I haven't had a drink in over a week! Not that I drink much ever really. So the imaginary bugs were replaced by patches of burning skin and then in interesting combination of creepy crawlies and burning patches. Shit, this stuff is fun! Something new and different nearly every day... well mum always said "Variety is the spice of life".
Gonna Eat Worms has turned out to be a variety laced blog, everything from philosophy, to family dysfunction, to medical news, to politics, to developments in my love life! I find this act of clarifying my thoughts into readable bite sized pieces very therapeutic. I also have really benefited from the comments people make here. My little band of followers has grown from just two personal friends to 18 in total and perhaps a few more who read but don't follow. I'm very grateful to you guys who bother to read this and I am amazed by the warmth and compassion I have been shown. I really feel that this little open diary has given me new friends and the broadest of global horizons.
Thank you to everyone who reads this.
I have had a weird day today with some very strange sensations going on. My arms are still feeling very weak from the exertion last Friday night which is a little worrisome, I feel like I need something to support my wrists and to be honest if the keyboard became difficult for me I would totally freak out!!! The fatigue has eased a little in general and it was quite a good day pain wise too but OMG the damn vertigo has picked up.
The Boy and I went to lunch together and then wandered slowly through a department store trying to find an inexpensive (but very classy) gift for his boy friend. My poor darling I was having regular head spins and he had to keep waiting for me or worse yet I would put my hand on his shoulder for balance! "Why do you keep touching me?" he grumbled (as only an 18 year old can), though he shouldn't be surprised I have been using his shoulder for balance up and down stairs for years! I'm a bit scared of stairs.
Today I have had strange skin sensations all day. This morning there were invisible bugs walking all over my legs. I kept slapping at them but I knew they weren't there. I feel like I have the DTs except that I haven't had a drink in over a week! Not that I drink much ever really. So the imaginary bugs were replaced by patches of burning skin and then in interesting combination of creepy crawlies and burning patches. Shit, this stuff is fun! Something new and different nearly every day... well mum always said "Variety is the spice of life".
Gonna Eat Worms has turned out to be a variety laced blog, everything from philosophy, to family dysfunction, to medical news, to politics, to developments in my love life! I find this act of clarifying my thoughts into readable bite sized pieces very therapeutic. I also have really benefited from the comments people make here. My little band of followers has grown from just two personal friends to 18 in total and perhaps a few more who read but don't follow. I'm very grateful to you guys who bother to read this and I am amazed by the warmth and compassion I have been shown. I really feel that this little open diary has given me new friends and the broadest of global horizons.
Thank you to everyone who reads this.
Monday, 28 November 2011
The Universe at work...
It's a strange thing this Universe... You can call it God or Allah or Buddha or Herbert for all I care... I tend to call anything that seems to have greater power than we mere mortals "The Universe". Back in mid October I wrote about the kind of pessimistic optimist I can be and then showing my inconsistency only a few days later I sent some wishes out into The Universe . I was wishing for the woman of my dreams to come into my life. Again on 11/11/11 I posted a blog with a wish list which included the wish "to love and to be loved in return".
There have been some times in my life when I have been 100% certain that forces were at work that were bigger and more powerful than anything a human can cause. Once this was a "Universe" bitch slap designed to make me pay attention, another time it was a serendipitous moment of stark perfection. To be honest I often think I am getting messages and that I am too dumb to acknowledge them until it becomes REALLY obvious and then I think "Duh. Of course!"
For quite some time there have been things going on that have brought someone I used to know into the front of my mind. I have been calling her The New Connection in this blog for a while now, but I think I need to change her tagline... More on that later though...
I'm not sure how I came to find her on facebook about a year ago but she accepted my friend request. We didn't message or anything... maybe I said hi on her wall... I NEVER saw her online and I am online a LOT. Then I moved home to Australia and started reconnecting with old friends including The Best Friend who of course knew The New Connection from when we were all in high school together... so naturally her name came up... Then a somewhat strange thing happened when I got a facebook friend suggestion for a young boy who shares her last name and it said we had two mutual friends, her nephew is in the same school class as The Horsewoman's daughter (who I live with). She just seemed to be "front of mind" far more than at any other time.
I'm sure you know that facebook tells you when people have a birthday and I received notification of hers. So I left a birthday message on her wall. Later that day, for the first time ever, I saw her come online. I vacillated between wanting to say hello and not wanting to intrude. I even started writing and stopped before starting again... Then I thought "Oh what the hell I'll just say a quick happy birthday". This was the day after I wrote my 11/11/11 wish list.
Things suddenly stopped being normal. I am really quite certain that at that moment something enormous dropped into place. Giant gears in the machinery of my life meshed. Jigsaw puzzle pieces fell into place. The erratic became calm. The poles were reversed. Life changed.
When I look back over my adult life, all the time that The New Connection and I were not connected, I can see that I have had two really good chances at finding/making happiness. The first was my first serious love, a really wonderful woman with whom I was incredibly compatible, but I was very young and too damn scattered and stupid to know a good thing when I saw it and I screwed it up. About seven years after that I began a relationship that was to last almost ten years. That relationship was very comfortable but it stagnated and we grew in different directions, I had wild oats to sow and adventures that still needed to take place. I loved and still love both of these beautiful women and I have had the pleasure of seeing them both since I came home.
As little as three weeks ago I genuinely believed that I would never have another chance to find that kind of relationship. Then IT happened. We started talking and we haven't stopped. First on chat, then text, and then on the phone. At other times in my life when I have had relationships develop online I have always had that niggling doubt, that wondering if ... well if she has two heads, if she is a lunatic (she often was), if she has more than one personality and I'm only seeing Dr Jekyll while Ms Hyde lurks in the shadows waiting to take over as soon as I have made some kind of commitment! There are no niggling doubts this time. I know her, even though we have not seen each other since we were girls, I still know her.
It's interesting, I think, that when you are just emerging from school into your adult life you are in some ways a clean slate. I know that most of us carry some scars from our childhoods but I kind of mean that we are our real selves. Then we embark on life and the battles and experiences we have shape us in a variety of ways. Yet somehow when you reach a certain point in your life you stop playing other people's games and you begin to shed the elements of your personality that were assumed or adopted to please others. You distill down to a more raw version of yourself with an attitude of "here I am - like it or lump it". In some strange way I think we are again more truly living as our authentic selves than we have since childhood.
So here it is, The New Connection. We are both happy alone and neither of us needs another person to complete us - and yet we are irresistibly drawn towards each other. We both have an overwhelming sense that this is "right" that we "belong together". Against the caution of our friends, and ourselves for that matter, we have both decided to just enjoy this experience and let it play out however it is meant to play out. We have agreed that the worst that can come of this is a really lovely friendship. We have agreed to take the responsibility for our own emotions in the event that something causes this to take a different path. We have agreed that regardless of what happens we will love each other for this time if for nothing else. We're big girls all grown up and able to handle it if something goes amiss. We're big girls falling in love.
Soooo... From now on The New Connection is going to be known as TLOML. My mother always said (in reference to trying to achieve something) "Punt high and follow on!" (I think it is a football metaphor LOL) So here is my high punt. The New Connection - The Love of My Life. (And if I turn out to be wrong you can all tell me I'm a hopeless romantic and, as Rodgers and Hammerstein would say, a cockeyed optimist.)
There have been some times in my life when I have been 100% certain that forces were at work that were bigger and more powerful than anything a human can cause. Once this was a "Universe" bitch slap designed to make me pay attention, another time it was a serendipitous moment of stark perfection. To be honest I often think I am getting messages and that I am too dumb to acknowledge them until it becomes REALLY obvious and then I think "Duh. Of course!"
For quite some time there have been things going on that have brought someone I used to know into the front of my mind. I have been calling her The New Connection in this blog for a while now, but I think I need to change her tagline... More on that later though...
I'm not sure how I came to find her on facebook about a year ago but she accepted my friend request. We didn't message or anything... maybe I said hi on her wall... I NEVER saw her online and I am online a LOT. Then I moved home to Australia and started reconnecting with old friends including The Best Friend who of course knew The New Connection from when we were all in high school together... so naturally her name came up... Then a somewhat strange thing happened when I got a facebook friend suggestion for a young boy who shares her last name and it said we had two mutual friends, her nephew is in the same school class as The Horsewoman's daughter (who I live with). She just seemed to be "front of mind" far more than at any other time.
I'm sure you know that facebook tells you when people have a birthday and I received notification of hers. So I left a birthday message on her wall. Later that day, for the first time ever, I saw her come online. I vacillated between wanting to say hello and not wanting to intrude. I even started writing and stopped before starting again... Then I thought "Oh what the hell I'll just say a quick happy birthday". This was the day after I wrote my 11/11/11 wish list.
Things suddenly stopped being normal. I am really quite certain that at that moment something enormous dropped into place. Giant gears in the machinery of my life meshed. Jigsaw puzzle pieces fell into place. The erratic became calm. The poles were reversed. Life changed.
When I look back over my adult life, all the time that The New Connection and I were not connected, I can see that I have had two really good chances at finding/making happiness. The first was my first serious love, a really wonderful woman with whom I was incredibly compatible, but I was very young and too damn scattered and stupid to know a good thing when I saw it and I screwed it up. About seven years after that I began a relationship that was to last almost ten years. That relationship was very comfortable but it stagnated and we grew in different directions, I had wild oats to sow and adventures that still needed to take place. I loved and still love both of these beautiful women and I have had the pleasure of seeing them both since I came home.
As little as three weeks ago I genuinely believed that I would never have another chance to find that kind of relationship. Then IT happened. We started talking and we haven't stopped. First on chat, then text, and then on the phone. At other times in my life when I have had relationships develop online I have always had that niggling doubt, that wondering if ... well if she has two heads, if she is a lunatic (she often was), if she has more than one personality and I'm only seeing Dr Jekyll while Ms Hyde lurks in the shadows waiting to take over as soon as I have made some kind of commitment! There are no niggling doubts this time. I know her, even though we have not seen each other since we were girls, I still know her.
It's interesting, I think, that when you are just emerging from school into your adult life you are in some ways a clean slate. I know that most of us carry some scars from our childhoods but I kind of mean that we are our real selves. Then we embark on life and the battles and experiences we have shape us in a variety of ways. Yet somehow when you reach a certain point in your life you stop playing other people's games and you begin to shed the elements of your personality that were assumed or adopted to please others. You distill down to a more raw version of yourself with an attitude of "here I am - like it or lump it". In some strange way I think we are again more truly living as our authentic selves than we have since childhood.
So here it is, The New Connection. We are both happy alone and neither of us needs another person to complete us - and yet we are irresistibly drawn towards each other. We both have an overwhelming sense that this is "right" that we "belong together". Against the caution of our friends, and ourselves for that matter, we have both decided to just enjoy this experience and let it play out however it is meant to play out. We have agreed that the worst that can come of this is a really lovely friendship. We have agreed to take the responsibility for our own emotions in the event that something causes this to take a different path. We have agreed that regardless of what happens we will love each other for this time if for nothing else. We're big girls all grown up and able to handle it if something goes amiss. We're big girls falling in love.
Soooo... From now on The New Connection is going to be known as TLOML. My mother always said (in reference to trying to achieve something) "Punt high and follow on!" (I think it is a football metaphor LOL) So here is my high punt. The New Connection - The Love of My Life. (And if I turn out to be wrong you can all tell me I'm a hopeless romantic and, as Rodgers and Hammerstein would say, a cockeyed optimist.)
And now over to Displaced on the Health Check Desk
Well it was a beautiful day in Sydney to visit the Immunologist Professor McCool. Good news on most fronts with several nasty conditions being ruled out. Prediabetes was confirmed with findings of both high glucose and high insulin so dietary changes are in the cards for Displaced. Hashimoto's reconfirmed (but with lower levels of antibodies which is interesting). I also tested positive for Gastric Parietal Antibodies which can be associated with atrophic gastritis and with a B 12 deficiency (but my B 12 levels were ok). (I thought there were only two Bananas in Pajamas, B1 and B2, -- who the hell knew they were up to twelve!!!)
Unfortunately the radiographers had not yet made the MRI report available but Cool McCool had a glance through the hard copies of the scans and said he couldn't see anything that wasn't meant to be there. The thing in my brain that looked like a bobby pin was pronounced to be a flaw in the film not a miracle worthy of a Lifetime movie.
Off I staggered to the pathology department to have more bloods taken, only seven vials this time, among the things that are being tested for is Myasthenia Gravis (an auto immune condition meaning muscle weakness) and heaven only knows what else he is looking for.
I'm feeling ok about the results except for the prediabetes. The best thing I can do for that is to exercise more but my muscles are so badly reactive to exercise at the moment I don't know how I am going to do that. I got a pretty severe lecture from The Horsewoman about starting to change my diet and my activity level. I'm still experiencing muscle weakness and pain on use from my activity on Friday night. My arms are still super sore. Otherwise a pretty good day!
Unfortunately the radiographers had not yet made the MRI report available but Cool McCool had a glance through the hard copies of the scans and said he couldn't see anything that wasn't meant to be there. The thing in my brain that looked like a bobby pin was pronounced to be a flaw in the film not a miracle worthy of a Lifetime movie.
Off I staggered to the pathology department to have more bloods taken, only seven vials this time, among the things that are being tested for is Myasthenia Gravis (an auto immune condition meaning muscle weakness) and heaven only knows what else he is looking for.
I'm feeling ok about the results except for the prediabetes. The best thing I can do for that is to exercise more but my muscles are so badly reactive to exercise at the moment I don't know how I am going to do that. I got a pretty severe lecture from The Horsewoman about starting to change my diet and my activity level. I'm still experiencing muscle weakness and pain on use from my activity on Friday night. My arms are still super sore. Otherwise a pretty good day!
Sunday, 27 November 2011
Emotion cocktail
Two shots of apprehension
One shot of exhaustion
Combine with three shots of wowee!
= Displaced ... shaken not stirred!
Tomorrow is now today and I see McCool for the results... I'm feeling good and hopeful I don't think he is going to find anything super scary and maybe he will find nothing at all.
My arms are still paying me back for helping on Friday night at the Shabbat Dinner (which was to raise money for the campaign to stop violence against women which I consider a VERY worthy cause)
The New Connection is growing and thrilling me with hope and potential. I am surfing on a wave or amazement that a woman as lovely as she could possibly be interested in moi! It's getting quite serious quite quickly (if you can call hours of laughter on the phone serious and knowing each other for 33 years quick). If you recall I have been making my wish for her on these pages for a while now... This might just be THE ONE.
Well done Universe!!! Good Job!
One shot of exhaustion
Combine with three shots of wowee!
= Displaced ... shaken not stirred!
Tomorrow is now today and I see McCool for the results... I'm feeling good and hopeful I don't think he is going to find anything super scary and maybe he will find nothing at all.
My arms are still paying me back for helping on Friday night at the Shabbat Dinner (which was to raise money for the campaign to stop violence against women which I consider a VERY worthy cause)
The New Connection is growing and thrilling me with hope and potential. I am surfing on a wave or amazement that a woman as lovely as she could possibly be interested in moi! It's getting quite serious quite quickly (if you can call hours of laughter on the phone serious and knowing each other for 33 years quick). If you recall I have been making my wish for her on these pages for a while now... This might just be THE ONE.
Well done Universe!!! Good Job!
Saturday, 26 November 2011
Inspiration
I am writing this for the November Disability Blog Carnival and the question posed relates to inspiration...
"Inspiration" and worse yet "inspirational" are annoying trigger words for me especially when used in the media. It always makes me feel that it is in some way belittling those of us who are not climbing Everest or running across Europe.
Many years ago, long before I had any inkling of myself as a person with a disability, I was doing some research into spinal cord injuries and I read and learned an enormous amount. In the course of these inquiries I came to meet two women with SCI's. One fit the complete definition of "Inspirational" she had quite a high level of injury and yet was an Olympic athlete. She juggled a high-powered career with public appearances and published writing. Yet when I spoke with her and interviewed her I found her comments a bit snarky, I might go so far as to say that she had tickets on herself and she made rather derogatory comments about the second woman I met. Comments to the effect of "If I had her level of injury I would be doing so much more than she is!" The second woman was gentle and kind. She was open about dealing with the breakup of her marriage, she worked in a capacity that enabled her to help others who were newly paralyzed. Her quiet determination to rebuild her life and her empathetic kindness touched me very deeply.
So who was inspiring?
NOT the achievement driven superstar, that's for sure!
Inspiration is a factor that is completely subjective. The media may well attempt to dictate to us who is and who is not inspirational but the fact of the matter is that nothing is inspirational unless it actually causes an effective change in the way of thinking or the actions of the person who is inspired... ergo one must be inspired to DO or to THINK something as a result of your contact with the source of inspiration.
I find that I am most inspired by those who quietly get on with their lives, who make the best of bad situations, who give what they have to give regardless of how much or how little it may be. These people are rarely found in two page spreads in magazines or in the "human interest" segments of "news" programs, some of them may never leave their bedrooms but they are reaching out and giving in the ways they can, with love and warmth and humour.
I am inspired by many of my blogging friends, their quiet determination, their humour in adversity - most especially those who continue to give to others and to agitate for our rights as disabled people and as humans while still battling with their own problems.
"Inspiration" - overworked, overused, inappropriately applied far too often, bandied about with abandon and yet... the underlying meaning is still so significant and important. I find the quiet dignity of ordinary people who are dealing gracefully with extraordinary difficulties to be my inspiration.
"Inspiration" and worse yet "inspirational" are annoying trigger words for me especially when used in the media. It always makes me feel that it is in some way belittling those of us who are not climbing Everest or running across Europe.
Many years ago, long before I had any inkling of myself as a person with a disability, I was doing some research into spinal cord injuries and I read and learned an enormous amount. In the course of these inquiries I came to meet two women with SCI's. One fit the complete definition of "Inspirational" she had quite a high level of injury and yet was an Olympic athlete. She juggled a high-powered career with public appearances and published writing. Yet when I spoke with her and interviewed her I found her comments a bit snarky, I might go so far as to say that she had tickets on herself and she made rather derogatory comments about the second woman I met. Comments to the effect of "If I had her level of injury I would be doing so much more than she is!" The second woman was gentle and kind. She was open about dealing with the breakup of her marriage, she worked in a capacity that enabled her to help others who were newly paralyzed. Her quiet determination to rebuild her life and her empathetic kindness touched me very deeply.
So who was inspiring?
NOT the achievement driven superstar, that's for sure!
Inspiration is a factor that is completely subjective. The media may well attempt to dictate to us who is and who is not inspirational but the fact of the matter is that nothing is inspirational unless it actually causes an effective change in the way of thinking or the actions of the person who is inspired... ergo one must be inspired to DO or to THINK something as a result of your contact with the source of inspiration.
I find that I am most inspired by those who quietly get on with their lives, who make the best of bad situations, who give what they have to give regardless of how much or how little it may be. These people are rarely found in two page spreads in magazines or in the "human interest" segments of "news" programs, some of them may never leave their bedrooms but they are reaching out and giving in the ways they can, with love and warmth and humour.
I am inspired by many of my blogging friends, their quiet determination, their humour in adversity - most especially those who continue to give to others and to agitate for our rights as disabled people and as humans while still battling with their own problems.
"Inspiration" - overworked, overused, inappropriately applied far too often, bandied about with abandon and yet... the underlying meaning is still so significant and important. I find the quiet dignity of ordinary people who are dealing gracefully with extraordinary difficulties to be my inspiration.
Thursday, 24 November 2011
Is you is, or is you ain't depressed?
Yesterday I had a bit of an argument with the psychologist I have been seeing,
She thinks that I'm depressed and I don't think that I am any more depressed than any intelligent person would be in my situation. There's a lot of stuff going on in my life at the moment that is cause for concern. Problems with housing, money, the government, oh and let's not forget the stress and uncertainty associated with my health. There would be something wrong with me if I were vivacious, bright, bubbly and effervescent all the time! Quite frankly, if you take your car to the mechanic and you tell him what is wrong with it, is he or she very likely to turn around and tell you you sound like you hate your car? Of course when I am at the psychologist I talk about the things that are bothering me! I have been depressed, I've been down in the blackest parts of my soul. Hell, I've hung out down there and had a good look around; stirred up the demons. I know what depression feels like and this isn't it!
Perhaps I should be aiming to give a more fair and balanced account of my state of mind? Maybe then people would stop asking me if I am thinking about hurting myself? (This was asked at least 5 times last week which I must confess was a rather low week for me.) More to the point I am concerned that if the medical professionals who are handling my case start to focus on the idea that I am depressed the next thing they will be saying is that the pain and fatigue (and all their nasty little friends) are all caused by depression and THAT is quite simply NOT the, case. This pain has followed me, to a greater or lesser extent, through all kinds of emotions, through great highs and horrible lows, through hopeful excitement and abject misery.
Sooooooooo in view of the fact that it has been Thanksgiving in the US, the first Thanksgiving I have missed in a dozen years I am going to talk about some of the things that I am hopeful and excited about.
She thinks that I'm depressed and I don't think that I am any more depressed than any intelligent person would be in my situation. There's a lot of stuff going on in my life at the moment that is cause for concern. Problems with housing, money, the government, oh and let's not forget the stress and uncertainty associated with my health. There would be something wrong with me if I were vivacious, bright, bubbly and effervescent all the time! Quite frankly, if you take your car to the mechanic and you tell him what is wrong with it, is he or she very likely to turn around and tell you you sound like you hate your car? Of course when I am at the psychologist I talk about the things that are bothering me! I have been depressed, I've been down in the blackest parts of my soul. Hell, I've hung out down there and had a good look around; stirred up the demons. I know what depression feels like and this isn't it!
Perhaps I should be aiming to give a more fair and balanced account of my state of mind? Maybe then people would stop asking me if I am thinking about hurting myself? (This was asked at least 5 times last week which I must confess was a rather low week for me.) More to the point I am concerned that if the medical professionals who are handling my case start to focus on the idea that I am depressed the next thing they will be saying is that the pain and fatigue (and all their nasty little friends) are all caused by depression and THAT is quite simply NOT the, case. This pain has followed me, to a greater or lesser extent, through all kinds of emotions, through great highs and horrible lows, through hopeful excitement and abject misery.
Sooooooooo in view of the fact that it has been Thanksgiving in the US, the first Thanksgiving I have missed in a dozen years I am going to talk about some of the things that I am hopeful and excited about.
- I'm eagerly anticipating going back to University next year. I see it as an opportunity to retrain into an area where I might be able to get high paying part-time work that I could participate in regardless of the effect of fibromyalgia (or whatever the hell this is). I also see University as an opportunity for me to shine and to increase my pretty low self-esteem. I have always done well in the past and I hope to do well again. Furthermore it is an opportunity to meet bright, interesting people and to expand my social circle.
- I have been spending time with The Boy who is now looking at staying in Sydney and perhaps not moving to the UK for a while. He makes me feel happy and proud and we are close and getting along well (complete with our usual bickering).
- I have rediscovered many of my old friends and I have been spending time with them and I have been feeling appreciated and cared for. The Best Friend is like a shining beacon of warmth and support and makes me laugh hysterically every time we meet!
- The Reader is angling to get me some copy writing work which would be something I could comfortably do while lying down (which I spend 80% of my life doing). This would help with my financial woes, and perhaps even my housing problems.
- Then, out of the blue, there is The New Connection with an old friend that seems to be blossoming into something tender and beautiful. There is even a tiny little voice inside me that is asking ...? well... I'll pause that thought for now. However she is coming to visit Sydney soon and I am very much looking forward to spending time with her when she is here.
- I have been seeing a really AWESOME group of doctors. Dr McLovely is caring. helpful, compassionate and kind and Professor McCool is uber cool and is leaving no stone unturned. While his investigations are hanging over me a bit at the moment I am definitely more hopeful than fearful.
- Today I had a telephone interview for a part-time job. The good news is that it will not be until next year which gives me some time to resolve all the issues that are holding me back at the moment. Hopefully by then I will also be feeling better and stronger and I'll be able to work this around my University studies.
Yesterday I had an MRI (ordered by McCool) so no more calling me brainless, ok? I do have a brain I have a picture to prove it! I will be seeing McCool on Monday afternoon and although I am frightened of some of the possibilities (and of him finding nothing) I am also excited and hopeful that there might be something that can be treated. Naturally this is hanging over me to some extent... but I am honestly more hopeful than trepiditious.
Anxiety, I will cop to, I do have issues with anxiety and stress is a huge trigger for me, but depression? Not at the moment!
Wednesday, 23 November 2011
Women Say Something
Tonight I attended an event.
Long ago, back before cell phones and personal computers, before MASH stopped running, before I even knew what the words meant, I referred to myself as a Marxist Feminist Lesbian - at the time I was none of the three.
Time passed and I totally embraced one of the labels, held firm to the principles of another, and modified the third. I grew to become a Socialist Feminist Lesbian. I was never a separatist (though I have dear friends who were) but I understood where they were coming from and I marched for women's rights and listened to good solid lesbian lefty folk singers.
Somewhere in the late1980's and 1990's the wheels seem to have fallen off the women's movement, even the separatists mostly came down out of the hills and "played the game" and worked for "the man". Of course I was swept along just like everyone else... Settled down, had a baby, stuck at a real job, bought a house... But it was never far beneath the surface. Even when I moved to the US in 99/2000, even in the US, where when you say the word "socialist" lots of people hear the word "Stalin", I kept saying it.
Dammit I am a SOCIALIST and I am a FEMINIST and I am still (although not practicing LOL) a LESBIAN!
Sooooooooo by way of Twitter and Facebook I accidentally head about this event so I spent the afternoon resting and I went!
Oh my goodness - when did lesbians and feminists get so young? Yikes!
There were two panels, the first focused mainly on inclusion and talked a lot about bullying in schools. The second looked at feminism and (this is my takeaway so forgive me if it is not what anyone else got from the discussion) it talked about the future of feminism and if the word feminism can be revived/reclaimed/revitalized. A couple of times the word humanism was brought up as a possible replacement. At one point during the first discussion one of the panelists mentioned that dropping the words "Gay and Lesbian" from the front of the words Mardi Gras for the giant celebration held in Sydney ever Feb/March was an example of us (the queer community) showing the world that we are more inclusive than "they" are. I wonder if the word "humanism" were to be applied would it be considered the same way? Or have we become so inclusive that we no longer have an identity? Personally I think that if the feminist movement was no longer identified as relating to women it would have no validity and no reason to exist. One of the panelists insisted that she would always refer to herself as a feminist and that failing to do so would be disrespectful to all the women who have fought for the "equality" we have today (such as it is) and I agree.
There was an older woman on the second panel (one of the few people I saw who was most likely older than me!!!) and she suggested that we are bogged down in viewing the world from an economic (ie male dominated/goal focused/financial) point of view and that we need to move back to a focus on society. She said there needed to be a collective movement towards societal change. At this point one of the other panelists mentioned the Occupy movement and no one really pointed out that Occupy is totally an economic focused movement, its very core is an opposition to corporate greed and a desire for a more equitable distribution of wealth.
This evolved into a discussion of how factional in fighting and issue arguments are disrupting the ability of women/feminists to organize. One of the other panelists, a very interesting woman who is the secretary of a major trade union made a very interesting point... She said that no one has more in fighting than the unions but that when Australia was under the conservative Prime Minister John Howard they managed to put aside their differences and unite against the common enemy.
This to me is the crux of the issue.... The common enemy, the overarching goal, the fundamental principles - they must be grave enough and significant enough to unite us and to compel us to act.
On the way home I was singing this song to myself in the car...
Folksingers like Judy Small, Alix Dobkin, Cris Williamson, Maggie Kirkpatrick, and other lesbian artists like Robyn Archer taught us our women's history and reinforced our social consciences. Who are the young women of today learning from? I mean I really like Beyonce (The Boy would kill me if I said anything else) and Irreplaceable (to the left to the left) is a very empowering song but it's hardly educational.
God help us if it's Katy Perry!
Long ago, back before cell phones and personal computers, before MASH stopped running, before I even knew what the words meant, I referred to myself as a Marxist Feminist Lesbian - at the time I was none of the three.
Time passed and I totally embraced one of the labels, held firm to the principles of another, and modified the third. I grew to become a Socialist Feminist Lesbian. I was never a separatist (though I have dear friends who were) but I understood where they were coming from and I marched for women's rights and listened to good solid lesbian lefty folk singers.
Somewhere in the late1980's and 1990's the wheels seem to have fallen off the women's movement, even the separatists mostly came down out of the hills and "played the game" and worked for "the man". Of course I was swept along just like everyone else... Settled down, had a baby, stuck at a real job, bought a house... But it was never far beneath the surface. Even when I moved to the US in 99/2000, even in the US, where when you say the word "socialist" lots of people hear the word "Stalin", I kept saying it.
Dammit I am a SOCIALIST and I am a FEMINIST and I am still (although not practicing LOL) a LESBIAN!
Sooooooooo by way of Twitter and Facebook I accidentally head about this event so I spent the afternoon resting and I went!
Oh my goodness - when did lesbians and feminists get so young? Yikes!
There were two panels, the first focused mainly on inclusion and talked a lot about bullying in schools. The second looked at feminism and (this is my takeaway so forgive me if it is not what anyone else got from the discussion) it talked about the future of feminism and if the word feminism can be revived/reclaimed/revitalized. A couple of times the word humanism was brought up as a possible replacement. At one point during the first discussion one of the panelists mentioned that dropping the words "Gay and Lesbian" from the front of the words Mardi Gras for the giant celebration held in Sydney ever Feb/March was an example of us (the queer community) showing the world that we are more inclusive than "they" are. I wonder if the word "humanism" were to be applied would it be considered the same way? Or have we become so inclusive that we no longer have an identity? Personally I think that if the feminist movement was no longer identified as relating to women it would have no validity and no reason to exist. One of the panelists insisted that she would always refer to herself as a feminist and that failing to do so would be disrespectful to all the women who have fought for the "equality" we have today (such as it is) and I agree.
There was an older woman on the second panel (one of the few people I saw who was most likely older than me!!!) and she suggested that we are bogged down in viewing the world from an economic (ie male dominated/goal focused/financial) point of view and that we need to move back to a focus on society. She said there needed to be a collective movement towards societal change. At this point one of the other panelists mentioned the Occupy movement and no one really pointed out that Occupy is totally an economic focused movement, its very core is an opposition to corporate greed and a desire for a more equitable distribution of wealth.
This evolved into a discussion of how factional in fighting and issue arguments are disrupting the ability of women/feminists to organize. One of the other panelists, a very interesting woman who is the secretary of a major trade union made a very interesting point... She said that no one has more in fighting than the unions but that when Australia was under the conservative Prime Minister John Howard they managed to put aside their differences and unite against the common enemy.
This to me is the crux of the issue.... The common enemy, the overarching goal, the fundamental principles - they must be grave enough and significant enough to unite us and to compel us to act.
On the way home I was singing this song to myself in the car...
Folksingers like Judy Small, Alix Dobkin, Cris Williamson, Maggie Kirkpatrick, and other lesbian artists like Robyn Archer taught us our women's history and reinforced our social consciences. Who are the young women of today learning from? I mean I really like Beyonce (The Boy would kill me if I said anything else) and Irreplaceable (to the left to the left) is a very empowering song but it's hardly educational.
God help us if it's Katy Perry!
Tuesday, 22 November 2011
Protecting me or protecting them?
I'm wondering if it is just part of the human condition or if perhaps it is part of the Australian cultural identity or if maybe it is just me...
I just saw a facebook friend suggestion to connect with my first cousin once removed (my cousin's son) and it made me immediately think that I would really like to touch base with my cousin who I will call Sugar Plum (not because it describes her in any way but simply because it was part of a rhyme that my mother used to say in reference to her). When I first came home to Australia she was one of the first people I wanted to connect with but then my Gay Brother told me she was going for a month long trip overseas so I let it go... Now I know she would be back but for some reason I am hesitating to reach out to her. She was one of my mother's "girls", one of a handful of people my mother loved above all others.
Sugar Plum is about 9 or 10 years older than me (she was the oldest surviving grandchild and I the youngest) so when we were kids, although our families spent quite a lot of time together, she and I were not really in the same generation and had only passing interactions. I thought she was brilliant and glamourous and I think she thought I was hyper and annoying. By the time I grew into adulthood she had a husband and three rambunctious boys and I was off trying new things and spreading my wings.
The 1990's saw a string of horrible losses in her family. First her younger brother died of cancer and then her father, my beloved uncle (after whom I named The Boy) died and then her mother, my irrepressible aunt, died as much of a broken heart as of the colon cancer she had fought for so many years. My mother was by then the closest thing to a parent she had and I was happy to share her. Sugar Plum was the only person other than myself and my two brothers who we told when mum was dying in 2008. She made the trek up the coast to see mum one last time and on my way back to the US that trip, after mum died, I spent a night in her house and an evening laughing and crying together. It might have been the first and only time we were alone as two adult women.
I love my cousin, there's no doubt of that, but I don't want to burden her with my problems. I think it is human nature to want to solve the problems of others... As a side note I think that's why so many people are always making suggestions and recommendations to those of us who have chronic illnesses. I am wondering if my reluctance to get in touch is about trying to protect her from wanting to help me or if it is about protecting myself in some way. Time passes and it gets harder and harder to make that initial contact.
Back when I first got really sick with FMS, or whatever the hell they decide this condition is, I retreated. At that time I was living in the US and the people I withdrew from were my friends. I didn't want to talk about it, I didn't want to be a giant misery guts whining about how shitty I felt. I felt, in many ways as I feel today; I feel like I have nothing positive to offer, nothing to bring to the table. My health isn't my only problem at the moment (as if it wasn't enough), I'm really broke cause I can't work and I am living on a small government benefit. I can't go on staying where I am staying for much longer, and though my wonderful friend with whom I am staying won't throw me to the wolves I know that I am overstaying my welcome and that stresses me out. So back to the default setting I go - I retreat.
When I get really down and out, when reaching out to others would help, I do the opposite and pull away. I'm really lucky that there are a few people who listen and understand and don't seem to consider me to be too much of a burden so I'm not in complete retreat. I'm seeing The Best Friend several times a week and that's wonderful, and I had lunch yesterday with The Reader and that was great.... There are others who are there for me in wonderful ways, thank goodness. But I am feeling very uncomfortable about calling my cousin, I don't know if I am up to starting from scratch to explain all this to someone else and yet she is my closest living female relative and I am hers. We share a huge pool of people we have loved and lost and we are in many ways the only remnants of my mother's family.
So, should I call Sugar Plum?
I just saw a facebook friend suggestion to connect with my first cousin once removed (my cousin's son) and it made me immediately think that I would really like to touch base with my cousin who I will call Sugar Plum (not because it describes her in any way but simply because it was part of a rhyme that my mother used to say in reference to her). When I first came home to Australia she was one of the first people I wanted to connect with but then my Gay Brother told me she was going for a month long trip overseas so I let it go... Now I know she would be back but for some reason I am hesitating to reach out to her. She was one of my mother's "girls", one of a handful of people my mother loved above all others.
Sugar Plum is about 9 or 10 years older than me (she was the oldest surviving grandchild and I the youngest) so when we were kids, although our families spent quite a lot of time together, she and I were not really in the same generation and had only passing interactions. I thought she was brilliant and glamourous and I think she thought I was hyper and annoying. By the time I grew into adulthood she had a husband and three rambunctious boys and I was off trying new things and spreading my wings.
The 1990's saw a string of horrible losses in her family. First her younger brother died of cancer and then her father, my beloved uncle (after whom I named The Boy) died and then her mother, my irrepressible aunt, died as much of a broken heart as of the colon cancer she had fought for so many years. My mother was by then the closest thing to a parent she had and I was happy to share her. Sugar Plum was the only person other than myself and my two brothers who we told when mum was dying in 2008. She made the trek up the coast to see mum one last time and on my way back to the US that trip, after mum died, I spent a night in her house and an evening laughing and crying together. It might have been the first and only time we were alone as two adult women.
I love my cousin, there's no doubt of that, but I don't want to burden her with my problems. I think it is human nature to want to solve the problems of others... As a side note I think that's why so many people are always making suggestions and recommendations to those of us who have chronic illnesses. I am wondering if my reluctance to get in touch is about trying to protect her from wanting to help me or if it is about protecting myself in some way. Time passes and it gets harder and harder to make that initial contact.
Back when I first got really sick with FMS, or whatever the hell they decide this condition is, I retreated. At that time I was living in the US and the people I withdrew from were my friends. I didn't want to talk about it, I didn't want to be a giant misery guts whining about how shitty I felt. I felt, in many ways as I feel today; I feel like I have nothing positive to offer, nothing to bring to the table. My health isn't my only problem at the moment (as if it wasn't enough), I'm really broke cause I can't work and I am living on a small government benefit. I can't go on staying where I am staying for much longer, and though my wonderful friend with whom I am staying won't throw me to the wolves I know that I am overstaying my welcome and that stresses me out. So back to the default setting I go - I retreat.
When I get really down and out, when reaching out to others would help, I do the opposite and pull away. I'm really lucky that there are a few people who listen and understand and don't seem to consider me to be too much of a burden so I'm not in complete retreat. I'm seeing The Best Friend several times a week and that's wonderful, and I had lunch yesterday with The Reader and that was great.... There are others who are there for me in wonderful ways, thank goodness. But I am feeling very uncomfortable about calling my cousin, I don't know if I am up to starting from scratch to explain all this to someone else and yet she is my closest living female relative and I am hers. We share a huge pool of people we have loved and lost and we are in many ways the only remnants of my mother's family.
So, should I call Sugar Plum?
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.
Saturday, 19 November 2011
A Mahrvelous Pahrty!
"Quite for no reason, I'm here for the season and high as a kite,
Living in error with Maude at Cap Ferat which couldn't be right
Everyone's here and frightfully gay, nobody cares what people say
Though the Riviera is really much queerer than Rome at its height
Yesterday night.... I went to a MAH-VEL-OUS party!" [Noel Coward]
It was tonight, it was not the Riviera, I don't think anyone was gay (except me) but it was a marvelous party!
This evening I attended a soiree at the home of The Actress and her husband The Percussionist. What a wonderful night. The Percussionist's band played - they are absolutely awesome and I am verging on being their groupie! One of the premier Australian female jazz singers of our time performed which was such a surprise and an honour. Fabulous people, excellent food and brilliant entertainment. I had a wonderful time!
I managed to catch up with The Scientist a bit, which was nice, and I had some fantastic conversations with a couple of other women I met there. The Boy was going to come but piked out on me fearing he would be the only person in his age group there... He was wrong there were lots of young people, in fact I think the guests ranged from about 2 to in their 70's.
I seem to be getting used to the new meds because my brain has kind of started to work again... I'm thinking about things again after a few days of feeling like the living dead. Today I spent most of the day in bed, still feeling groggy so I was well rested but I know I will pay tomorrow.
It was worth it!
Living in error with Maude at Cap Ferat which couldn't be right
Everyone's here and frightfully gay, nobody cares what people say
Though the Riviera is really much queerer than Rome at its height
Yesterday night.... I went to a MAH-VEL-OUS party!" [Noel Coward]
It was tonight, it was not the Riviera, I don't think anyone was gay (except me) but it was a marvelous party!
This evening I attended a soiree at the home of The Actress and her husband The Percussionist. What a wonderful night. The Percussionist's band played - they are absolutely awesome and I am verging on being their groupie! One of the premier Australian female jazz singers of our time performed which was such a surprise and an honour. Fabulous people, excellent food and brilliant entertainment. I had a wonderful time!
I managed to catch up with The Scientist a bit, which was nice, and I had some fantastic conversations with a couple of other women I met there. The Boy was going to come but piked out on me fearing he would be the only person in his age group there... He was wrong there were lots of young people, in fact I think the guests ranged from about 2 to in their 70's.
I seem to be getting used to the new meds because my brain has kind of started to work again... I'm thinking about things again after a few days of feeling like the living dead. Today I spent most of the day in bed, still feeling groggy so I was well rested but I know I will pay tomorrow.
It was worth it!
Thursday, 17 November 2011
Homeward bound, I wish I were...
The new med I'm taking has made me even more exhausted than usual and perhaps it is also making me depressed... It wouldn't be the first time an anti-depressant had a depressing effect on me. Wellbutrin made me cry all the time... I'm at the point (having taken it 3 times) where I am wondering if I should tell Professor McCool that it is having a negative impact. Being 3pm on a Friday afternoon I really need to make my mind up.
Today I received two almost identical emails both with the heading "Hello" both somewhat unexpected. One from my gay brother and the other from my step-sister. Both were inquiring if I am going to make it to Christmas. It must have been Check On Displaced Day. Hmmm. I mentioned this to both of them and my step-sister insists that it is pure coincidence.
Well, I just put in a quick call to McCool and after being routed to the wrong number 4 times I actually got his office where he personally answered the phone! He says to persevere and that the tiredness will pass in a week or so. He asked if I was suicidal. I've probably been asked that about 5 times this week. I'm not suicidal. I would never do that to my son. I couldn't leave him with that legacy. Although to be honest, other than him I sometimes wonder, 'what's the point?'
I do have a purpose though, at least for now... Shortly I am going to drag my sorry arse out of bed and go and pick up The Boy from the train station. Then I'm taking him back to The Best Friend's house and I'm going to hang out there for a while. She will make me laugh.
An interesting thing has been going on lately. I have reconnected with an old school friend (not one mentioned before) and we have been chatting online late in the evenings. I don't want to make too much of this but it seems for some reason, that is yet to be revealed, this connection is important to both of us. I actually think about our interaction during the day and even, dare I say it, look forward to our talks.
I wonder if there are people who are like the human equivalent of "comfort food"?
I pose this theory;-
We have a great deal in common (socio-economic background, very similar education, daughters of divorced houses, we have the same unusual name (girls called Displaced are pretty unusual), we are both lesbians, we are both single)
We shared a brief period of time when we were girls/young women (we sat next to each other in class, we belonged to the same school clubs)
We were both kind girls at a time when girls were often so horrible to each other.
We both hated the same teacher... and she hated us!
I wonder if we are comforting to each other in some way, like the smell of baking bread or apple pie might be if your granny had been a baker. My self esteem is so low at the moment I can't imagine that anyone would be interested in me in any way other than as a friend, I have so little to offer, so little to bring to the table...
So now I need to express my gratitude... The Boy, The Best Friend, The New Connection, The Reader, The Horsewoman, Dr McLovely, Professor McCool, you are all helping me get through this low period in my life and I am grateful for you all. I am also grateful for my online friends/readers/fellow bloggers - in particular my Fibro Sisters Jazz and Kathy and the coolest advocate of all Sarah... and never to be forgotten My Pseudo!
Today I received two almost identical emails both with the heading "Hello" both somewhat unexpected. One from my gay brother and the other from my step-sister. Both were inquiring if I am going to make it to Christmas. It must have been Check On Displaced Day. Hmmm. I mentioned this to both of them and my step-sister insists that it is pure coincidence.
Well, I just put in a quick call to McCool and after being routed to the wrong number 4 times I actually got his office where he personally answered the phone! He says to persevere and that the tiredness will pass in a week or so. He asked if I was suicidal. I've probably been asked that about 5 times this week. I'm not suicidal. I would never do that to my son. I couldn't leave him with that legacy. Although to be honest, other than him I sometimes wonder, 'what's the point?'
I do have a purpose though, at least for now... Shortly I am going to drag my sorry arse out of bed and go and pick up The Boy from the train station. Then I'm taking him back to The Best Friend's house and I'm going to hang out there for a while. She will make me laugh.
An interesting thing has been going on lately. I have reconnected with an old school friend (not one mentioned before) and we have been chatting online late in the evenings. I don't want to make too much of this but it seems for some reason, that is yet to be revealed, this connection is important to both of us. I actually think about our interaction during the day and even, dare I say it, look forward to our talks.
I wonder if there are people who are like the human equivalent of "comfort food"?
I pose this theory;-
We have a great deal in common (socio-economic background, very similar education, daughters of divorced houses, we have the same unusual name (girls called Displaced are pretty unusual), we are both lesbians, we are both single)
We shared a brief period of time when we were girls/young women (we sat next to each other in class, we belonged to the same school clubs)
We were both kind girls at a time when girls were often so horrible to each other.
We both hated the same teacher... and she hated us!
I wonder if we are comforting to each other in some way, like the smell of baking bread or apple pie might be if your granny had been a baker. My self esteem is so low at the moment I can't imagine that anyone would be interested in me in any way other than as a friend, I have so little to offer, so little to bring to the table...
So now I need to express my gratitude... The Boy, The Best Friend, The New Connection, The Reader, The Horsewoman, Dr McLovely, Professor McCool, you are all helping me get through this low period in my life and I am grateful for you all. I am also grateful for my online friends/readers/fellow bloggers - in particular my Fibro Sisters Jazz and Kathy and the coolest advocate of all Sarah... and never to be forgotten My Pseudo!
Tuesday, 15 November 2011
Trudging through treacle...
I am calling it treacle but I resent the fact that treacle is a substance of which I am rather fond...
It might be better called tar or mud which are both unpleasant but which don't quite capture just how hard it is to make my body move today.
Even typing is hard and keeping my eyes open is even harder...but I feel like I need to spit something out there.
I think where I used to have exhaustING days now I have exhaustED days... far too frequently. My body feels a bit like it used to feel after a 200 metre sprint, only there hasn't been a sprint. I tried to describe the feeling to Professor McCool the other day and missed this metaphor unfortunately... I wonder if it means something that my muscles feel like I am in an anaerobic state?
I'm off the juice diet, McCool said to stop and I'm glad I did cause I didn't have even a single day while I was on it when I felt strong or energetic. Mind you I feel crappy still so maybe it wasn't the diet's fault. My fingernails liked the diet they seem healthier.
So night after night I have been waking and not being able to go back to sleep, little snatches of sleep just can't sustain anyone. Last night I took one of the anti-depressants McCool prescribed and I slept all almost all night and was like a zombie all day... I hope they don't continue to knock me out that much. I hate taking meds.
I'm such a cheap drunk!
It might be better called tar or mud which are both unpleasant but which don't quite capture just how hard it is to make my body move today.
Even typing is hard and keeping my eyes open is even harder...but I feel like I need to spit something out there.
I think where I used to have exhaustING days now I have exhaustED days... far too frequently. My body feels a bit like it used to feel after a 200 metre sprint, only there hasn't been a sprint. I tried to describe the feeling to Professor McCool the other day and missed this metaphor unfortunately... I wonder if it means something that my muscles feel like I am in an anaerobic state?
I'm off the juice diet, McCool said to stop and I'm glad I did cause I didn't have even a single day while I was on it when I felt strong or energetic. Mind you I feel crappy still so maybe it wasn't the diet's fault. My fingernails liked the diet they seem healthier.
So night after night I have been waking and not being able to go back to sleep, little snatches of sleep just can't sustain anyone. Last night I took one of the anti-depressants McCool prescribed and I slept all almost all night and was like a zombie all day... I hope they don't continue to knock me out that much. I hate taking meds.
I'm such a cheap drunk!
Back in the day...
A long time ago when I was just a baby dyke there were no positive lesbian role models.
I'm talking about before even Martina Navratilova came out. Before k.d.lang, before Melissa Etheridge, before Rosie O'Donnell, before ELLEN! It was no surprise that Martina Navratilova was having a relationship with Rita Mae Brown because after all they were, after all, the ONLY two lesbians on Earth!
I just read this story, unfortunately I can't find the author's byline...
Dallas Voice story re death of Barbara Grier
The author makes the point more eloquently than I can, what a difference organizations like Naiad Press made to young lesbians around the world. Barbara Grier and her partners were instrumental in making lesbian literature accessible to all of us. It saddens me that such an institution faded away with the retirement of Ms Grier and her partner Donna McBride and yet it is really a credit to them that it did.
It seems that there is an aspect of planned obsolescence in a movement like the 'Lesbian Movement' or the 'Women's Movement' and even in things like the 'Civil Rights' movement. If such a movement succeeds in it's primary objective, which in it's simplest form is full acceptance/integration, then the movement which fought so hard and so long becomes redundant. It is paradoxical that success begets failure, if not failure certainly the reduction of purpose.
There was a time, in my lifetime, when a statement like "I kissed a girl and I liked it" would have landed you in at least therapy, perhaps aversion therapy and in the worst case maybe even in a mental hospital. Those of us who thirsted and hungered for lesbian role models were saved by organizations like Naiad Press and by pioneers like Barbara Grier.
To Ms Grier, and others like her, all lesbians of today owe a debt of gratitude.
I salute you.
I'm talking about before even Martina Navratilova came out. Before k.d.lang, before Melissa Etheridge, before Rosie O'Donnell, before ELLEN! It was no surprise that Martina Navratilova was having a relationship with Rita Mae Brown because after all they were, after all, the ONLY two lesbians on Earth!
I just read this story, unfortunately I can't find the author's byline...
Dallas Voice story re death of Barbara Grier
The author makes the point more eloquently than I can, what a difference organizations like Naiad Press made to young lesbians around the world. Barbara Grier and her partners were instrumental in making lesbian literature accessible to all of us. It saddens me that such an institution faded away with the retirement of Ms Grier and her partner Donna McBride and yet it is really a credit to them that it did.
It seems that there is an aspect of planned obsolescence in a movement like the 'Lesbian Movement' or the 'Women's Movement' and even in things like the 'Civil Rights' movement. If such a movement succeeds in it's primary objective, which in it's simplest form is full acceptance/integration, then the movement which fought so hard and so long becomes redundant. It is paradoxical that success begets failure, if not failure certainly the reduction of purpose.
There was a time, in my lifetime, when a statement like "I kissed a girl and I liked it" would have landed you in at least therapy, perhaps aversion therapy and in the worst case maybe even in a mental hospital. Those of us who thirsted and hungered for lesbian role models were saved by organizations like Naiad Press and by pioneers like Barbara Grier.
To Ms Grier, and others like her, all lesbians of today owe a debt of gratitude.
I salute you.
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)
Sunday, 13 November 2011
The Juice Diet Day 5
Ok here is the announcement... I am going to discontinue this diet after 7 days unless I start to feel substantially better. I feel like crap, I have felt like crap the whole time, and in addition to the normal crappy feeling I am having to do all this crappy stuff to make the juice (which is quite yummy usually once I get it done)
So here I am reporting on yesterday (Day 5) with only today and tomorrow to go.
I'm going to see the immunologist this afternoon - clearly I won't have to explain that today is a good day, though not quite the worst I ever feel it is a good example of a bad (not BAAAAD) day.
Quite frankly I'm over it!
So here I am reporting on yesterday (Day 5) with only today and tomorrow to go.
I'm going to see the immunologist this afternoon - clearly I won't have to explain that today is a good day, though not quite the worst I ever feel it is a good example of a bad (not BAAAAD) day.
Quite frankly I'm over it!
| Edna Everage Day | DAY 5 | |
| Constant Pain | Constant dull aches | Headache's gone! Body pain is unrelenting. |
| Pain Rating | 5 | 6 |
| Stabbing or Shooting Pain | Intermittent but many times a day – hips, knees, shoulders, back, neck – the usual suspects | My hips, knees and right shoulder featured prominently with a rather nasty cameo by my back. |
| Energy | Like I used to feel when I had a cold or the flu. | Still lousy |
| Skin | Irritation and itchiness usually when I try to relax | Not too bad (Yay!) |
| Plumbing | Varies | Fine |
| Forgetfulness | Intermittent | Average |
| Depression | A bit down | A bit down |
| Anxiety | Fluctuating at times high | Average (a couple of spikes) |
| Sleep | Restless, broken, some insomnia | Slept very heavily (woke hurting) for about 4 hours and then couldn't go back to sleep. |
| Restlessness | Limited ability to be still | Not too bad |
| Fumbling & Stumbling | Drop things, bump into things, catch feet on uneven surfaces & stumble | Quite bad, even watching my fingers I lost hold of something I was holding delicately. |
| Balance & Vertigo | Varied equilibrium issues with occasional vertigo | Poor balance a couple of mild head spins (needed to sit) |
| Hunger | Not usually | Too tired to bother eating it was a real drudge |
| Cheating | N/A | Nuts, olives and avocado and whole fruit instead of juiced. |
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?
The Juice Diet Day 4
I feel like shit which may or may not be the fault of the bloody juice diet... I am not really succeeding with it completely, having fallen off the juicer two days in a row (due to loving friends wonderful home cooking!!!)
On Day 4 I felt so shitty I just didn't have the energy to cut it all up, build the juicer, shove it all in there, clean the juicer and then drink the sludgy concoction that was by then starting to separate. I grabbed an apple and made do with that until in the late afternoon when I drove around the corner to see The Best Friend. She is becoming legendary in this blog and in my mind. This time she looked at me and said "sit down" (pulling out a chair at the table) then placed in front of me a steaming bowl of goulash and said "eat". Then she proceeded to make me laugh so hard I was out of breath! I was seriously having one of those 'I can hardly move' days and that half an hour of nurturing was like a lifetime in heaven. I forced myself to juice fruit in the evening and overdid the oranges for which I was rewarded with an attack of hives. *sigh*... I am wondering why I am bothering, though my pants are getting looser.
BTW The Best Friend doesn't want to be mentioned in my blog but I can't stop myself singing her praises and being so thankful that I have her.
On Day 4 I felt so shitty I just didn't have the energy to cut it all up, build the juicer, shove it all in there, clean the juicer and then drink the sludgy concoction that was by then starting to separate. I grabbed an apple and made do with that until in the late afternoon when I drove around the corner to see The Best Friend. She is becoming legendary in this blog and in my mind. This time she looked at me and said "sit down" (pulling out a chair at the table) then placed in front of me a steaming bowl of goulash and said "eat". Then she proceeded to make me laugh so hard I was out of breath! I was seriously having one of those 'I can hardly move' days and that half an hour of nurturing was like a lifetime in heaven. I forced myself to juice fruit in the evening and overdid the oranges for which I was rewarded with an attack of hives. *sigh*... I am wondering why I am bothering, though my pants are getting looser.
BTW The Best Friend doesn't want to be mentioned in my blog but I can't stop myself singing her praises and being so thankful that I have her.
| Edna Everage Day | DAY 4 | |
| Constant Pain | Constant dull aches | Very high level of constant pain and milder headache – got a bit better in the evening. |
| Pain Rating | 5 | 7 then 6 |
| Stabbing or Shooting Pain | Intermittent but many times a day – hips, knees, shoulders, back, neck – the usual suspects | Both my knees were plaguing me as well as a persistent cramp/spasm in my right calf. |
| Energy | Like I used to feel when I had a cold or the flu. | Dragging |
| Skin | Irritation and itchiness usually when I try to relax | Too much citrus has kicked my allergies into high gear and my skin was itchy all over |
| Plumbing | Varies | Fine |
| Forgetfulness | Intermittent | Better than average |
| Depression | A bit down | Fine |
| Anxiety | Fluctuating at times high | Average |
| Sleep | Restless, broken, some insomnia | Woke a few times but slept pretty well (with the assistance of meds) |
| Restlessness | Limited ability to be still | Too much pain for restlessness |
| Fumbling & Stumbling | Drop things, bump into things, catch feet on uneven surfaces & stumble | Average |
| Balance & Vertigo | Varied equilibrium issues with occasional vertigo | Poor balance when walking wobbling around like a drunk. |
| Hunger | Not usually | I felt too tired to do all the things I needed to eat. |
| Cheating | N/A | Had whole fruit instead of juicing it (see above). The Best Friend fed me some nice home made Goulash so I guess I have failed again... oops |
Friday, 11 November 2011
How are you? Fine, if you don't ask for details.
I've been practicing, in my head at least, a selection of different answers to the interminable question...
"How are you?" (and all it's relatives "How are you doing?" "How are you going?" etc)
My mother, who lived to the ripe age of 90 (nearly 91), always said "Fine, if you don't ask for details." This quote is attributed to Katherine Hepburn in a 60 Minutes interview in 1979 but to be honest I reckon Mum was saying it before then... still... It's a good, slightly humourous response, that acknowledges there are problems and rescues the inquirer from having to pursue this topic any further. There's only one problem - you can't say it day after day to the same person. It is kind of a like a condom, it's only good for one protection! (What would I know about condoms? The last time I fooled around with a bloke "Safe Sex" hadn't even been invented!) Ok, back on task...
I hate lying. It has a physiological effect on me. It significantly raises my anxiety level, which causes me to become tense, which causes muscle spasms, which increases PAIN, which is the whole reason why "Fine" is a LIE!!! Now, I don't feel this way with strangers, shop attendants, receptionists etc, I clearly know that these strangers are just saying what people say when they greet someone... they don't give a brown rat's arse how I am feeling and I don't give a Friar Tuck what they think of me. All's good on that front.
Friends are different.
Some of my friends are REALLY asking, they ACTUALLY want a truthful answer - I'll answer with some kind of assessment relative to how my day is for me. Like last night The Actress asked and I said, "It's been a pretty bad day but I'm feeling a little better now." That was a truthful response and I was comfortable enough, and felt cared about enough, to be honest. It didn't have to lead into a long discussion.
But what of my friends who are not really asking, the ones who say it as a matter of standard form? I have tried "Same old same old" but in some ways that is a lie because with a condition like Fibromyalgia there is no "same old" it is constantly fluctuating, constantly moving, constantly finding new and unusual ways to make me feel like a steaming mess of excretia!
I don't want to be someone who is perpetually mired in my chronic problems so I need a truthful, guilt free way to brush off these superficial inquiries. Sometimes the inquirer doesn't want an answer and sometimes I just don't feel like talking about it or thinking about it. Sometimes I just don't want to whine or whinge or to be perceived as a whinger (which is despised in Australia where we are raised to be perfect specimens with the silent suffering stoicism embodied by our diggers and bushman).
I've been trying on answers like, "Shitty, but let's not go there", or the existential response, "It is what it is", and on those very rare good days, "Better than usual." Sometimes I just avoid answering and bluster on to talk of them. But too often I find myself lapsing into just saying, "Fine" or "Not too bad." and to be quite frank they are lies. Even on my best of days I'm not fine. I find the insincerity of these inquiries and, more to the point, the insincerity of my responses quite disturbing, they start the anxiety cycle.
Maybe I should go over the top in the other direction... Perhaps something like "Great, it's only a car running over me not a bus!" or "Better than a dead roo on the side of the road!" or "Terrific, I just did 13 rounds with Mike Tyson and I still have two ears!" or "The third level of hell is much damper than the second." After all it's all in the delivery. Maybe I could write a song to the tune of "I've Been Everywhere"...
I hurt everywhere, man
I hurt everywhere,
I know it isn't fair, man
My knees hurt as a pair, man
Of pain I have my share, man
But I hurt everywhere. (Need I go on? You get the drift.)
On second thoughts I don't think that would go over very well to the huge crowds of one that I play to.
I struggle with this, it probably doesn't sound like much of a moral dilemma but it is to me. I'm an overly sincere, very serious, frequently humourless person!
Dear Abby,
I don't want to lie to my friends when they ask how I am but I don't want to tell them the truth either... Please help.
[Signed] Aching in Sydney
The Juice Diet Day 3
The weekend is here and Day 3 was Friday. I have to confess that I have broken the diet on the evening of Day 3 cause I REALLY wanted to go and have dinner with my friend, The Actress, and her beautiful daughters. Then I REALLY wanted to go out to the pub to see her hubby The Percussionist play in his band.
Never being very well versed in the subtleties of self flagellation and deprivation I did what I REALLY wanted to do! I was not too bad though. I watched The Actress make the green chicken curry - all good fresh ingredients, drank water with dinner, and only had two little beers at the pub. (OK one big beer and one little beer).
Here it is for your reading pleasure... Day 3.
Never being very well versed in the subtleties of self flagellation and deprivation I did what I REALLY wanted to do! I was not too bad though. I watched The Actress make the green chicken curry - all good fresh ingredients, drank water with dinner, and only had two little beers at the pub. (OK one big beer and one little beer).
Here it is for your reading pleasure... Day 3.
| Edna Everage Day | DAY 3 | |
| Constant Pain | Constant dull aches | Quite high level of constant pain and continuing headache – got a bit better in the evening. |
| Pain Rating | 5 | 6 then 5 |
| Stabbing or Shooting Pain | Intermittent but many times a day – hips, knees, shoulders, back, neck – the usual suspects | Left knee feels like it has fallen apart with my lower leg coming off from the top. Other more intense pain in the usual places too. |
| Energy | Like I used to feel when I had a cold or the flu. | Terrible... About as much bounce as a ball made of clay. Noticeably better in the evening. |
| Skin | Irritation and itchiness usually when I try to relax | The weird invisible things are walking on my skin today |
| Plumbing | Varies | Fine |
| Forgetfulness | Intermittent | Average |
| Depression | A bit down | Miserable Day/ Happier in the evening |
| Anxiety | Fluctuating at times high | Quite high for a while then less evident. |
| Sleep | Restless, broken, some insomnia | Woke many times but managed to go back to sleep relatively quickly. Probably about 6 hours broken. |
| Restlessness | Limited ability to be still | More tired than restless so getting sore before forcing the movement. |
| Fumbling & Stumbling | Drop things, bump into things, catch feet on uneven surfaces & stumble | Average, had a bit of trouble not catching my feet on raised surfaces. |
| Balance & Vertigo | Varied equilibrium issues with occasional vertigo | Average |
| Hunger | Not usually | I'm hungry and getting sick of this business. My body wants carbs and protein. |
| Cheating | N/A | OK Sue me – I went to my friend's (The Actress) house and had a Thai Chicken Curry – all home made bloody delicious and all fresh. |
Thursday, 10 November 2011
The Juice Fast Day 2
Well it was a busy day starting with the 8.30 appt with the endocrinologist (who says this diet is ok)
I had a terrible headache again for most of the day and as days go it was a bit worse than usual (unless the usual standard needs to readjusted downwards...again...)
I had a terrible headache again for most of the day and as days go it was a bit worse than usual (unless the usual standard needs to readjusted downwards...again...)
| Edna Everage Day | DAY 2 | |
| Constant Pain | Constant dull aches | Quite high level of constant pain and continuing headache |
| Pain Rating | 5 | 6 |
| Stabbing or Shooting Pain | Intermittent but many times a day – hips, knees, shoulders, back, neck – the usual suspects | Average (Regular intense pain but not constant) |
| Energy | Like I used to feel when I had a cold or the flu. | Worse than average – moving slowly – very tired/fatigued |
| Skin | Irritation and itchiness usually when I try to relax | Some strange sensations that creeping feeling – prolonged itching and burning of feet after taking off socks |
| Plumbing | Varies | Fine |
| Forgetfulness | Intermittent | Average |
| Depression | A bit down | Flat and thinking about acceptance |
| Anxiety | Fluctuating at times high | Less anxiety than average |
| Sleep | Restless, broken, some insomnia | Two blocks of a couple of hours each broken by a few hours restless in the night. |
| Restlessness | Limited ability to be still | Slightly less restless than average – but I was busy so was distracted too |
| Fumbling & Stumbling | Drop things, bump into things, catch feet on uneven surfaces & stumble | Dropped several things, my gait was rolling and a bit like I was drunk (which unfortunately I was not) |
| Balance & Vertigo | Varied equilibrium issues with occasional vertigo | Staggering but not tripping and no head spin |
| Hunger | Not usually | Kind of missed lunch so very hungry by late afternoon |
| Cheating | N/A | Had some humus and some olives with celery and some more avocado. |
Sorry this is quite utilitarian as I feel kind of crappy today and I used my energy writing the 11/11/11 blog.
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