Why doesn't "Acceptance" mean getting presents?

I've been going through some barriers lately... Delusion busting I guess....

I hope I'm not the only one who has successfully perpetrated a fraud against myself.

When I moved home to Australia in the beginning of September I was under some strange illusion that I would be fine when I got here.  Without a magician in sight I had managed to convince myself that a reduction in stress and the sights and smells of my homeland would make everything better (well at least everything manageable).  Maybe it was the high of surviving the packing and moving, I don't know, but for about a week I did feel pretty good.  In pain, slow, tired but not too bad - perhaps I was just very distracted with excitement and with seeing all the changes that have taken place in my absence.  I don't know.  Then I overdid it and crashed - and crashed I have stayed.

For a person with a poor tolerance for stupidity I was really stupid.  I KNOW that this happens, I KNOW that the windows of time when I can feign normal are further apart and shorter all the time, I KNOW that I have been getting steadily worse for several years.  Of course none of that was front of mind when I was spinning my web of self delusion!

My self image is undergoing a redesign and the new decor is not very attractive, brown, grey and gloomy have never been my colours!  (Yes I know gloomy is not a colour - but it should be).  I've been thinking about acceptance.

I remember the first time I used a motorized chair.  It was when I was living in the US and on one very pain filled day I just couldn't face the endless aisles of Walmart.  What a relief it was to use the scooter.  I know people stared at me with my robust appearance of strength and good health, but for once I did not waste my precious energy trying to persuade my friend that we needed to leave!  For once I wasn't desperately looking for somewhere to sit down and eyeing off the changing rooms to see if they were clean enough to take a moment horizontally.  I also remember the intensity of the emotions that surround the renegotiation of self image that using an aid arouses.  In fact I have been dealing with this again lately as I find I need to use a walking stick pretty much any time I am walking anywhere.  I think there is a possibility that I am deluding myself about this too cause I tell myself it is mostly about balance, and yes my balance is appalling, but I think I am also giving my legs a bit of a break and letting my arm and shoulders take some of the strain.  I know people look at me differently when I am using the cane, they move differently around me.  It is a visible sign of the ravages of my invisible condition.  But there are gains too, it kind of explains my pitiful slowness and my twisted grimaces; it gives me permission to let the pain and fatigue show, and that is a relief.  Hiding, faking, pushing, straining and acting are bloody tiring.  Yes "FAKING the thing so many people say fibro diagnosed people are doing... Well naysayers, you are right, we are faking... we are faking that we are ok when we are NOT, we are faking that we are like everyone else when we are NOT!  Faking being normal not faking FMS.

Tomorrow I am seeing Dr McLovely again.  My test results and xrays will be back.  I need to write myself a list of things I want to mention to her cause I can't trust myself to remember them.  I've been having some trouble with my vision but I think I will leave that for another time if it doesn't resolve, it's really only in the mornings anyway, maybe like morning stiffness for my eyes where they seem to take a while to wake up and pull focus correctly.

Anyway time to sleep - I had a big day today - I changed the sheets!

I am my mind

I'm scared shitless.

The things going on with my body are (at times) inconvenient, unpleasant, depressing, annoying and disabling... they are not terrifying though.  I am not my ability to move fast or my ability to contort into pretzel -like positions, I'm not my ability to sit still or to walk long distances, I'm not my balance or my tactile sensitivity (well maybe I am that a bit) or the strength of my grip, I'm not my energy level (though I do mourn that one).  Experiencing significant degeneration in these areas doesn't alter the core of 'me' it just makes everything harder.

For the past two years I have abjectly refused to even consider that I might have any kind of cognitive problems caused by Fibromyalgia.  There is a symptom colloquially known as "Fibro Fog" which is present for many FMS diagnosed people.  It manifests as forgetfulness, aphasia (the inability to remember words or communicate effectively), and a general inability to recall the things you are trying to recall.  I have often made the point that experiencing constant pain creates a level of distraction that increases forgetfulness, as does stress, and I have blamed any deficit in myself on these factors.

Last night I could not remember a song that I have known all my life...  I don't mean I couldn't remember the lyrics - I couldn't remember it at all, I had an aching annoying sensation of having it be on the tip of my tongue but out of reach.  I remembered where and when I had sung it on stage.  I knew when it was played at sporting events.  I knew it was stirring.  I knew everyone knows it... everyone but me.  This morning I attempted to remember it again and came up with another similar song... for a little while I thought I had solved the mystery but it didn't exactly feel right.  As the feeling of "not rightness" grew I googled surrounding subjects and found it listed in Wikipedia.  Land of Hope and Glory... not Rule Britiannia (this morning's effort) nor God Save The Queen which was all I could think of last night.  I know everyone has things like this happen to them sometimes, the more stress the worse my recall has been for the last 10 years, but I am beginning to think that this is happening more often than it should.  I walk to the kitchen to get the phone and a plastic bag and return with a plastic bag and the vague feeling of failure.  I write these blogs and reach a point where i am searching for a word and it doesn't want to come... the other day I could not remember the word "ancillary" for some reason my mind kept suggesting "incendiary" and I KNEW that was wrong.  Roget was needed to save me from that one.  Yesterday I kept thinking the gallows were called a galley... When in my adult life have I ever done this????  Anyone who knows me knows that I ALWAYS have the right word on the tip of my tongue.  I'm a walking thesaurus for Pete's sake!

I'm frightened that other aspects of my intelligence might be affected too (though I have not noticed my processing slowing down I think) - what if I don't have the gifts that earned me a slew of High Distinctions last time I was a student?

But I am just totally frightened, scared shitless and witless because I am not my body but I AM my vocabulary.  I AM my quick incisive wit.  I AM my mind!