12 September, 2012

A skilled and experienced sufferer of symptoms

 A recent photograph of Fibrofog
Since the current weather is  unkind towards me all I seem  to be doing  is eating and sleeping. 

I do seize upon the opportunities to do other stuff -- I do get 'windows' -- but my current existence is brutal indeed.

The prevailing weather patterns  may be stable but they seem to be locked into let's-bully-Dave mode.

It is so dry that my lawn is almost dead and to walk on  the paths between my garden beds it's all noisy crunch crunch. Crisp under foot. 

Bushfire weather. 

Which component of this meteorological mix is the one that harms me so,  I don't know. Weather changes may bring on acute attacks of Fibromyalgia symptoms in me but I suspect that like some irritable organism, a flurry of attacks can switch me to chronic mode and my whole system goes bad -- to over load.

It then takes ages to climb back out of the abyss again. 

The good thing is that as a skilled and experienced sufferer of symptoms I can still manage to do stuff  and never fall into a crippling heap.

That's something to be proud of.

I challenge my body when I can by exercising -- so that 'schedule' ( such as it is) is very important to me. It does indeed pay to have a few obsessions. 

For instance, I can hardly walk today but I danced and despite the fact I spent so much of it  flat on my back I managed to do 'things' that I value in order to register  the day as worthwhile.
  • I read.
  • Cooked an evening meal
  • Watered the garden
  • Did stuff on the computer
  • Danced my dance 
I'd be lost without the computer and the web. Lost. It anchors my thought processes when just like today my concentration is missing in action. Typing out my thoughts -- sharing them and designing or editing  stuff for online publishing --  is all about me.

Even now I'm having a conversation with myself. 

I need  the challenge of composing stuff -- whatever it may be -- for an imagined audience starting with myself. Attempting to communicate something -- anything -- projects me out of the pathology I may be currently stuck with.

It's a very basic human need. 

And very effective. I recommend it. 

Ask yourself

 When you seek better  structure and form in order to explain yourself  with greater clarity  the process of composition  disciplines your own thoughts and facilitates deciding. 

You get to ask yourself: what am I thinking? Unless you try to answer that you won't really know.  From psychotherapy, to diary keeping, to  writing literature or exploring some other medium,  what you think is all about packaging the inside stuff for outside consumption -- even if the audience is just yourself. 

I even walk around with a note book so that I can make lists because making lists -- the business of jotting down items -- helps me to remember and organise what I need/intend to do-- where I'm at. Even if I don't later review the list I'm ahead because I gave my thinking a tangible form outside my head.

I separated thoughts by selecting which ones to jot down. I itemized my thinking.

This is the experience of 27 years of Fibromyalgia speaking. 

You can take my word for it: Fibro Fog is a nasty murk indeed. There have been occasions when I haven't been able to operate an ATM. I'd never be able to drive a car even if I wanted to. I'd be too dangerous on the road. I couldn't trust myself.

So in a sense you really have to work hard on generating a  boutique culture.  You may be able to get by with the same ole same ole but my everyday existence is peppered with these cognitive traps.

And to look at me you'd never guess.

Proper names and numbers -- forget about them. They are more often than not in my too hard basket. People's names. Names of townships. Telephone numbers... I cannot attach them to my memory despite my best efforts.
All too frequent example:  Imagine a new social setting and I get introduced to any number of persons. Maybe I'm to speak to them or teach them something (as happens). But there's hardly a chance I'll remember any of their names. The sounds just don't register. In fact, I immediately start panicking. They expect me to know their names and I won't! So I'm thinking  that before I run a session I gotta get those people to wear stick on name tags as there is no way I can get people to relate to and accept my cognitive impairment. My defensive habit is to not use personal/Christian names for fear that either I  won't know their names or in taking a punt and saying a name I make a mistake. The annoying problem is that I haven't worked out why I remember the names I do. Indeed, if we are introduced and I remember your name consider yourself blessed by cognitive forces unknown.
Obviously I am incapable of learning anything by rote. It doesn't work.

Numbers are a lost cause. The only phone number I know is my own. My ATM pin isn't really a number so much as a spatial layout on a key pad. I don't think I could easily articulate  it as a succession of four numbers.  But online passwords -- because I 'write/type' them down -- no probs. The visual layout of the keyboard guides my recall and confirms the embedding in my brain.

I try to register names by associating them with something else. It's like the way  mnemonics are used and I guess I'm still yearning for a ready system I can use any and every day to handle the proper noun challenge.
Example: I could never recall to memory the name of the Queensland town, "Nambour". It drove me crazy. I'd get to the point of the conversation where I wanted to speak the word "Nambour" and there was nothing there. No name. Blank. I'd have to say, "you know, the town that's on the Pacific Highway half way to the Sunshine Coast."  My solution, crude as it is, was to associate "Nambour" with "Vietnam" because the "Nam" got me half way through the word. It works. But I cannot retool every proper noun I stumble over like that.
Perhaps you are wondering how a condition that is a sort of Arthritis with all these stiffness, fatigue and pain symptoms be also so constraining cognitively.

Go figure.

But the research  doesn't give the sufferers from foggy break down much hope:
Research has shown that sufferers (of Fibro Fog) annually lose more than three times as much "gray matter" brain tissue than healthy, age-matched controls. And some of that loss occurs in areas of the brain that are involved in memory and concentration, says Patrick Wood, MD, a senior medical adviser to the NFA and one of the coauthors of the 2007 study.(link)

So it may get worse? What a bummer.

Believe me: pain and stiffness is easy. Thinking in a fog is hard. Real hard.
Afterward: I leant soon enough that after I 'got' Fibromyalgia  I could no longer learn a musical score. I used to play banjo  but under Fibro Fog rules none of the old tunes or any new ones were possible to play. After 4 or 5 bars the music in my head ran out. However (and this is  a wonderful thing) I discovered only over the last 12 months that I can learn and remember choreography. So dancing is so very important to me, you see. Lesson: what you lose on the swings...you gain on the slides.