2005-08-30

my 'pvfs-adjusted' world...

I haven't updated in days.

The bug has gone - thank goodness. You know when you get a bug that is so horrid that it will always stick out in your mind? Well that was one. And it was holding on for dear-life - just wouldn't shift!

But now, health-wise at least, I'm back to normal (well Post Viral Fatigue Syndrome 'normal' - you know what I mean). I've just been feeling really down recently - you know when you feel teary all the time and don't quite know why? Could be a whole plethora of reasons why I guess.

I miss having a laugh with my friends.

You know what struck me today? That I couldn't brush my teeth all in one go. How pathetic is that? I couldn't hold my arm up for the entire time all in one go.

Hmmm.

PVFS is a funny thing and I can understand why people don't understand why you might be ok one minute and not the next. For instance, why am I ok to sit at this computer and type? Yet I cannot keep my arm up to brush my teeth for too long?

It's because I have very limited strength. And while I operate in my 'PVFS adjusted world' I do seem normal.

I do have a general 'ick' (horrid) feeling that PVFS does give you anyway. That's pretty consistent but fluctuates in severity hour by hour. But if I have to do something 'outside my limitations', it's then I feel it most. It's then that you might see a glimpse of it too.

For example, when I went to see my family in France, I saw a relative of mine a good two or three times. I would be sitting down most of the time. Sometimes I might trapse into the kitchen to get a drink. All within my boundaries. With my makeup on, my hair presentable, and clothes on (yes I managed to get dressed most days), I did look.... well, normal.

It's funny. When I go over, and the various relatives come round (I can't go round their houses as I'm not well enough). I will always catch them looking at me deep in thought. And I can almost read their minds. They are thinking, 'But she doesn't look ill...'

In fact, when I then pick up on their puzzled expression and explain to them how this illness works (how many times have I done that - try explaining it in a different language to boot - rather tiring). Anyway where was I?

Oh yes, when I then pick up on their puzzled expression and explain to them how this illness works, you'll see their expression and see them nodding while I say, 'You're probably wondering what's wrong with me because I don't look ill.'

But I'm in my 'PVFS safe environment' there. Everything is minimised. Stress, physical actions - everything is measured. And in that environment (and if I'm actually up), I can operate and probably look relatively normal (apart from looking extremely pale).

Take me out of that 'PVFS safe environment' and the cracks begin to show. Sometimes while I'm outside that 'PVFS safe environment'- sometimes hours later, and most definitely 3 days later (when the delayed onset of my symptoms really come on strong).

It might be that taking me out of my physical environment, to a busier place - the busy road outside for instance, is enough to make me feel faint and dizzy. Sensory overload plays a major factor and us PVFS/ME/CFS suffers become very good at minimising auditory and visual stimuli in our 'PVFS/ME/CFS-safe' environments. For example, I have only recently started being able to watch television again. A while ago, watching television for more than a few minutes was just too much for me.

Or it might be taking me outside of my physical limitations - like doing the washing up, for example. Or hoovering - just too much for my body to handle.

So as I was saying, this relative of mine had seen me a few times in my 'PVFS safe environment'and so, although I'd explained how badly this illness affected me, you'd have to see it to understand. I was up when she saw me. Dressed most times, with makeup on. I could speak to her.

But she then took us to the station and I have to say, was shocked at how 'ill' I became when I left that 'PVFS safe environment'.

Although I had a walking stick, I had to walk a fair amount (for me) from one end of the train station to the other. Even walking at snail's pace, this had wiped me out already. A wheelchair would have been good at that point.

We then had to wait for about 10 to 15 minutes until we were ready to 'check in'. So I had to stand - which I could only manage (even with a stick) for about a minute.

I was going to sit on the floor (I didn't care!), but I ended up sitting on my suitcase while someone propped me up.

That, with the noise and visual stimuli started invading my whole being. Although they put me in a wheelchair when I finally got to the ticket booth, I felt like a battery that had been totally drained of all energy. I had developed a headache that was extremely painful. Everything was blurry. I was finding it hard to understand what people were saying. I was sitting down at this point, in the wheelchair.

And when we got back home and phoned my relatives to say thank you, that relative said she had been shocked and really didn't realise how bad I was.

That's just it isn't it.

It's an invisible illness that we learn to manage. We carefully harvest our energy and spend it frugally so we have enough in our day/night/the few hours we are up.

I've been better. In the past, I've had a much milder form of Post Viral Fatigue Syndrome (ME/CFS) - but still enough to be extremely disabling. And getting recognition from others was impossible. At those times, I was well enough to walk, yes. But I'd suddenly feel totally dreadful - almost like my brain and body would shut down. And/or I would most definitely suffer for it 3 days later when my symptoms flared up. But people wouldn't see that. They saw someone who 'looked normal'.

It's a hard illness to understand. And I can quite understand why some people are cynical if they don't understand how this illness works.

So that's my aim - with sleepydust. To help people understand what it's like. To get rid of these myths and minsconceptions. We sufferers need support. And that support won't be forthcoming if people don't understand what it is that we are really going through.

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