Fatigue and frustration go hand in hand

I need a cup of tea. Now. I was lying in bed in hospital. Day two of my three day cortisone treatment. I used to have them in the hope that the high dose of intra-venous Solumedurol would dampen the inflamation of an ms flare-up. The nurse poured me a cup. I drank it. Fast. Tea was the only thing that would douse the flash of anger that hit me on days two and three of the cortisone. After the euphoria came the anger. Invariably.

I don't use cortisone now. It has no positive effect. But still the anger comes. I call it MS rage. It doesn't happen often. Sometimes I feel as if I'll implode. I can't think clearly - I'm exhausted to the point of tears. Equanimity is gone. Don't come near me, I want to scream. What brings it on? The physical exhaustion? The niggling feeling of disappointment that never leaves me? The mind-numbing fatigue that makes me like a fractious three year old? A confluence of factors - practical, emotional and added to that the psychological effects of changes brought on by the disease activity itself.

So what do I do?

I give myself time to do the simple things. And I plan. Before I have a shower I work through the routine that is most labour saving. I make sure that I follow the same regimen and schedule a rest straight after. That helps to minimise the frustration. I go for the easiest route - clothes that are easiest to put on, a hairstyle that looks good but with minimal fuss, I eat from a bowl, I use an electric toothbrush, I dictate into my computer, I made adjustments to the shower so I can get in and out with greater ease. I walk with a walker when I can and use a scooter when I can't. That eases physical frustration. But psychological? That's another story.

Denial again. But I'm not depressed. No, no, that's not it. I'm strong. I'll cope. What is it about psychological distress that seems so shameful? Personality and the mind are enmeshed. Depression does not hit everyone with MS, but if it does medication can make life inordinately easier. Lighter.

I am only beginning to understand that the more I give in to the urge to yell or get angry the worse I feel. It is tiring beyond measure. When I get frustrated I force myself to stop. And give myself a choice. I can react with anger but then again I don't have to. I can go down the road of self-criticism but then again I don't have to. And there is always a cup of tea.

Tuesday, 11 November 2008

I read back what I wrote eight years ago and I nod my head in agreement. That is how it was. But now? My life has got more difficult. I can no longer dress myself, walk into the shower, walk at all. My fatigue is in me. I wake up tired (how I dislike that word "tired". Do you call a wilted flower "tired"?) and am so thankful that I have a nurse who opens the window, pulls off my duvet, gives me my wakker pill and helps me on to my commode on wheels. If it is a Monday, Wednesday or Friday I go to the toilet till my tummy works and then she pushes me into the shower. We adapted the shower to make it a roll in shower. And after the shower she helps me get dressed. Routine. The same basic routine. I ceased being embarrassed long ago.

Gratitude. A word that has to cover so much. Transferring from my electric scooter or my wheelchair to the car has become very difficult. My mother has learnt that trick of helping me to stand up and then swivel around to sit on the front seat of the car. But getting out of the car necessitates two if not three people. I am constantly amazed at the willingness of perfect strangers, to help lift me into the front seat. Gratitude. We now have a car that I am able to be wheeled into. Specially adapted. I am wheeled into the back of the car, am harnessed in, the chair is secured and away we go. Indescribably easier for my mother and I.

I call my scooter either Stealth 3 or the Eagle. And the car? Now, he's the Lark. We go out, just for a lark. Fun is always possible, right? Right