One of the reasons that ME is often misunderstood, is that there are many levels and phases of the illness. As some of you know, there were years when I was bedbound in constant pain, barely able to move, speak, read, watch TV or do any of the things that make life bearable. Daily I am grateful that I am no longer suffering this acutely, yet at the same time each phase or stage presents different challenges. Currently I can get out for a couple of hours most days with the use of my dad's car. I'll meet friends, go to a cafe or the library. It breaks up my day and it's such a relief to get out. Now I'm beginning to feel I should be doing more with the time I have - ie being creative or helping others. I'm looking into the possibilities of volunteer work. In a previous phase of illness I did short shifts on a telephone helpline for people who wanted to find out more about volunteering. We referred them on to their local volunteer 'bureau' (as it was called). We'd get the odd call from a confused old woman who just wanted 'a wee lad to paint her fence.' In the end, I had to leave the job when I relapsed - but it was good while it lasted. There were comfortable swing chairs and work colleagues to joke with. That would do for starters.
Wednesday, August 02, 2006
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