I feel strongly that specialist facilities should exist for people with severe M.E. to have a change, meet new people, and have different experiences, within the confines of their illness. This would also give families a break from M.E. - time to be noisy, decorate, catch up on jobs or go on holiday.
So when I chanced upon a local respite care facility in surroundings that seemed ideal, I was keen to see if it could be done - and ZoŽ was equally enthusiastic. We thought it would be possible to find other people with M.E. and use all the rooms.
What we didn't envisage was becoming responsible for more and more aspects of the week. We planned to train the carers by hiring them to look after ZoŽ at home in the preceding months. However the agency collapsed and we had to rely on people we knew to volunteer. One of our main helpers developed appendicitis so the preceding week we were asking some people who had never met anyone with M.E., in order to try and cover all the care we needed. It made me feel a lot more kindly disposed towards agencies, who have to do this sort of juggling every week.
Problems were getting worse at home as we struggled to cope with severe M.E., a family crisis, and the Kingfisher Barn jobs and paperwork. Then sewage flooded one of the rooms - right where we were stacking things for the holiday. It took all day and a succession of men to get the pipe unblocked. Anxiety levels reached new heights!
Although there were many hurdles, and everyone with M.E. took brave risks in coming, I think we can say that the week was a success. Seeing all those closed doors with ill people behind them was striking for the helpers, knowing also that there were many more people who couldn't make it. They enjoyed the experience, learned a lot about M.E. and felt part of something worthwhile. See also InterAction 38 Page 43
This article was printed in The Quarterly Ė the newsletter of the 25% M.E. Group Issue 12 Winter 2001
25% M.E. GROUP, 4 DOUGLAS COURT, BEACH ROAD, TROON, AYRSHIRE, KA10 6SQ UK