There is a lot to think about when trying to arrange a holiday for people with severe M.E.: Will it be quiet enough? How much assistance will people need? Will the caterer manage all the special diets? In May, after advertising in M.E. publications, my mum and I organised a week’s holiday in Oxfordshire for those severely affected by the illness on a ‘first come first served’ basis.
Those involved were asked to avoid things like perfume and aftershave and we provided allergy-friendlier cleaning products beforehand. Volunteers organised by the local Rotary club stuck card to the windows of those who would have trouble with daylight.
Volunteer carers kept costs down
We had sent a questionnaire to the ten participants with M.E. to try and gain some idea of their needs. In retrospect, perhaps we should have asked them to describe their illness ‘at worst’ as several were more ill than expected. Some people were able to get funding through Social Services and we also had some grants from the 25% M.E. Group and local Rotary clubs. Using mostly volunteers kept the cost down, but the expense still excluded some.
We are in the privileged position of having many healthy contacts with enough understanding of M.E. to be asked to help. Several of them visited us beforehand to learn more, two read books on M.E. and they were all given a specially written leaflet. It would be hard if you had to train everyone from scratch, as M.E. is so complex and varied. It is particularly important that they understand how very easily energy can be used up by things that most healthy people wouldn’t even notice. Eight helpers was about right for the daytime, plus extra for activities; when there were only five they found themselves overstretched.
Shared silences and special visitors
Most of the rooms had a spare bed, which enabled people to go and see each other when they were up to it. We sent messages back and forth to try and coordinate our activity ‘windows’. Visits often had to be brief, and people didn’t get to meet everyone, but we all enjoyed the contact. ‘Shared silences’ were popular; resting is usually such a solitary experience and it was good to have understanding company without using up lots of energy talking. We also enjoyed waving and smiling to each other across the courtyard.
There was the opportunity to stroke and hold a bat and to learn a bit about them from a local expert. They vibrated and opened their mouths as they sent echoes around the room; we could hear their clicks with the aid of a machine. Dogs and a parrot also visited and the on-site guinea fowl and cockerel entertained us, thankfully without crowing at dawn. Obviously, we had to prioritise which activities to try, but there was the option of hand massage, Holy Communion, guided relaxation, listening to a flute, reflexology, and trying out several types of wheelchair.
It was over too soon. Most of us had to spend the majority of the time alone being ill, so a week doesn’t include that much ‘holiday’ time. But it was by far the most enjoyable week I have had since my illness began. Meeting others with severe M.E. was an experience I will treasure. There was no need for all the usual explanations - I felt accepted and understood.
Printed in InterAction, the journal of Action for M.E. issue 38 September 2001
ACTION FOR M.E. P.O. BOX 1302, WELLS, BA5 1YE, UK