Message from our Chairperson

Since I first became aware of this illness through my own experience I have tried to help others to deal with theirs.

Over the last 14 years I have seen many changes and attitude towards this condition some good some not so good my suggestions to cope with this illness is as follows:

Keeping a diary

Symptoms vary from person to person, day to day, hour to hour, some days you may feel OK, other days dreadful. Generally the Doctor will give you all sorts of tests and they will come back negative.

If you keep a diary, (it need not be long) of your activities or lack of them, what you eat, what medication you take, when you sleep, you can perhaps get some idea of what triggers a relapse.

Importance of Rest and Pacing your activities

Rest is the thing which will help most, especially in the early stages, not always easy, listen to your body and when it tells you it has had enough, then sit down, or go to bed if you need to.

Do only half of what you think you can do, rest for half an hour between jobs, and take only half an hour doing them, at the most. Lots of jobs can be left, you don't need to dust and clean every day, once a week may well be enough, if not even longer. You do not need to iron a multitude of things, as you wear them or use them they will loose their creases.

Tips

A crock pot can give you a couple of day’s dinner; perhaps you can do enough vegetables or pudding for a couple of days.

You don't need to have a bath or a shower, or wash your hair etc. every day, you can just wash your face and hands if you are feeling awful.

My Role

I know that everyone is not affected in the same way by this dreadful illness/condition/disability and I feel as leader of our group that my role is to be a spokes-woman on the illness.

With this in mind and with help from Janet our administrator and my band of helpful volunteers, Karen, Janet, June, Fiona, Anne and Margaret, my job of trying to reach out to all but especially the young people of the community by making contact and then helping Educators, Consultants, GP’s, Nurses, and Social Services, to understand the services needed to help ease the loneliness and the burden of care that this illness brings.

SO WATCH THIS SPACE!!

Take Care Keep Well, All My Love Barbara XXX