The National M.E. Centre - Caring for People with CFS / ME

The following Story is by Lucy McGee about her stay as an in-patient at Oldchurch Hospital.

Getting to grips with ME...

...with a little help from some friends!

When I arrived at Oldchurch Hospital, although tired from the long trip and ready to collapse, I was extremely frightened. If like me at some period during your illness you have had trouble with health authorities, it's hard to imagine that any hospital would like to help you without putting you on an exercise bike and have you peddle through a series of relapses.

If you thought that about this hospital then you are very wrong. They don't pretend they have a miracle cure to get one better, but through their experience and numerous successes they have found that they can improve your quality of life by using a simple programme. You and your OT (Occupational Therapist) will work that out together. But all it is, is your day planned out through activity and rest periods.

Activity can just be sat up in bed propped up with pillows. What the programme aims is to stop the 'peaks and troughs' that we all get. By following the programme it makes you stable and gets year body into a routine. Gradually you up one or two things at a time by approximately fifteen per cent. It is very slow progress but with this illness as we know, we can't rush things just because we had a good day yesterday.

Although I've just actually come back from Oldchurch Hospital and am only now able to put the programme into action, I can actually see it working. Even if I were only to become stable through this I would be very happy.

As for the staff, they are extremely nice and actually believe in ME - which feels weird as you are used to a constant battle. You are assigned a named nurse who will talk to you and generally explain things and answer any questions. Mine was a God-send and I don't know what I would have done without him. But what was more amazing for me was the actual patients, because we became one big family and support group for one another.

I really see this trip in hospital as a holiday mixing with all different people. It's nice to be normal even if it only lasted about a month. As for the young doctors they are fabulous! When I was able I would write a list of things I would like done or answered and give it to them as they were passing. They were brilliant as they actually came bock to see you later that day or spoke to Dr. Findley for you if you forgot to ask him something.

Dr. Findley does the rounds two days a week. Tuesday is a sort of fly-by visit but on the Friday you have quite a while, which is nice.

Although they can't give you an exact time for recovery ever with this illness, Oldchurch hospital have found that most patients get better on Ward A1 between 2 - 5 years and on B1 six months to two years, which does give some hope. I actually met old patients who had recovered and it was amazing to see. You can actually speak to one prior to going in.

If you are going into this hospital, look out for the cool Chaplain called Steven. I am not religious in any way but we became great friends, which was surprising since our first conversation went along the lines of "so did God get Mary pregnant then?"

My advice to any of you going in is to be positive and get the most out of your stay, but don't expect to come out cured. Don't be afraid to question anything that you're not sure about or understand. It isn't some prison camp so don't be afraid it's a waste of energy!

I would also like to give an example of my stay. On my first night I buzzed to he wheelchaired to the toilet, which I find not only frustrating because I am not able to get there myself but embarrassing. So when a nurse answered my ring I started babbling nervously as to why I had buzzed. She gave me the strangest look before interrupting with 'look, you are ill. You don't have to justify why you rang. We are here to help you in any way we can.' Smiling and putting her arm on my shoulder she asked 'O.K.?'

Someone in the medical profession saying that for me is like someone telling me I have won the lottery. What makes it even more special is they are all like this.

It was also great to meet patients who were in for their second visit and had improved so dramatically since their first stay. When able they would come down and speak to me at great length as to how the Hospital had helped them so much. It's rare that you hear of any person with ME (Chronic Fatigue Syndrome) praising a hospital.

I wish you all the best. I'd be happy to explain more to any of you who are interested and I'll let you know how things are going.

Keep smiling,

LUCY McGEE