Help, I can't cope!

Getting the diagnosis of osteo and rheumatoid arthritis wasn't what I wanted or needed and I was aware that I needed help at home.

We had moved from a single floor living area house to one that covered 3 storeys and I was struggling with the stairs. I tired very quickly and the pain was getting out of hand. My GP told me to visit the Centre Sociale which we did and made an appointment. The lady who saw us spoke English which made things easier. She completed the forms for us and she asked for everything and anything 'to see what we get!)

The paperwork went to MDPH, (Maison Départmentale des Personnes Handicapée) and I was visited by an occupational therapist who got me an electric wheelchair which changed my life. I had a visit from a lady who told me I could have various aides techniques to make life at home easier and as I couldn't easily use knives and forks some special ones of those and a preparation board to prepare meals.

Suddenly I was told I couldn't have the aides techniques as I was approaching my 60th birthday and if I accepted the proposition from MDPH I would be locked in for 10 years. The alternative was to go over to APA (Allocation Personnalisée d'Autonomie) which is not just for disabled people but also for people with reduced mobility. I got home help to clean the house twice a week and the promise of the aides techniques.

We decided that the problems I had in getting up and down stairs and not being able to access our garden meant we should move again. The house we chose is in a different départment but offers me the best solution. We are in a village with commerce and I can easily access the rooms in the house as well as the garden. After a bit of tooing and froing the APAs sorted themselves out and I have now got aides techniques I need. I can prepare meals, shower and best of all have a knife, fork and spoons that are comfortable to use. I also bought myself some preparation knives which you hold like a saw and fit comfortably in the hand.

Luckily I am able to continue with the rheumlatologist that diagnosed me although it is almost an hour's drive. I am glad I have stuck with him as I am having problems with my eyes. This, I understand, is caused by cortisone. I have been seen by an opthalmologist here since we moved permenantly and he says that as yet I haven't got cortisone cateracts. However, I am experiencing problems using the computer, watching television and reading as well as general soreness such as gritty eyes. For this he has prescribed eye drops.

Medically I am being cared for, the rheumatologist sees me 3 to 4 times a year and he is desperately trying to reduce the tablets but as soon as I get to a certain level the pain is too intense. Since Christmas Day I have had 4 flare ups with my arthritis; the first flare was Christmas Day itself.

There are days I feel very depressed and that is the hardest part of the whole experience. I am not only fighting the arthritis but also the effects of the previous strokes.

Hi just read your blog …very moving it sounds like a tough time at times I think you are a very brave person for opening up in this way and the only thing I can say is keep fighting don’t let your head go down because that is the easy way take every day one at a time and thanks for sharing what must be a very difficult and private illness, you have helped me to remind myself to keep the head up.