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Services for people with rheumatoid arthritis

Impact on life

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Transcript

SPEAKER 1:

I work for myself, I’ve had my own practice for the last 8 years. The major impact is being able to manage my own practice because the very first symptoms I have on a daily basis is pain during the morning and that takes a good 2-3 hours to overcome – for example, just to come here today I got up at 5.00 because I have to get up and sit on my bed for a while and everything is of a slow motion - so it takes me a good 2-3 hours just to get myself washed and dressed and everything. Certainly the constant pain, the independence and the practical side of my life and I always have to depend on someone now; that kind of bothers me because my mother is an elderly lady as it is and I should be looking after her but it appears that it’s the other way around now.

SPEAKER 2:

I had my daughter in the year 2000 and I was a rheumatology nurse at that time. It was very/very difficult. I mean, for anybody having a new born baby is difficult but I had a flare of my arthritis just 6 weeks after she was born and found that trying to independently cope with her and care for her very difficult. I was fortunate enough to have a very supportive family and friends that helped me through but it was a particularly difficult stage, especially as I had to go back to work when she was only four and a half months old; so I was trying to juggle work, rheumatoid arthritis and a baby, so it was a very difficult time. Even now, after 20 years of living with the disease, there are still times when I get very down because of it and despair ‘why me?’ and that’s after 20 years, there are still periods of time when I feel that I haven’t completely come to terms with the impact, the huge impact, it’s had on my life and the lives of those around me.

SPEAKER 3:

Yes, it was very/very hard to cope with caring for my wife and I feel quite disabled myself. My wife’s got MS (she’s wheelchair bound) and I find it quite hard to do the daily chores. When you are alone with such an illness you just get very frightened and you don’t know where to turn because you’re not sure what it is you have. Once it was confirmed it was RA I felt a lot better and I’m lucky that the tablet has worked for me so far. The loss of my strength and loss of the ability to walk normally and just lead a normal life, which we take for granted.

SPEAKER 4:

I used to take the children out an awful lot in the school holidays and we used to go out with other mums and their children. Well, now I either don’t go with my children or they have to accommodate my needs, so ‘is there stairs? .. is there steps? .. can she get there on public transport?’ (because I’m unable to drive) is very difficult and yes, they do miss out, definitely. I would like anybody watching this DVD to really try to understand what an impact RA has on your life. It’s difficult to think that in 10 years’ time I might be in a wheelchair. It’s just an on-going disease, that you don’t know how you’re going to end up. It has such an impact on your family as well; there is nothing normal about our lives any more and I would like them to really think that there are some people in this life that can’t even lift the duvet over themselves when they’re really ill and it’s difficult to understand that lack of strength and I think they should see that everybody deserves to have a good, caring health team behind them but that is not the case (as I know myself).

SPEAKER 5:

I was diagnosed when I was 16 (in 1999) and then I went through my A Levels, taking these tablets that weren’t really working and then I had to defer my university entry because I was taking these tablets and they just weren’t working; I couldn't walk, I couldn't do anything for myself and so I had everything on hold. My mum and dad had to do everything for me, at times they had to carry me upstairs to bed, at times I got it quite badly in my jaw, so all I could eat were yoghurts (because I couldn't open my mouth wide enough to put food in my mouth) and getting off the toilet and out of the bath, I just had to have everything done for me and it made me feel awful because you just think at that age you should be getting out there, being independent and starting your life really but I just felt like I was still a child. On a day-to-day basis I’d say the most difficult things are just sort of having your independence; being able to just pop to the shops or even getting yourself dressed; that was a big impact on my life, definitely.

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