My Story

14/01/09: By Sue Willing, NRAS Member and Volunteer in Scotland

It started in my little fingers, and then my toes, and initially the GP thought I had reactive arthritis. This meant it took another three months before I was referred to a Rheumatologist, and then another three months' wait before I actually got to see one! These were some of the most difficult months as my body seemed to be doing strange things; I was getting increasingly stiff and exhausted and was also in a lot of pain.

When I finally got to the Rheumatologist it was almost a relief to be told that I had rheumatoid arthritis, as I had been quite frightened by all the things that were happening to me. At the same time it was a huge shock and I remember coming home feeling heartbroken.

I was prescribed methotrexate, which worked really well for me for three years, and so I came to terms with having RA relatively easily, thinking that so long as I carried on like that life wouldn’t be too bad.

After three years though, the methotrexate was no longer effective and I had to stop using it. I was then put on sulfasalazine and hydroxychloroquine, but after two weeks had a very bad reaction to them and had to stop.

Next it was leflunomide, which worked really well for four or five months. So well in fact that we booked a winter holiday in Switzerland. I didn’t ski, but I was able to explore the beautiful winter hiking trails around Grindelwald, meeting some very friendly people on the way. The holiday was so successful that we have gone back to the same place a second time.

 
Unfortunately the leflunomide was only effective for five or six months. There followed a rather difficult period of a month when I was on very little medication, before being allowed to try an anti-TNF treatment. This has been very effective and has given me so much more energy, besides bringing relief from pain and reducing the stiffness I was experiencing. The down side is that I have had pneumonia since being on it and had to take a break from treatment, although I am now back on it. This has brought home to me how powerful a therapy the anti-TNF drugs are, but I do really appreciate the quality of life they have brought me, and hope I can stay on this one for a good while.

I have found it difficult to come to terms with having RA, and I still have some days when I feel quite low about it. Still, in many ways there have been good things. Most of the time I can still cycle and swim, two sports I enjoyed before I got RA. I can still do some hill walking. With all these activities I have had to reduce my expectations as to what I can do, but in other ways having RA has made me appreciate and enjoy them far more than previously, when I took such activities for granted.

Prior to having RA I was employed as a Social Worker, and managed to continue to work until November 2007, when I finally decided the job was too stressful and tiring. I had been reluctant to give up such a major part of my life, but it came to a point where it was too demanding and I felt that I wanted to keep my strength and energy for my family.

Since then I have undertaken some re-training and am in the process of starting up a new career leading music sessions for babies and toddlers. This is something that is very flexible. Whilst I have been sad about giving up work that I trained hard for, I feel I am now able to look forward to the future again and do something which I really enjoy.

As time has gone on I have come to realise that there are some benefits to being forced to live a less busy, demanding life. I feel I am able to spend far more time with my family (my daughters are 12 and 9) than was possible before, and enjoy hearing all the latest gossip from school when they return home at the end of their day. In the past I was probably more stressed and rushed and less able to give them as much attention as I would have wished.

Since being diagnosed I have taken up a new hobby which I would never have had time for before. I started by going to a class in warm glass techniques. This involves fusing and “slumping” glass. I have now attended classes, made new friends and discovered that I love working with colours and shapes. Until then I had never thought I was very arty. I have a kiln of my own and enjoy the times I can escape into my shed and be creative.

I don’t think it’s easy getting used to having RA, and sometimes I do feel frustrated by the uncertainty of it all. Still, in some ways the difficult times only serve to put the good times in perspective. I value the fact that I can still lead an active life, I can still usually do some sport and enjoy the outdoors, and I have more time with my family than previously.

Additionally I have discovered the pleasure that can be gained from a new pastime, and I feel that this has opened up other possibilities for me, since I would now love to do some other art courses at some time in the future.