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Rebecca Barnard

2017-03-09 11:37

Dorothy's Story

When I was about sixty years old I realised that something was wrong. I had been feeling quite unwell and I had been suffering from aches and pains for a long time, but thought it was due to getting older. At the time, I remember I was trying to do 10,000 steps a day on a treadmill at home. I lived in Australia and worked from home, so I could go on the treadmill whenever I wanted. The problem was that my feet really hurt, so much so that I was almost in tears - I could hardly walk. Another problem I had was fatigue. I would be nodding off at my computer, my head lolling forward, just like people do on the bus on their way home from work (not a pretty sight I might add). So, I would go for a lie-down and end up falling asleep for about three hours. Then one day I just couldn't get out of bed, literally, I was in so much pain I just could not get up.

My husband took me to the doctors who sent me for some tests, bloods being one of them, which is when rheumatoid arthritis (RA) was discovered. I must say that I was very lucky as I was diagnosed within a few days and referred to the hospital for treatment within a couple of weeks. The doctor prescribed the statutory methotrexate and hydroxychloroquine.

At that time, the Arthritis Society of Queensland held a course on RA, so my husband and I went along to learn about the disease. It was very informative, but one of the things that came out of it was that if you are taking methotrexate, you should stay out of the sun! Can you imagine living in Queensland and trying to avoid the sun? It's not easy!

I have a lot of trouble with my hands swelling; I even had to have my wedding ring cut off, which was upsetting. For the next couple of years, I continued to see the RA consultant at the hospital and my doctor who were both very good. Then a few years ago, we returned to the UK, and my local doctor referred me to the nearby hospital for treatment. About this time my disease got a lot worse. I don't know whether it was the stress of moving back to the UK, but I was having flare up after flare up. It got to the point where I couldn't get out of bed I was in so much pain. I couldn't go to the bathroom, I couldn't drive - I couldn't do anything. I thought my life was over, and it was a terrible feeling. My husband had to do nearly everything for me including washing and drying my hair. I couldn't lift my arms to do even this simple task and I wasn't tolerating the sulfasalazine (which the consultant here prescribed) very well. When I discussed my problems with him, he advised me to go home and take an iron tablet every day. I was never offered an alternative to sulfasalazine.

My nose was bleeding every time I wiped it, and my hair had become very thin and started to fall out thanks to the methotrexate. Fortunately for me, I was referred to a different consultant at the hospital who changed my medication to a biological drug. This has given me my life back. The drug I am on now is called tocilizumab and is administered intravenously every four weeks. I still have a few flare ups, and find it difficult to do some everyday things, but I can manage most of my daily life by myself. Sometimes it is still a struggle as I was a very active person: I was the one who did all the decorating - wallpapering was a doddle, I loved doing it, but I can't hold a paint brush properly now; I made the curtains - I sewed to my hearts' content - but I can't do any of these things any more and it can be very frustrating when something needs to be done and you need to ask someone else to do it for you. Even little things like opening jars or cartons of milk, things that most people take for granted every day, can be extremely painful for somebody with rheumatoid arthritis. I can't even drive a manual car any more.

I am sixty-six years old now, I still have a lot of pain in my feet, but I think that my health problems have been caused mainly by stress, as just before I started to be ill we as a family went through a tough time. I joined Cloudy to see if it was the weather that caused my flare ups. At the present time I am still not sure what causes them. It could be the weather, as I live just outside of Manchester, which as we all know is a very wet area. It's not at all like Australia, where it all began, although the humidity is higher there.

Fortunately, I am retired. I have been offered a couple of jobs that I have refused as I know that I might not be able to work every day and I wouldn't want to let anyone down. I have taken up knitting and crocheting to keep my hands moving. I have also joined a Tai Chi class which I find a great help and I now meditate every day. It works for me.

If you would like to raise awareness around the impact of pain and the reality of living with a pain condition by sharing your pain experiences, please email cloudypain@manchester.ac.uk.