Stene Prize submission 2005

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Coping with the fatigue and tiredness of arthritis/rheumatism: a personal perspective

coping

I was diagnosed with psoriatic arthritis at the age of twenty. Up until this point I had always been very active swimming, squash, cycling and travelling. Whilst the pain and swelling in my joints was frustrating, the overwhelming difficulty was managing the tiredness. I would come in from work, eat and go to bed. My social life very quickly disintegrated. I felt completely exhausted all the time. I can only equate it to working for twenty-four hours without sleep and then living indefinitely with sleep deprivation. The difficulty is not feeling tired today, but feel tired day after day, year after year. In the early days I didn't cope, I survived, staggering from day to day. Working shift work made it impossible for me to get into any sort of routine. On top of all the other symptoms associated with arthritis, I was grumpy and found it difficult to concentrate. This made studying twice as difficult as I would easily fall asleep finding it was hard to retain information. The overwhelming fatigue continued to eat into my social life as staying out late just exacerbated the problem. I very quickly learned who my real friends were and thankfully they were more flexible and accepting of me.

It was only after other symptoms were dampened down with drug treatments that it became possible to begin the process of coping with the fatigue and tiredness. In the early years I had no idea that this tiredness was part of my arthritis, I just thought it was me and my life style. I never met other people of my own age with arthritis, so I had nobody to compare notes with. I often felt lonely and angry with myself for not being able to do more. I would like to say that life was easier when I was in a remission but I can honestly say that even in remission from the painful swollen and stiff joints, I never managed to shake off the tiredness. Having lived with fatigue and tiredness for 23 years now I can honestly say I don't remember what it is like to wake up in the morning feeling refreshed and full of energy. I say this to point out that for me feeling tired all the time is the norm now.

from coping to managing

In my opinion coping is a short-term strategy and arthritis is a life-long disease. What I needed in the early years was support to manage my tiredness. It would have been great to meet other people who were having similar experiences. There is nothing better than feeling that there are others who share similar daily dilemmas. Coping is not enough: living is the goal. I hope that I am beyond coping with my tiredness, over the years I have learned to live with it. There is no point in fighting it, because ultimately it's part of who I have become and I can't change that.

Thankfully my more enlightened Consultant, plus my first ever stay in hospital, opened my eyes to the totality of what arthritis is all about. It was only when I was in my thirties that I found out that feeling tired is part of the lived experience of having this disease. It was also at this time that I began to meet other people who had arthritis and I began to see that there were ways I could learn to live with this fatigue and tiredness. Their positive outlook on life helped me to let go of the things I couldn't do anymore and focus on those things I could do. This came at just the right time for me as I was also a new mum, a time when sleepless nights and a new way of life are unfolding.

listen to my body

I have had to learn to listen to my body and plan my day. I can't do as much as I would like and of course it is difficult to plan ahead as arthritis is very unpredictable. Fortunately I have never been a creature of habit so changing plans at the last moment is fine with me. However this is not so easy for the rest of the family, who all have commitments and need to be ferried from school to dancing or football. Consequently my days revolve around using the energy I have to do what has to be done. Fitting in time just for myself is hard. If I want to go out in the evenings then I must fit in a rest in the afternoon and be prepared to spend extra time in bed the following morning. So my natural urge to be spontaneous, which is so dear to my soul, is often unrealistic. I sorely miss it. Some things always have to give, so life has become quite a juggling act. My husband and daughter are very used to having to fend for themselves in the evening as I will disappear up to bed early. My bedroom has become my office and court, with everybody, including my daughter's friends reporting to me on their plans for the evening. It may seem strange in other households but nobody bats an eyelid when they stay with us. I no longer have "guests" to stay in my house; I have friends. Anyone who stays quickly learns to fend for themselves and discover what is in all the cupboards in the kitchen. This way we enjoy each other's company and I avoid getting worn out.

Whilst managing my tiredness on a daily basis is now possible, it becomes more difficult if I am taken out of my usual environment such as on holiday, or extra demands are made of me like Christmas shopping. Recovering from extra demands takes days, and whilst holidays and shopping are enjoyable I always come back very tired. These difficulties are practical, and the solutions likewise, pacing myself and allowing adequate rest is the solution.

positive self-talk

Life becomes truly problematic when the mind plays its part. If I reminisce on all the things I used to be able to do or I try to compare myself with my able-bodied friends, I know that I am moving into dangerous territory. This is a dangerous and upsetting mind-game that can lead me to feeling very depressed, consequently unsatisfied with my life and of course even more tired. I try to avoid these negative thoughts at all costs. However it is not always possible to stay positive and negative thoughts have a way of getting you when you least expect it. Once in a negative mind-set it is very difficult to get out of it, all things take time. I have begun to recognize the early signs of when I am starting to become negative and I try to replace these negative thoughts with positive ones, not always successfully. My energy is precious and I am always learning new ways to treasure and protect it.

partnership with professionals and peers

Finally, I would like to say that whilst it is useful to focus on one aspect of this disease, such as fatigue, I feel it is essential to recognize that it is indeed a very complex package of symptoms which collectively create a unique scenario for every individual. Our health professionals can help us to pin point difficulties and suggest management solutions to us. I have found it is easy to lose sight of the central issue that needs dealing with when living the totality of the disease twenty four hours a day. My Consultant helps me to keep a clearer perspective on what needs to be done. Patient organizations, magazines and training courses are also extremely useful and have helped me greatly to understand how I can manage my life more effectively. I must confess that I have learned the most from my peers, often over coffee just chatting and spending time together. Drug treatments have come a long way and the new anti-tnf treatments are having a very positive effect, however none of this can replace the value of an empathic partnership with our health care professionals and the chance to meet with our peers in arthritis.

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