Peter, a father of three, was diagnosed with ankylosing spondylitis five years ago.
When he was first diagnosed he felt anger and frustration, which he often directed at those around him. Learning to turn that anger towards the disease, instead of other people, has helped him cope with the pain and limitations of his illness.
What form of arthritis do you have and when were you diagnosed?
I was diagnosed five years ago with ankylosing spondylitis, which is a form of arthritis that predominantly attacks the spine and also hits other parts of your body. It is an autoimmune disease, so it affects your health and wellbeing at times. You are susceptible to fatigue, stiffness and joint swelling.
What were your symptoms and what led you to go to the doctor?
Initially, the way I found out that I had arthritis was that I had an injury that hurt my back and I was sent to hospital. The injury had me lying in bed for about three months, and what occurred in the end was that I was going to lots of doctors and professionals and everything else to see why I wasn't getting better when I should have been. It wasn't until I chanced upon a doctor who looked at my condition and looked at my symptoms, and came to the conclusion to send me off to a rheumatologist where I was diagnosed.
What was your reaction when you were diagnosed?
When I found out I had arthritis, I was a cross between very angry and very defeated. Being younger and reasonably fit, the only times I saw limitations on my life were the limitations that I would put on myself. It was all up to me. The limitations that you put on yourself are the only barriers you have to worry about. Whereas, after arthritis, the disease puts limitations on your life and it tells you what you can and can't do, which tends to make you very angry.
I was quite angry for quite a while. I used to lash out at people. It probably affected my relationship with my wife, initially, because I was feeling sorry for myself and feeling very angry.
I guess I was also shocked, because the word 'chronic' was used, and that's permanent and very scary. You've always got the feeling that nothing very serious is going to be wrong with you, and then you find out it's chronic and that doesn't go away and it is a bit of a shock.
I knew absolutely nothing about the condition. I had no idea what AS was and what it meant. I had an idea about arthritis, but not the particular form they were talking about.
Can you describe how it feels - what it is like to have your form of arthritis?
With AS (like most forms of arthritis, I suppose), when you wake up in the morning you always feel stiff, especially if you are having a flare-up or you are going through part of a stage of a flare-up. There is also an element of fatigue, where you actually feel pretty tired and worn out. Also, because of the joint swelling, I get a lot of lower back inflammation and that's quite painful. I have quite nasty bouts of sciatica, which makes it quite difficult to walk and tires you out as well.
Does it affect you emotionally?
If you are having a bout or a flare-up, you tend to be very down and negative, I suppose, because you are looking at the point where: 'Well, if I'm like this now, what am I going to be like when I get older?' You also feel frustration because you try to do something and you can't do it, because the pain is interfering with what you want to do.
It makes me more determined with the exercise - yes - to make sure that I look after myself better, so that I don't get to a point where, in my future, I am going to be incapacitated or not have a very good quality of life. With the medication and exercise, I can actually have stages with the arthritis where I feel completely normal, like there is nothing wrong at all.
Is pain a major symptom for you, and what strategies do you use to deal with the pain?
Pain and stiffness would be the major symptoms of the disease. The best way to handle the pain and stiffness is usually hot showers, heat packs and regular exercise. Exercise is important because I find after I have done a heavy exercise session, the next day I do feel quite well.
Usually I have a really, really hot shower in the morning and do exercises in the shower to loosen up all my joints in my back. I don't drive to work; I actually walk to the station and that helps a lot. I usually find - during the day - that if I am sitting still in any position for too long, I will get up and move around and stretch, and walk home again at night. Once a week I do hydrotherapy, which usually gets me going through the rest of the week.
I believe that with arthritis you have these two lives, and one of them would be basically when you have a flare-up - you really go into a survival mode, where you just get through life and just survive. You are just waiting until the pain goes again. Then, when all the pain has gone and you have finished the flare-up, you can get back into a normal life again. That's when life comes back on track again.
For me the condition sort of shows itself and hangs round for maybe a couple of weeks or so, and then fades away. It might fade away for a week; it might fade away for a month, depending on the circumstances around you. In my case, pressures of life, the food I have been eating and what the weather conditions are like are all contributing factors.
What are your thoughts about the future, both short term and long term?
Short term, I want to do as much as I can. I have got a new job and new career, which I am really pursuing quite vigorously. As far as long term is concerned, I tend not to think about it too much. I tend to try and look after myself now, and I always have that hope that something is going to happen in the future. You don't shut the doors. You always think that, maybe, some new drug will come along that will alleviate a lot of the pain or degradation. One of the reasons that I try to look after myself now is to take advantage of that option.
Is there a particular strategy that you would like to pass on to people who have just been diagnosed with arthritis?
Keep your sense of humour, that's pretty important. You need to be able to keep a sense of humour and laugh about things a bit. If you take it too seriously, it might get a bit overwhelming. It just gets you through the rough spots. You always have to try to look at the positive side of things, not the negative. Arthritis is trying to take a lot of things away from you, so you just have to keep a positive attitude and try to take these things back. You should try to look at the things you can do and not dwell on the things you can't.
I am living a full life. I have been with the condition now for a while. At the start, I didn't have much of a life; arthritis was taking that away from me. Now that I have taken control of my life, I am taking it back again.
Have you come to terms with your arthritis? How do you manage that anger you mentioned earlier?
Well, now I direct the anger at what is responsible and that's the arthritis. I tend to consider it a fight or a battle I am having with it and determine that I am not going to let it beat me. I turn that anger into being very determined not to let it get the best of me. I find that if I am having a really bad time with the arthritis, I get very determined and very focused. Instead of lashing out at people, I tend to use that anger to keep going, pushing myself through it all. It is all constructive, rather than destructive.
Can you tell me about the sort of life you can live with AS?
For me, personally, I find that I can live quite a normal life with AS. It rears its head and takes control sometimes, but not for very long. Sometimes it will prevent me from doing things, but it will only prevent me from doing those things while it is active and then, when it backs off again, I will then go ahead and do those things - just to sort of spite it, I think. But in the long term, it doesn't stop me from living a full life.
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