LIVING WITH A CHRONIC DESEASE - MY LIFE WITH ATHRITIS
I was about aged 20 when psoriasis first showed itself on my skin. It was awful – all over my scalp and down my forehead, then on to the knees and other parts of my body - itchy, scaly and unsightly. Psoriasis is a chronic skin disease that effects 2-4% of the population, has no known cure, and is normally a life-long thing. At first, I had no idea what it was but saw a doctor and received the diagnosis coupled with, what I later discovered, was very bad advice on treatment options. Over time, I have learned how to manage it and reduce its presence and severity, but it still lingers to this day and can still be both painful and frustrating to live with.
What I didn’t know at the time was that about 30% of people with skin psoriasis also develop an arthritic form of the disease – an autoimmune condition that causes joint inflammation and degeneration. This started to show itself during my 40’s with some deformities and swelling in my fingers.
As time passed, the impacts of the arthritis on my body became increasing apparent. The deformities in my hands got worse, and degeneration in the spine and other joints became more noticeable. My back now needs constant care, my left knee is a particular problem and, some days, everything hurts and I struggle to get moving. I get frustrated at times that I can’t just take a magic pill that will make everything go away and I’m cured. It’s taken time to accept it as a condition I need to live with and manage, but I still get annoyed when I feel the effects on my day to day living.
The disease impacts on my life in many ways. I get tired fairly easily and fatigue sets in quickly if I push myself too hard, don’t get enough sleep, or don’t take time to recover from life’s activities. My hands are now deformed to the point that they don’t lay flat, and something as simple as applauding needs a different approach. Things that involve hand strength – like opening jars or doing some pruning in the garden – can at times be difficult and painful, and need specific tools or new approaches to help me do them. I follow a plant-based diet for other reasons, and also try to keep to healthy food options, and both of these help in terms of limiting inflammation triggers. They also help in keeping my weight in a good place – overweight and arthritis are not a good mix. I still need to avoid some foods though – nightshade vegetables in particular, such as eggplant, potato, tomato, chili, and capsicum – that make the joint inflammation worse.
Despite all of this, I made up my mind long ago that I wasn’t going to resign myself to a passive life, or one where I simply reverted to medications to try and put a patch on the issues I was confronting where lifestyle choices could achieve the same or better results. I made a lot of changes in terms of diet and life stressors – stress is a major inflammation trigger. I can’t run because of my troublesome knees, but I can put the boots on and go out hiking. I get out on my bike regularly and am still able to do long distance riding. The gym is one of my havens, but I struggle with moving weights that have a pulling motion or that otherwise put strain on the fingers. I manage around it with exercise choices and, when needed, use a hook on my hands that straps to my wrist to help my grip. I still get out and about with other interests, including my photography. All of these things not only help with my mobility, but also with helping to maintain a positive outlook on life. I’d like to say I’m always OK with it all and am at the point of full acceptance, but I still need to give myself a good pep talk every now and then. I also try and remind myself that, of all of life’s lotteries in who gets what in terms of ailments, I’m not in such a bad place. I have a friend who is 10 years younger than me and was recently diagnosed with motor neuron disease. It a truly terrible condition and she won’t be with us for too much longer. Psoriasis, in both the skin and arthritic forms as I experience it, and manage my life to deal with it, is not the end of the world.
I’m 68 now, and my lifestyle decisions are helping me live a healthy and active life despite the issues the disease is presenting. How things will play out for me over coming years is yet to be seen, but my approach is simple – focus on what I can do, not what I can’t, and get on with life.
Don Clifton
2024
