At the age of twenty-five, in 2010, I was diagnosed with a chronic inflammatory arthritis and autoimmune condition called Ankylosing Spondylitis. If you had told me at eighteen that in less than ten years I would be dealing with a life-long chronic condition, I would not have believed it. I was fit and active and always very busy.
I first started getting pain when I was travelling in India, aged nineteen. I started limping and friends asked me if I had hurt my leg. I said I hadn’t, and was confused about why I was in pain. Over the next few years, although it was intermittent, the pain grew worse. It was mostly in my back and hip joints at first. I was at university and lived at the top of a steep hill. I began to dread walking up that hill. I went to the doctor, who referred me to the physiotherapist. I received some physiotherapy, but the pain continued.
Following university I moved about a bit, finally settling in Newcastle. The pain continued to get worse. Sometimes I was in so much pain I could hardly move. I was eventually seen at a musculoskeletal unit who sent me for some x-rays. I am grateful to the specialist physiotherapist who worked there, because there were only small changes visible on the X-ray. These could have been nothing, but she had some suspicions, and took the X-ray to a rheumatologist who said he wanted to see me. I got the diagnosis a few months later.
AS chiefly affects joints in the spine and the pelvis, and may cause eventual fusion of the spine. It can also attack many other areas of the body such as the eyes, heart and lungs. There isn’t a cure, so it is a life-long condition.
As for how I personally experience it, there are three main ways. The first is mobility issues. The disease makes me very stiff – and this is particularly after I have stayed still for a long time. Getting out of bed in the morning is often agonising, and it can take me a couple of hours to loosen up properly.
The second, and probably worst way I experience AS, is having a lot of pain. Over the years, it just got worse and worse. It hurt me to stand or sit still for anything more than about ten minutes. When the pain was particularly bad, I couldn’t bear to move. The rheumatologist tried me on stronger and stronger anti-inflammatories, but eventually I was moved on to adalimumab, an anti-TNF treatment. I inject myself with the medication every fortnight. This has substantially reduced the pain, but unfortunately it also lowers my immune system. This means I am more likely to pick up infections, which can quickly become dangerous if left untreated.
The other element of the disease is fatigue. I get frustrated because I get tired so easily. I’ve now learned how to pace myself, but it is sometimes hard not to be able to do as much as I’d like.
I have issues with my eyes because of the AS. Iritis is a painful eye condition that AS sufferers often get. If I think I have it, I have to drop everything to go to Eye Casualty because it can lead to vision loss. Thankfully, the adalimumab has also reduced the number of incidents of iritis!
I also have problems with inflammation in various other areas of my body as well as my spine and hips. I get costochondritis in my ribs, which is very painful, and plantar fasciitis in my heels. I also get pain in other joints such as my ankles, wrists and hands, and of course, my neck and shoulders. Often the disease makes me feel as if I am ninety years old!
I also have some trouble with my heart, which could be due to the stress my body is under from the AS. Sinus Tachycardia is described as a condition in which an individual’s resting heart beat is abnormally high. It causes (as well as palpitations, obviously) shortness of breath, fatigue, exercise intolerance, drop in blood pressure on standing, dizziness, sweating, and passing out. Thankfully it is mostly under control due to medication.
In addition to these conditions, I have been diagnosed with Joint Hypermobility Syndrome. I have had two operations on my ankles – ligament reconstructions – in 2015 and 2016 – in an attempt to stop them from giving way all the time.
Finally, in 2017, I was diagnosed with Crohn’s Disease. This is associated with AS, but I was disappointed to discover that I had another issue to contend with.
I take medication daily. I inject myself with adalimumab fortnightly. I see ridiculous numbers of doctors, and know my way around most of the hospitals in the area.
As a result of my illness, I’ve definitely used writing more and more as a way of channelling my thoughts and feelings. Many of the poems in the PhD collection, which were then turned into my poetry collection which will be published by Red Squirrel Press, have been produced because of the illness I have, and the many experiences I’ve had of doctors, and hospitals, and living life in less than perfect health. It gave me a way of expressing myself when I felt very powerless, and a way of turning negative experiences into art.
For more information on Ankylosing Spondylitis and its effects, the National Ankylosing Spondylitis Society website is very helpful.