Just before I started 6th-form college in the UK (I was 17 years old), my knee and jaw suddenly swelled up with inflammation shortly after getting over a nasty viral infection. I remember it came on very quickly, it was really weird. and gingerly limping down the stairs to tell my parents.
Luckily my dad, being a doctor himself, knew straight away to get me referred to a rheumatologist. I was diagnosed straight away with some sort of ‘reactive arthritis’. After a few weeks and blood tests later, it was eventually narrowed down to a ‘seronegative spondyloarthropathy’, and eventually to Ankylosing Spondylitis.
After a week on crutches during my final GCSE exams, and after the initial swelling in my knee had been drained, it didn’t bother me much over the next couple of years – the symptoms were mild. But when I was 19 and went to University, I started getting regular pain and stiffness in my back, hips, shoulders and neck, especially in the mornings and evenings.
The pain and discomfort gradually got worse, and I found A.S. started to increasingly interfere with my life. It became a drain on my energy, enthusiasm, and happiness. It started distracting me from my studies in Psychology and Computer Science degrees, and affected my sociability – I didn’t want to go out as much because I knew I would get stiff and sore as the night went on, and would just want to go home. I gave various excuses for not going out, because I felt my AS was invisible and people wouldn’t believe me. I don’t know why I felt like that, but I did. My relationship with my partner started to strain, and I found it difficult to open up. Instead I bottled it up and at random intervals I would snap and would start to argue and shout and generally be a bad person to be around.
I felt desperate and increasingly isolated – I didn’t want to complain the whole time about my nagging and endless pain and stiffness, so instead would either break into tears or scream and shout at someone for no reason. The fact that the pain was invisible to other people felt so cruel – they would only know about it if I told them, but I didn’t want to keep ‘winging’ about how bad I felt. I remember wishing that I turned green or something when the A.S. flared up, so that people would know I was in pain without me telling them.
Up to this point I was on a drug regime of Diclofenac, Sulphasalazine, Paracetamol and Codiene. This only slightly dampened the worst of the symptoms. I eventually told my rheumatologist that I was in constant, often severe pain and that I couldn’t take it anymore. My rheumy then started me on a treatment of ‘anti-TNF’ biological therapy – Adalimumab, an injection every two weeks. My life suddenly changed dramatically.
Adalimumab was, initially, 100% effective. And I mean 100%. I suddenly had little or no symptoms at all of AS. No pain, no stiffness, after only a few days of treatment.
The next 3 years were wonderful. Amazing. I had my life back. I got into indoor rock-climbing, started going out at night with friends, I even did the BUPA Great North Run (a half-marathon) twice on consecutive years to raise money for Arthritis Research UK. My best time was 2 hours 22 minutes (not bad for a beginner runner) – I couldn’t ever have imagined I could do a half-marathon before Adalimumab. My life had changed dramatically. I was promoted a few times at work, from software programmer to IT consultant. I went on treks up 3 Munroe’s, Helvellyn in the Lake District (twice) and the Cheviots in Northumberland.
I almost forgot that I had AS at all.
But then in December 2011 I started feeling the AS coming back. Slowly and gradually, the Adalimumab seemed to wear off. I had been told that this was a possibility – the body can become resistant to anti-TNF drugs in some people.
I was one of those people, and by November 2012 my AS was the worst it has ever been. I now (currently) have long bouts of severe pain and stiffness – sometimes so bad I can barely get out of bed without help, I can’t dress myself without help (socks especially!). My back and neck become stiff as a board so that I can barely walk (more like a slow shuffle). The pain is always there, either niggling in the background or smashing me right in the face so that I feel like I’ve been beaten up with baseball bats.
I wasn’t prepared for the depression and despair of losing my life to AS again. It all came back to me – the sleepless nights, the pain, feeling isolated, not being able to go out. I had some dark days.
But I’m glad to say that since those dark days I’ve built (with help) a wonderful support structure around me. My friends and especially my partner and my parents (I love them so much) have helped me get back to a positive state of mind. I exercise, do my stretches every day, I’ve changed my drug regime (now taking a morphine solution and paracetamol for the pain, gabapentin, amitriptyline, diazepam, sulphasalazine and diclofenac). I go to a local AS group for a physiotherapy class each week. I’ve got ice packs on stand-by. I have a good chair and an orthopaedic pillow. I go swimming regularly (when I have a ‘good’ day).
I’ve also joined AS groups on the internet, like the Google+ Ankylosing Spondylitis community, and patientslikeme.com, to share stories and realise that I’m not alone – there are thousands of us ‘Spondys’ out there going through the same thing.
I’m currently on a leave of absence from work to get my life sorted out and back to a state I can return to work. So now it’s a matter of building my life back together, accepting and managing my AS, and getting back to work.
That’s my AS story in a nutshell. I hope it helps other people with AS. Any Spondys out there, please share your stories and let’s try to help each other.