There are big unforeseen events in our lives that we never forget. Do you remember what you were doing when you heard about 9/11, when John Lennon or Ueli Steck died? In the same way, I bet everyone with Ankylosing Spondylitis or other nasty diseases remembers when they got the diagnosis, and learnt that the cause of their symptoms has a name.
I can also remember my first attack of strange low backache very clearly. I was 24 years old. At the time, I couldn’t have known that this backache would become important, and yet intuitively I sensed its significance. I was a student and had just got a fantastic Summer Job looking after 3 race horses. I remember taking a hot bath and willing with all my strength that the pain should go away. It did – for a while.
However, from that point on the pain kept coming back. My whole adult life was plagued by phases of severe back- and neckache and stiffness. I often felt totally exhausted and was frequently ill. Sometimes doctors found something wrong with me. Mostly the symptoms went away for a bit by themselves, and I got on with life. The good times often lasted a year or two.
Now fast forward 31 years to the day I got the diagnosis at the age of 55 that I had Ankylosing Spondilitis (AS), an incurable type of arthritis. Of course, it was a life-changing event; finally, I had an explanation. Answering the questionnaire at the Rheumatologists was almost surreal. The questions exactly fitted me! I felt enormous relief that my suffering had a name. I felt amazement at how I had managed so long. I felt bitterness at doctors who over the years had told me that I had a curved spine, too heavy periods or psychosomatic problems. I felt shame that I hadn’t thought of it myself. My grandfather had AS, as does my brother, but I’d been told many years ago that women don’t get AS, and had never questioned that information. Finally, I felt sadness and fear. AS is an autoimmune rheumatic disease, which means that my own immune system attacks me and makes me ill. Therefore, a cure is very difficult, if not impossible. I read horror stories about it on the internet, and dry medical summaries about the difficulties of treatment and possible development. My grandfather died young, and I’d seen my brother’s years of suffering. How was I going to manage?
I asked my Rheumatologist if he could be mistaken. He said there was no other disease that caused the changes to my spine that he could see on the MRI. So, Ankylosing Spondylitis was a part of me. A part that I really thought I didn’t want. I couldn’t see any good in having AS at all.
The big flare-up
The diagnosis coincided with a big flare up. I was in unrelenting pain, could hardly walk when I got up in the morning, and spent nearly an hour doing exercises to reduce the stiffness. The rest of the day it felt like walking through deep mud. The exhaustion – “fatigue” as it’s called – of an autoimmune disorder is hard to describe. I often had this overwhelming desire just to lie down exactly where I was, close my eyes and switch off. I wonder if people noticed. I think they did. Sometimes I still want to contact such people, and explain. “Sorry that I acted so uninterested in you that day, sorry that I didn’t really engage with you, please don’t take it personally!”
The big flare up was probably partly caused by stress. Life had been horrible in the year preceding diagnosis, both professionally and personally. The pain and exhaustion were never ending and instead of going away again, as my symptoms always had in the past, they just got worse and worse. I lost my job and felt as if I was fading out of life.
Like most rheumatic diseases Ankylosing Spondylitis is not fully understood and there is certainly no cure at present. But there are now some treatments that improve life for many people. My rheumatologist suggested that I try one: a medication called a TNF inhibitor. It helps the majority of patients. Given regularly by infusion or injection it would suppress my immune system, thus stopping my body from attacking itself and making me ill. But, doesn’t the immune system have a rather important function, which I need? This treatment would be backed up by a weekly injection of a medication mainly known for its use in Chemotherapy. Won’t my hair fall out?
I looked on the internet again and scrolled through pages of side effects and warnings. Long term effects? Unknown. I was already taking 12 different sorts of pills, mainly painkillers, but also treatment for loss of bone density, a fungal infection, some alternative medication and some pills to reduce the side effects of other medication. These new drugs didn’t seem appealing at all. So, I said no to more medication. I had been doing yoga in the morning for 30 years already, because it loosened me up. I had practised a lot of sport. I meditated to reduce stress. I ate very healthily. Now I would be even more disciplined about sport and eating and sleeping and stress reduction. I would get back control of my body without putting more poison into it.
That’s what I thought. But this time, it just didn’t work. It didn’t matter what I did, I just got thinner, and weaker. The only real pain relief was opiates, which made me feel blurrily nice, but like a zombie. I took them in the evening, lay down on the sofa in despair in front of the TV.
The turning point
As winter came, weighing 49 kg and totally consumed by never-ending pain, I gave in. OK, let’s give the immunosuppressant a try. I wanted to go to London and visit my family at Christmas and hoped that I could start treatment before the trip. I was very disappointed that this didn’t look possible. A range of check-ups were needed before treatment could begin. Firstly, there were some inoculations to do. Then there were checks that I didn’t have a form of hidden TB. I had travelled to East Africa the year before. So, the doctor made sure that I wasn’t carrying some nasty disease from there. My dentist decided to take two teeth out that might go bad and get infected. The whole procedure took several weeks and I was very tense during this period, but thanks to the doctors’ effort, it was just possible to fit in my first treatment before Christmas, on the 23rd December. Phew!
It went fine. The staff at the hospital looked after me wonderfully. They even gave me tea with real milk. A rare treat in Switzerland, where tea is generally served with cream. You probably think I’m nuts, but details mattered. I really liked that.
I didn’t feel any different immediately, but that’s normal. Everybody reacts differently to the treatment. Some people take up to 6 weeks to feel the effects. And sadly, for quite a few people it doesn’t work at all.
The next day was Christmas Eve and I was flying to London with my two teenage kids. I was happy to be seeing my family. I was happy that the infusion had been without problems. And having initially resisted treatment, I was now very positive about it. I was pretty sure that it would work. Although I could no longer walk more than a few yards, I didn’t mind on that day. A neighbour drove us to the station. At the airport, I had ordered wheel-chair. We got on the plane first all by ourselves. Even the passengers with Speedy Boarding had to wait. My kids were quite embarrassed.
But at my mum’s house in London I slept very badly. The mattress was old and lumpy. In England, we celebrate Christmas on the 25th but I woke that day feeling like I’d spent the night in a tumble dryer.
My mum loves to go to the Church service on Christmas Day. We walked together very slowly and stiffly to the Church. And that was the amazing thing: I was stiff, but the pain had receded and I could walk those 300 meters! The congregation sang the old Christmas Carols from my childhood and I cried my eyes out through the whole service. I felt properly alive for the first time in months. My own personal miracle had happened.
The next day we walked to the park. Every day on that London trip I could walk a bit further. I started doing some simple yoga exercises in the morning. For months, I been telling myself that I was not my body, because my body gave me nothing but pain and misery. Now within days of the infusion, I was walking with a level of discomfort which painkillers could now control. I was starting to enjoy life again.
Where do I go from here?
In the months that followed, I slowly weaned myself from NSAIDs (Nonsteroidal anti-inflammatory drugs) and other painkillers. But I still had a lot to do to pick up my life again. And new things to think about. If Ankylosing Spondylitis is incurable, what does that mean? It is a part of me that is here to stay, whether I want it or not. How will I manage? Am I frightened? Is there any good in having AS? How does it limit me? Or can I maybe do new things that I couldn’t do before the diagnosis? Do I want to change my life, or can I carry on as before?
Since my student days, I’d always loved mountains and am an enthusiastic climber. In summer I go on hikes, alpine or rock climbs. In winter, I love to walk up on skis and then ski down again. After my miraculous health improvement, I wanted most of all to spend time again in the Alps. For many months, I’d barely been able to walk. Now with the support of my physiotherapist, I made rapid progress. Soon I cautiously tried skiing and by Spring I’d made my first ski mountaineering tour. I noticed that I had more endurance and flexibility than I had for many years. Slowly the idea formed itself that I could test my limits and try to do things that hadn’t been possible for many years. Maybe I wanted to show my AS who was in charge of my life now. But above all I noticed that the more I moved my stiff joints, the better I felt.
The call of the hills
That’s how I got the idea to train and attempt a big mountain tour in the summer. I want to experience myself in the high Alps again, test my limits and find out what is possible for me with AS. In the next blogs I will tell the story of this project. It’s an exciting prospect for me, although it’s strange to feel that whether I reach those summits is no longer the most important thing. “Der Weg ist das Ziel” as they say here. The journey is the destination. Is that something that Ankylosing Spondylitis has taught me?