In Switzerland we believe that foxes are clever. Near the village where I live there is a family of foxes living on the border between the woods and a corn field, and in Spring the young foxes come out and play in the evenings. Last year I managed to get a picture, which I’d like to use as my feature picture for this first blog about being clever and keeping healthy.
Being and keeping healthy is the most precious, valuable thing that I can think of. But let’s be honest – a lot about keeping healthy is luck, or maybe it’s more scientific to say that it’s about genes. So does it pay off to live healthily? I see a lot people around me who – how can I put it? – seem to ask a lot of their bodies. But they still seem to be very bright and cheerful, hold down a job and earn enough, have an intact family – in all, manage their lives quite successfully.
Much of my adult life I didn’t feel very well, I was exhausted, or had pains. Despite living my life a in very “healthy” way, I was often ill. Shortly before I started on the treatment with TNF alpha blockers in 2015, I couldn’t “tick off” any of the above life successes. I wonder what my life would have looked like if I’d lived like Winston Churchill, for instance? He began the day with whisky or brandy, and ended it with the same. In between he was very fond of Champagne and of course “Churchill Martinis” which is essentially a glass of gin. He liked good and large quantities of food as well, and is estimated to have smoked or chewed his way through 200’000 cigars. He didn’t think much of sport either, and lived to be 91. I would feel just awful, if I’d lived like that. How did he do it? Genes were probably pretty important.
But if your genes have passed you a disease like AS, or any other chronic ailment. It’s probably a good idea to live as healthily as possible. It should improve the quality of life, as long as you have it, and maybe give you some extra time as well. I believe that my health depends on the medication I take, on what I do for my body, on what I eat and drink, how well I can keep stress out of my life, and how much beauty and joy I manage to keep in. That’s 5 things. In the next blogs I will address each of these five factors and reflect on how I bring them into my life. In a sixth blog I will make a guess about how much each factor contributes to my total well-being.
I’m looking forward to it, and hope to learn from the experience, and maybe give others some ideas as well.
It’s snowing outside, but Spring will come again. I leave you with a picture of the woods and the fields where the clever foxes play.
It’s been so long since my last blog. What happened to my intention to write every two weeks? What’s being going on? Well, I’ve been busy – read on and find out! – and if I’ve not been busy, I’ve been exhausted and dragging myself from one task to the next.
Those who suffer from an autoimmune disease know about Fatigue. It’s one of the first symptoms, and a common one, whether you have rheumatoid arthritis, diabetes, psoriasis, alopecia, lupus, thyroid disease, Addison’s disease, pernicious anaemia, celiac disease, multiple sclerosis, crohns disease, or ankylosing spondylitis as I do. The body is spending lots of energy fighting itself. That makes you tired. It’s a tiredness that is not fully relieved by sleep – at least that is my experience – you just feel completed wasted during such periods. Apart from slowing down, being careful what I eat, being nice and understanding and compassionate to myself, trying to reduce stress, I don’t really know what better I can do. Depending on the disease, you may also be in constant pain. In fact, many autoimmune diseases cause joint or muscle pain, not just rheumatic ones. Other general symptoms, which I have all experienced, are general muscle weakness, rashes, low-grade fever, trouble concentrating, or weight loss.
The doctor that diagnosed osteopenia (a kind of halfway house to osteoporosis) when I was 45 years old, felt that there was something not right about my health, but did not know what. There aren’t doctors called autoimmunologists, who specialise in autoimmune diseases. Depending on your symptoms you might first go to an internist or rheumatologist or endocrinologist or ophthalmologist or dermatologist. I went to quite of a few of these specialists, and also to an orthopaedist during the 30 years until I got a diagnosis, but nobody was able to join the dots. In medical research the link between different autoimmune diseases is well recognised and diseases are often approached as a common group, but no clinical practitioner was able to make the link between my various complaints. I’m not a victim of a sequence of rare errors. My case is typical. I know of many other sufferers of ankylosing spondylitis, who were not diagnosed for years, if not decades.
It’s so good to have Friends, especially those dear ones, who I can tell when I’m exhausted and hurting; and who can forgive me and still love me, if I’m grumpy, bad tempered, and a bit down. My advice, which I try to follow myself: if you have an autoimmune disease and Friends, join the dots. Let them know how you are feeling, when things get tough, because we often look better than we feel. That’s what Friends are for.
But enough complaining. Why was I tired? Part of the reason is that this blog and the other media that it attracted, also led to the opportunity to talk about my mountain tour and the need for more Arthritis research at TEDx Zürich. So I had this amazing opportunity to tell the world of my mission to fundraise for more Arthritis research. I worked for weeks on the content, practised every sentence of the presentation for hours, learned my talk off by heart, which took forever. I gave my talk to Friends, in fact anybody willing to listen – and I owe a huge thank you to all those who supported me.
Telling my story at TEDx ZürichSpeaking from my heart
On the day, things finally came together. I seems like the first time that I got the talk right and didn’t forget anything, was when it really mattered. It was a wonderful experience, especially after I’d survived the nervousness before. In all, it was Fantastic.
At the party afterwards, I celebrated with my kids – that’s them in the picture below – and met many really kind and inspiring and interesting people. The TED talk will go online in a couple months. Until then, I’m able to relax, recuperate and write another blog.
With the help of a new medical treatment, my health had improved beyond recognition. However, I did feel that this drug regime was not the whole solution, because I still had aches in my back and other joints sometimes, which showed that AS hadn’t been stopped entirely. When I took up sport again, it realised that the more I could exercise my body, the less pain I had. I want so much to live again without pain. I learnt of patients for whom the medication stopped working after a while. Maybe the long-term outlook would be better, if I took lots of exercise.
At the same time, being too preoccupied with keeping healthy might let the disease determine too much in my life. I still find it difficult to find the balance between ignoring the diagnosis and just enjoying life, and respecting it as a part of me and giving it space. I’d had back pain and other health problems for such a long time, but no diagnosis. It takes a while to realise that I’m not just neurotic and imagining it. I would plan carefully with respect towards my body.
Mountaineering preparations
Young ibex get attracted to a salt lick near the mountain hut
In late mountain Springtime (June), the climbing and hiking season had begun, so out I went. That helped me to develop basic fitness. I saw beautiful landscapes, birds and animals. With friends from the Swiss Alpine Club (SAC) we walked in the Bächlital in the Grimsel area, or to the Grand Muveran on the border between Vaud and the Valais.
View across the Valais in Switzerland to the Grand Combin
In addition, my physiotherapist recommended some specific training the gym and I enrolled for a 3-month course at a local fitness centre. So now I am lifting weights and doing some funny exercises on very strange looking machines. It is surprising how much difference those rather comical exercises make. If they didn’t make a difference, I probably would stop, because I find them rather monotonous and it needs discipline to do them regularly. I really admire the people who go regularly to Fitness centres!
The imposing form of the Matterhorn
But what is the point of all this? What mountain tour am I going to attempt? The first mountain that I thought of was the Matterhorn. Isn’t it the icon of Switzerland, if not of mountains worldwide? That would be cool! I’ve never climbed the Matterhorn. But I go to the mountains is to be in wild nature and to find quietness and solitude. That’s not so easy on the Matterhorn in August. Every fine day there will be about 120 people queuing up to go up the popular Hornli ridge to the summit.
Finally, I decided on a 5-day tour in the Monte Rosa, a mountain massif located between Valais and the Piedmont and Aosta Valley. It includes some the wildest glaciers in Europe, the highest mountain in Switzerland (Dufourspitze) and the twin mountains Castor and Pollux, which I always wanted to climb because my zodiac sign is Gemini.
A local mountaineering tour company offer a very challenging 5-day program staying in mountain huts in Switzerland and Italy and including 15 4’000m peaks.
Day 1. Roccia Nera 4057m
Day 2. Pollux 4092m and Castor 4223m
Day 3. Lyskamm traverse over the the Westgipfel 4479m and Ostgipfel 4527m
Day 4. Punta Giordani 4046m, Piramide Vincent 4215m, Balmenhorn 4167m, Corno Nero 4321m, Ludwigshöhe 4341m, Parrotspitze 4432m, Signalkuppe 4554m
Day 5. Zumsteinspitze 4563 m, Dufourspitze 4634m and Nordend 4609m
That is quite a daunting project.
But I keep reminding myself: “the journey is the destination”.
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 Spondyloarthritis 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.
Equestrian contest in Southern Germany
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.
Diagnosis
Now fast forward 31 years to the day I got the diagnosis at the age of 55 that I had axial Spondyloarthritis (AS), an incurable rheumatic disease. 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, Spondyloarthritis 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 Spondyloarthritis 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.
Happy Christmas!
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.
First days after treatment
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 Spondyloarthritis 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 Spondyloarthritis has taught me?
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.
