The short answer to this question is “Yes, biologicals gave me back my life”. I’m lucky that I can give that answer, but that topic is for another blog.
But many people, including myself, who suffer from chronic disease feel that their medication is not the only important thing. Tragically, for others there is still no medication that really helps. So we search for other ways to find well-being. In my last blog I named four things that help me: diet, sport, managing stress, experiencing beauty and joy.
These are all important for happy living. But do I think that these things can make a difference to my AS? One thing is for sure, I would like to believe that I can influence my own health. I want to feel empowered and to control my disease.
Western medicine is responsible for the administration of medication. We have specialist doctors, who we hopefully trust and confide in. But, with health choices outside our medication they often can’t help us much, because they don’t know. The knowledge is simply not there, and good clinicians will not engage in unproven theories. It is understandable that a doctor who is trained in Western medicine will generally not recommend treatments, which are not scientifically proven to work. In fact, if a doctor believes that an alternative therapy is harmful, which some quack remedies undoubtably are, then she will try to stop her patient using them.
Most of us know lots of people who offer advice about “alternative treatments”, or eating differently, which sports are best, or how to reduce stress, and so on. And there is no shortage of stuff in the internet, about people who claim to have “cured” AS. We search through the jungle of literature, different alternative treatments, perhaps finding things that really seem to help, but maybe wasting precious energy and money with things that don’t work, or even fall for a Charlatan and make ourselves worse with something harmful.
At the end of the day most of us believe that we have found some things that work for us. One friend with AS drinks a whisky every evening. That’s his tonic. My belief is that I feel worse the next day, if I drink alcohol. But, I still drink a glass of wine occasionally!
If there is any serious research on the subject of whether an evening whisky helps reduce AS symptoms, it would probably say it doesn’t, or at best that the evidence is inconclusive. What makes many therapies work, is that we believe in them. I think this is true of many alternative treatments, such as homeopathic pills, which contain no measurable therapeutic substances. It is belief when patients react positively after receiving placebos in clinical trials. Indeed sometimes they even know they are receiving a placebo, and still feel better.
People suffering from serious or chronic disease need hope. They don’t want to feel helpless. They need to believe that they can influence their health.
Alternative therapies, which are not scientifically based, can give this hope. They can harness the power of belief in cure or at least improvement. They don’t have to keep within the boundaries of scientific knowledge, which may make believing in recovery harder. And many people who offer these treatments, do indeed have great powers to make people feel better: about themselves in their body, mind and soul.
A treatment that harnesses both the powers of belief and of science, and gives patients hope would be the best therapy in my opinion. Until the biologicals worked I had no hope; in a state of despair I could not mobilize any healing powers. Shamans give belief and hope, and there are many documented examples of how they can work wonders. But science is not the focus of shamanic healers, and when it comes to HIV/Aids for example, anti Retroviral therapy prevents a lingering death, and nothing else reliably does.
Can medical doctors also harness the power of belief and hope, without losing the science? I believe that they can and should, but that needs a view of the patient as a whole person in a system and in her environment, and not letting the insights of technology and science reduce a patient to a sick organ. Only a person seen in their entirety will respond to hope.
Finally, medicine starts with scientific health research, so that also needs to broaden its perspective. One way in which that is happening will be the subject of my next blog.
And by the way, my TEDx Talk is also finally online. Please do watch it and pass it on to anybody who might be interested.
Thanks to Dr. Jody Staehlin for feedbacks and helping me to clarify my thoughts… and I would welcome your comments on what I’ve written, please feel free to start a conversation about these subjects close to our hearts.
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.
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.
Reflections on life since the mountain tour to Monte Rosa. The final day was so long: we’d started well before dawn and arrived at the Gornergrat railway to head home in the early evening. But surprisingly, the first three days after the tour I was still sort of high, and full of energy. Then on Monday morning – surprise, surprise – the tiredness hit me, and I had terribly aching joints and cramps, which even woke me in the night for about a week. Probably I should have kept up some sport to let my muscles relax slowly, but I didn’t know that, and enjoyed being really lazy.
The most amazing thing about the tour was that after it I could bend and move so easily and had no pain, not even in the lower back, where I usually have a small nagging ache all the time. The backache started again exactly two weeks after the tour. So in all I had about 4 weeks without pain. Anybody who has experienced chronic pain can imagine how amazing that was for me. The best holiday you can imagine.
Actually I think that experience is rather interesting. Usually people with rheumatic disorders are told to exercise – yes! yes! but only moderately. I imagine that is good advice if your arthritis is degenerative and the bones in the joints are being worn away by movement, but my arthritis is inflammatory. It seems that my mountain tour of 16 4,000m summits in 5 days, which was quite excessive exercise, did me a lot of good, and during this time my symptoms disappeared completely. Maybe that is something for health care specialists to think about.
I work for the Institute of Rheumatology Research, which funds research to look for better treatments. In that context I was talking to somebody who suffers terribly from degenerative arthritis. X-rays have revealed that at least one or possibly three of the discs of this man’s spine are completely worn away. That is very severe disc degeneration, and causes terrible, unremitting pain. At present there is no treatment for this man, and thus no perspective that his pain will lessen. Severe pain itself is terribly difficult to treat effectively. Some pain-killers, for instance those containing opiates, are very strong, but they have side effects. If they are strong enough to work, they may make people not just oblivious to pain, but also to really everything else around them. At least, that’s what I felt happened to me. That’s not life. Chronic pain allows people to exist – you don’t die of it. But you don’t live either.
People talk about fighting pain, but I’m not sure that is a good approach. Because you can’t ultimately win. And as long as you are engaged in a fight, the pain is exercising power over you. I tried to take the attitude of accepting the pain, so that it lost its power over me. Sometimes it worked, and those were moments of peace for me.
The weeks since the tour have been full professionally and this blog was picked up by a newspaper and other media, which made me very happy, but kept me busy. That’s why I have not written a blog for ages. Very sorry about that.
Apart from the press and answering enquiries about the tour, I lived quietly, spending a lot of time at home. I enjoy the familiarity of my garden and the house I’ve lived in for 20 years. Remembering the time when I could hardly walk, let alone go on trips to the mountains, I was always aware that the beauty of nature is always all around me. Flowers and even leaves are incredibly perfect, beautiful things. So I don’t need to ascend high mountains to see the splendour of nature, I can just look out of the window. One of the first evenings when I got home after the tour there was a thunderstorm brewing up over the Gantrisch mountains to the south. A huge cloud was towering up over the hills behind the house. It was filled with the light of the setting sun. Later, lightening flashes illuminated the cloud from the inside.
And now in October, we see the red, lilac and yellow of autumn colours. They are not just in the leaves, but in the stunning sunsets as well. Looking north over the “Mittelland” towards the Jura mountains at this time of year we are regularly treated to the most beautiful evening light shows. I took this picture in early October and would like to share it with you.
Until next time, enjoy the autumn. It’s hard that summer is over, but there is comfort in the splendour of autumn colours.
Only 18 months after requiring a wheelchair at the airport, I have accomplished my dream of climbing several of Switzerland’s highest peaks – 16 in all – in only five days.
I was diagnosed with Ankylosing Spondylitis (AS) two years ago, and wrote about coming to terms with the diagnosis in a first post, and in a second, the treatment that allowed me to resume my passion for mountains. Now, I will describe my five days on top of Europe in the Alps of Monte Rosa.
I looked around me. Dazed and disbelieving I saw a sea of fluffy clouds over the Po plain of Italy to the south. It was like being in a plane, except that the landscape stayed still and the cold wind stung my face.
In all other directions, occasional clouds were scattered amid the peaks below me. Between them I could just see down to green valleys, far below. To the north and east huge glaciers wound magnificently down towards the lone summit of Matterhorn, which seem to stretch elegantly but somehow coquettish to the sky. That icon of the Alps was below where I was standing now. Left of the Matterhorn in the distance stood the great massif of Mont Blanc, the only point in western Europe higher than where I was now.
I was standing on the Dufourspitze, also known as Monte Rosa, 4,634m above sea level. It was the 16th 4,000m peak that I had climbed in five days. I had achieved everything that I had wanted to do. The toil of the last months of preparation had paid off. The fear and doubts, the sleepless nights listening to my heart thumping, all disappeared in the sublime beauty of that moment. I turned to my rope partners and we hugged and congratulated each other, I sobbed tears of gratitude and relief.
We took in the scenery for a few more minutes, took some photos, drank a sip of hot tea from our thermos flasks, forced down some dried fruits or chocolate and then our guide, Roman, said, “Let’s go. Concentrate.” Indeed, we had several hours to go before the tour was safely completed. As everyone who has climbed trees as a child knows, going down is usually more difficult than climbing up.
Nothing but a step
On the summit of Monte Rosa there is plaque commemorating the first ascent in 1855 with a quote by Seneca, “What you think to be the peak is nothing but a step.” Taking ‘nothing but a step’ had been my driving force during the last days. The tours had been long – up to 12 hours – and if a particular slope had seemed endless and I had felt that there was no way that I could muster the strength to continue, I just concentrated on taking a step. Eventually one of those steps was indeed the summit. Indeed, this idea of taking one step at a time has been an important element of managing my life generally since the diagnosis of Ankylosing Spondylitis.
Roman’s frequent reminder to concentrate was also about taking steps. Many of the peaks we had ascended were along thin ridges, where steep slopes fall away for perhaps 1,000m on both sides. A fall would mean almost certain death. So, the only safe way to proceed is to walk exactly on the top of the ridge, so that if someone did stumble and fall on one side, another rope partner can jump in the other direction down the other and thus break the fall. Naturally, this is only a measure of last resort.
The best way forward is to concentrate all your senses on every single step, take even, perfectly placed paces, feel how your rope partners are moving and coordinate your movements with them.
On day two we crossed the Lyskamm, one of the classical traverses in the Alps. The West peak is 4491m ascending slightly to the East peak at 4527m. It is an exposed ridge stretching for about 2km with stunning views, as if suspended in space over its north face. I love the awareness that such situations create. I feel alive and confident in my abilities, knowing that I am no more likely to stumble as I would when going downstairs at home.
Only on the last day, very early in the morning on an icy traverse between Zumsteinspitze (4452m, 14th peak) and Dunantspitze (4632m, 15th peak) did I become fearful and start thinking about my family. I immediately had to remind myself, that this did not serve my purpose, and I must focus entirely on the task at hand – making a safe step.
Why I love mountaineering
These mental demands are part of the fascination of mountaineering for me. Climbers require very balanced skills. They need finely honed techniques, physical strength and endurance and a strong mental focus. The importance of the overall mental challenge should not be underestimated.
Our group of four was led by two mountain guides, so that the crucial elements of risk management, planning and decision making were delegated to experienced professionals. Nevertheless, even with this support the ability to overcome fear, to concentrate completely on the task at hand and master the challenges presented is essential to success.
During the tour, I experienced many moments of doubt. I was surprised and worried about how tired I was already after day two. I was very nervous of the technical challenges of the Lyskamm on day three, and the long fourth day which included no fewer than seven 4,000m peaks. On that morning, I felt too tired to eat much and my legs were like lead after only an hour or two of walking. Luckily with the guides’ support, some rye bread, dried meat and cheese topped up with tea helped stabilise my condition. I felt much better after a couple of hours. But my doubts about whether I could complete the tour continued even into day five.
The mountain hut experience
We spent the night of day four on the Signalkuppe at 4554m. The Italian Alpine Club (CAI) has built a mountain hut right on top of the summit, called La Capanna Regina Margherita. Even if you are well acclimatised, that is a very high place to sleep. At this altitude, the oxygen content of the air is almost half what it is a sea level. The body cannot recuperate as it would be able to at lower altitude.
Needless to say, mountain huts are not typically very comfortable places. Beds are in tightly packed dormitories. You can purchase a limited selection of food and drinks. Accommodation includes a set evening meal and breakfast offered between about 4 and 8am, depending on when your planned tour starts. Water is usually only available for washing in cold and limited quantities.
The Capanna Regina Margherita has no water supply at all. If you think about it, it’s not surprising, because where would you get water on a mountain summit? The toilet is a small tin clad room with a hole in the floor. There is hospital antiseptic concentrate to clean your hands.
All in all, I didn’t feel much like eating, but we sat down to the most stunning meal that I’ve eaten for a long time: a carrot and ginger soup garnished with a deep fried, crispy topping, then a salad of different tomatoes and burrata, then two sorts of pasta with aubergines and sweet red pepper. The main dish was roast lamb infused with garlic and copious quantities of rosemary on a bed of crisp, but perfectly cooked cabbage, accompanied by Italian fried potatoes. Oh, and I almost forgot the beetroot salad! For dessert there were shortcake biscuits, little black and white chocolate coins and water melon. It was probably one of the most wonderful and surreal experiences of my life. I believe that it helped me to manage the final day!
As I write this, I am still somehow in a trance. I haven’t really understood what happened. I can’t really believe that I managed to climb 16 4,000m peaks in five days, when a little over 18 months ago, I could barely walk.
What does this success mean to me?
People have always suffered from rheumatic diseases. My mountaineering success is mainly due to an effective combination of medications to treat my AS. I am incredibly grateful for this treatment. Through my contacts both through the Swiss AS Association and my family, I know that many sufferers do not find a way to handle the disease, which makes a normal life possible. I am very lucky and privileged. However, I live on a knife’s edge, always attentive to aches and pains, knowing that there is not yet a cure for AS and therefore my situation could change. For many people for whom effective treatment has not yet been found, life is just about carrying on and making the best of it. I know this myself and often reflect on the years before diagnosis, where I spent so much energy just trying to get through the day.
What does my climbing achievement mean to me? It closes the dark times of unrelenting pain and exhaustion as AS was active. The memories were still very present, but now I feel that I can move on. It has shown that with this treatment I can do things that I could not do for a least the last 20 years. It shows that some effective medical treatments are now available.
I’m still very tired, but already reflecting on what mountaineering projects I could do next year. I’ve also noticed that in the last couple of weeks I’ve been free of back pain. Exercise seems to really be important for me. Ideally, I would do hours of sport every day instead of sitting (or standing) at a desk, and then I might not have backache any more. Finally, I now have a job at the Institute of Arthritis Research where I am responsible for fundraising for more research. This climb gives me a strong sense of purpose to support efforts to find better treatments and cures for many more people. That is my next dream. It’s a much bigger project than climbing mountains, but from AS and this climbing trip I’ve learnt to take life one step at a time.
A plea for more Arthritis research
The combination of two substances that make up my treatment is not yet recommended by ASAS (Assessment of SpondyloArthritis International Society) or EULAR (European League Against Rheumatism), because there has not been sufficient evidence presented to show that the treatment works.
Secondly, the high costs and unknown long-term risks of treatment means that the treatment is not freely prescribed. Finally, only a small proportion of all arthritis patients are helped by the medication I receive – for most others there are only symptomatic therapies, such as anti-inflammatories and other painkillers or joint replacement. Musculoskeletal disorders is the disease group responsible for the highest combined direct and indirect health costs (more than CHF 20 bn per year) of all non-communicable diseases in Switzerland. I wonder why arthritis research receives so little attention?
My climbing achievement despite AS shows that medical treatments are now available to help people affected by arthritis to live full lives. But at present only a privileged few are benefiting. More research is needed to relieve suffering, to prevent and ultimately to cure.
The final tour
Day 1. Roccia Nera 4075m
Day 2. Pollux 4092m and Castor 4223m
Day 3. Felikhorn 4087m, Lyskamm traverse over 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, Dunantspitze 4632m, Dufourspitze 4634m
I couldn’t have done this alone. My gratitude goes out to all the staff at the huts, including, of course, the chef of the Cabanna Regina Margherita. Our guides, Roman and Christian, from Bergpunkt AG, gave us a perfect combination of professionality, care and friendship. My rope partners, Rick, David and Oliver were the best companions I could imagine on this journey. Lukas and Melina supported and believed in me, as did many friends and my family both in Switzerland and the UK.
The photos are by Roman Hinder, Bergpunkt AG (1,3), David Isliker (4,5,6), and myself (2)