Category: Alpine sports | Living with Spondyloarthritis

Climbing the Eiger at 60?

“You’ve got to be kidding!” said my friend Jeannie about my plan to climb the Eiger over the Mittellegi ridge. Or maybe she thought that I was mad. After all, I have suffered from severe Spondyloarthritis and moderately severe Inflammatory Bowel Disease for decades.

However, the medication I take has a huge positive effect on my quality of life and makes such a mad plan thinkable. But there is a big difference between feeling ok, with bearable pain and being able to manage to get through the day, and feeling really, really fit and strong and confident. And that is the change in the last two years since I became aware of the power of “lifestyle medicine”.

Changes in my lifestyle have transformed my life and made it possible for me – a 60 year old woman with chronic illness – to climb the Eiger. I want to share my experience. Maybe my learnings will be useful for others. But please remember, I’m not a doctor and this is not medical advice. Everybody is different. Try things out, get professional support if you can, and observe carefully what works for you!

If you get to the end of this blog there is a slide show of the Eiger tour!

What is lifestyle medicine?

According the American College of Lifestyle Medicine, it uses evidence-based practice to help people adopt and sustain healthy behaviour that affects health and quality of life. Some Lifestyle health factors are now well-established: don’t smoke; keep your weight under control; exercise regularly. But the benefits of taking these lifestyle changes even further don’t seem to be recommended by most doctors. Perhaps they aren’t proven enough, or not well-known, or not believed in. For whatever reasons, these are all things that I have found out more or less for myself.

Lifestyle medicine focuses on sleep, nutrition, exercise, and stress reduction.

Sleep

Worries, overwork or medication have all affected my ability to get a good nights’ sleep in recent years. Many people know what a problem insomnia can be, and how lack of regular sleep can affect well-being, and how great it is to get a good night’s sleep. One source of support has been from Dr. Guy Meadows and his approach called ACT (Acceptance and Commitment Therapy). At the Sleep School he teaches how to overcome insomnia by observation and acceptance. It often works for me. Trying to control my fears and anxieties in this way matches my approach to Stress Reduction through meditation and mindfulness (see below).

However, the most important factor affecting my sleep is nutrition, which I will explain in more detail.

Nutrition

I’ve been watching carefully what I eat for some time, and have reported my experience in a previous blog called Am I really what I eat? I am still following the recommendations that I received from dieticians, and eat a Mediterranean diet with lots of fruit and vegetables. Now I can’t imagine eating any other way. It’s delicious!

But what about eating less or less often? My first thoughts and impressions about Fasting were A new F-word: FASTING – Love or Hate? Since starting interval fasting in August 2019, I believe that it has had a huge effect on my well-being!

There has been a lot written about diet as a factor in controlling inflammatory diseases, but what I have discovered in the last 6 months or so, is that it is just as important when I eat, as what I eat. Interval fasting has made a real difference to my sensitive gut, and I believe that reducing intestinal irritation, or even inflammation in my gut affects my whole well-being and may even have contributed to reducing inflammation in my back and joints. For over 6 months now, I generally eat my last meal by 6pm in the evening, and fast for 16 hours, meaning that I have a herb tea in the morning and then a delicious breakfast with coffee, fruit, whole grain muesli and yogurt sometime after 10am.

Dr Satchidananda Panda of the Salk Institute of Biological Sciences in California explores the circadian rhythm, and how this cycle of functions, which repeat themselves over 24 hours, affects our performance, mood and overall health. The best-known example is the sleep cycle. Dr. Panda believes that the benefit of sleep for the brain in the circadian rhythm is just the tip of the iceberg. Other organs have a circadian rhythm and also need time to rest and recuperate, such as the digestive system. The circadian clock may even mediate the immune system. He has tested the benefits of fasting extensively over the last 20 years and believes that every cell in our body has its own circadian clock. Every hormone, neurotransmitter, gene in our body has times when it functions best, and times when it needs to rest, repair, and reset. The circadian clock is not just linked to sleeping, but also to eating and exercising. So, it’s important not just to sleep at the right time, but also to eat at the right time.

His first results were with mice who were given a set “Western” diet. One group could only eat within a limited time window of 8 hours. The other could eat exactly the same amount of food, but without any time restrictions. After a few weeks, the mice who fasted 16 hours a day were much slimmer, more energetic and generally healthier than the mice who could eat or snack all day. In the last 5 years he has extended his research to thousands of human volunteers, who monitor their eating habits. The results indicate that similar results can improve the well-being of people. Apart from weight loss, improved mood, better sleeping, trial participants report other benefits such as reduced joint pain and inflammation. Dr. Panda explains his work in the BBC podcast Don’t tell me the score.

This seems entirely plausible to me, because the effect of interval fasting in the last months on my digestion and thus on my general well-being has been nothing less than dramatic. Through fasting I give my digestive system a period of down time when it doesn’t have to digest new food and can rest and repair. I can feel how my gut is more relaxed, how much better I can sleep, and how energised I am. For somebody who has suffered from a leaky gut and chronic inflammation for decades, this is a real gift for me.

If you understand the science (which sadly I am not trained in), then this work is summarized here: Mattson MP, Allison DB, Fontana L, Harvie M, Longo VD, Malaisse WJ, Mosley M, Notterpek L, Ravussin E, Scheer FA, Seyfried TN, Varady KA, Panda S. Meal frequency and timing in health and disease. Proc Natl Acad Sci U S A. 2014 Nov 25;111(47):16647-53. doi: 10.1073/pnas.1413965111. Epub 2014 Nov 17. PMID: 25404320; PMCID: PMC4250148.

Getting fit

To keep my spirits up during Lockdown I made a plan “5 tips to manage your day” which included daily exercise. I used an online fitness programme with a huge of variety of options from stretching and yoga through Pilates to PIIT (professional intensive interval training!). It was amazing how doing this every morning for several months made me fitter than I could ever have imagined, despite never going far from my own house, let alone to the mountains.

Stress Reduction

The key to stress reduction for me is a few minutes of mindfulness or meditation before starting the day. Collecting my thoughts and intentions by keeping a journal also helps. If you are interested in this topic, I reflected on Stress Reduction in a previous blog, the Lockdown.

Putting it all together to climb the Eiger!

These practices all help disease management and improve my well-being. It’s a gradual process. It has taken months for lifestyle changes to translate into improved well-being. Discoveries have been a process of trial and error. No clinician has advised me to adopt these practices. I have had to sort through the available material and decide myself what is quackery and what is responsible advice. If I’m not sure about a theory, I check if the author of recommendations has been willing to expose his or her ideas to scrutiny by publishing them. If there are no recent publications on PubMed, then I’m sceptical about whether the work is serious, and discard it.

There needs to be much more research to provide evidence-based, mainstream recommendations for the benefit of all patients. The Spondylitis Association of America recently published an excellent webinar on lifestyle healthcare, but otherwise it’s hard to find trustworthy information. I believe that if healthcare research were more centred on patients well-being, rather than being driven by commercial considerations or personal aspirations, these areas would be given much higher priority.

Above all, I believe that without all these lifestyle changes…. I never, ever, could have climbed the Eiger at the age of 60!

Here is the Eiger tour in pictures – enjoy!

The whole Eiger tour from the tiny hut on the right to the descent to the left
Ascent to the hut (1)
Ascent to the hut (2)
Arrival at Mittellegi hut
Sundown before the tour
Climbing at daybreak (Photo: J. Zaccaron)
Two more climbers were behind us
Wonderful rock
Warm sunshine at last
Grindelwald below to the right
The glaciers of the Aletsch UNESCO World Heritage Site below to the left
Climbing, climbing (J. Zaccaron)
Much narrower than that: the thinnest snow ridge ever (J. Zaccaron)
Summit after 4 hours!
South: Ewigschneefäld (Eternal snow field)
North: Looking towards Bern
East: Schreck- and Finsteraarhorn
West: Mönch, and Mont Blanc in the distance
Looking down
Walking down (J. Zaccaron)
Abseiling down
Sometimes going up again (J. Zaccaron)
The glacier is getting closer
Last steps to the hut
View of the ridge on the train ride home

When things don’t go according to plan – An April Fool’s Day Joke?

It’s time to come out with it! In January I broke my leg skiing. Now it’s April, and I STILL have a sort of plastic brace on my leg. I’ve barely been out of the house since the accident, except to go to the doctor’s or physiotherapy. But I’ve been to many places inside my head and – thank goodness – I’ve come back again. Life is still an adventure, even within the constraints of hoping around the house. But this is an adventure I could probably do without.

Skiing below the Eiger North Face — Below the Eiger North Face minutes before my accident

So here is the photo of me just before it happened. I’m looking at camera in my orange jacket and black helmet. To the left is the Eiger North Face. We are a group of friends planning to ski down a long descent just under that iconic mountain. We even had a wonderful local guide/teacher with us. Now, on Easter Sunday, it seems such a long time ago.

I was concentrating on practising my new improved short turns in deep snow, and didn’t notice a sort of drop to my right, someone came too close and to avoid a collusion I veered right and at the moment of falling into the drop, I couldn’t decide whether to brake and fall sideways or try to jump cleanly into it, so I fell straight into it and at that angle my touring ski bindings didn’t open.

Just the day before I’d seen Tom Cruise on the Graham Norton Show breaking his ankle and then running on. I was so impressed, but somehow something uncanny resonated with me that evening. So when a similar thing happened to me the next day, I was very aware of what was happening and knew instantly that I had broken my leg (tibia for people who know about bones), and that this was going to be a long story.

My friends helped me back to the main slope where a sort of motor bike on skis picked me up and took me to the Alpine train station called Scheidegg. I was put on a train back down to Grindelwald. During the train journey a middle-aged man, who was obviously used to telling people what to do, hit my leg with his ski stick and told me to take it off the seat. I breathed deeply and managed to remain courteous, but my explanation caused him to beat a rapid, wordless retreat to another seat. At Grindelwald the ambulance was not there as promised, so two station masters carried me to a taxi, which took me to a local doctor, who seems to earn a good living in winter x-raying people and encasing their injuries into plaster. The doctor also gave me a bottle of an opiate based pain-killer that I know from serious AS flare ups, so I chatted nonstop and cheerfully to the woman in our group who kindly drove me home. Goodness knows what I found to talk about!

At home a neighbour helped me set myself up with cushions in bed and an office chair to scoot around the kitchen. Over the next weeks my son visited regularly and helped with things like putting the rubbish out and filling the bird-feeders, neighbours shopped, and the Red Cross taxi service took me to the doctors. The ice and snow only melted in mid-March, so until very recently it was almost impossible to go out safely .

My well-being is very dependent on lots of movement and sport, and when after 10 days I was suffering from acute backache, I was terrified that a AS flare was starting. I started taking NSAIDS (Nonsteroidal anti-inflammatory drugs) regularly again, and they upset my stomach and made me feel sick. However, massage and physiotherapy managed to relieve the pain, so I could stop taking medication.

I got very lonely sometimes. Many friends visited and that saved me. But my daughter had only just moved out two weeks before and was abroad, so I was living alone for the first time in about 30 years. Morning meditation was difficult at first because of the pain, but I kept writing a journal and trying. That time in the morning is special, because it helps me to reframe negativity, create intentions and a purpose for the day, and live in the present moment. An example: on days when I saw nobody was to pose the question: “Am I lonely, or do I have the opportunity to enjoy a day of solitude?” Around me are so many people who are stressed out by the demands of their jobs and other people, and who would love a day by themselves.

One of my friends who told me that she’d never broke a bone, promptly broke her left leg skiing too. So we are thinking of forming a Facebook group. Anybody else?

Andrea and Judith broke their legs skiing — Andrea and me both broke our legs skiing in Winter 2018

Now the weather is a bit warmer and the snow has melted. I can put weight on my leg. Next week is another X-ray and if the bone has mended, I will loose the brace. Only downside is a sort of wandering Arthritis. Yesterday my right index finger and left elbow were swollen and painful. Today it’s my right knee and a bit in my right wrist. I’ve had this twice before – anybody else know it?

But otherwise life is looking up.

What keeps me healthy?

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.

View of poppies and Swiss mountains in summer

Fatigue, Friends and other F-words

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.

Judith Safford speaking at TEDx Zürich — Telling my story at TEDx Zürich

TEDx Zürich Judith Safford — Speaking 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.

Thanks for reading!

TEDx Zürich Judith Safford after the talk — Photo session with my kids after my TED talk

Back home

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.

Thunderstorm over the Swiss mountains — Thunderstorm is brewing up over the mountains

Autumn sunset in Switzerland near Bern — Sunset in Switzerland in autumn seen from my house

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.