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.

Do I believe that I can be healthy?

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.

Healthy Vegetables alexandr-podvalny-unsplash
Healthy vegetables

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!

Not so healthy processed vegetables! christin-hume-unsplash
Not so healthy processed vegetables!

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.

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
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.