Category: Well-being | Page 2 | Living with Spondyloarthritis

Coronavirus: 5 tips to manage your day

The news gets grimmer every day. Many of us are living in Lockdown. We are frightened and understandably so. The Coronavirus disease is causing a pandemic which is shaking our beliefs, culture, daily habits and the very essence of our lives. These are life changing events for us all. Whatever this leads to, whatever we suffer, or learn, I suspect life will never quite be the same again.

Will I fall into a chasm of fear, helplessness and despair? I’ve been there, and that taught me that we have choices and it’s never as bad as our fantasy and creative mind can allow it to be. Rather use that creativity to generate hope and optimism, and on a strictly practical level – make a plan to keep myself afloat.

5 things to manage Corona times

What follows is my list of things to do every day. If I keep to them, I will be OK. It helped me to visualise the plan. My artistic efforts are pictured above!

Maybe a plan like this might be helpful to you? Other ideas are around. For instance, the Unicef Executive Director, Henrietta H. Fore has been broadcasting a Video diary from her home office. In the broadcast on Day 4, she recommends to make a Well-being plan.
(If it’s relevant to you, Unicef’s advice about looking after children and teens during the pandemic might also be worth reading.)

So here is my personal list of what I need everyday for well-being.

1. Move your body!

Movement and sport is absolutely essential to me. It’s the way to keep Spondyloarthritis at bay. If I move, I’m usually pain free. If I don’t, the pain comes back within a few days. So how to replace the weekend mountain trips, the back classes, training gym, climbing gym, physiotherapy and the fitness centre which keep me moving?

As long as I’m allowed to, I will go running in the hills behind my house early in the morning. I meet nobody and feel safe. Or some days, I practice Rickie Moore’s wonderful yoga for inner peace, which takes an hour. I can also go walking. The incredible value of walking was made clear to me by the neurologist Prof. Shane O’Mara on a BBC podcast called Don’t tell me the score. In summary, walking benefits our muscles and posture, helps to protect and repair organs, aids digestion and can even turn back the aging of our brains. Moreover, it encourages us to think more creatively, helps our mood to improve and our stress levels to fall. I’ve tried to follow Prof. O’Mara’s recommendations on walking, and I really think that they work. A quick summary with 8 reasons why walking is so good for you is here.

2. Look after stress levels by meditating

Sometimes I get really stressed out, which leads me to make mistakes and misjudge situations. I can even feel my heartbeat accelerating, or my voice getting tense. To relax again, I need to get myself into the here and now. I’m never tense if I’m in the present moment. It’s reflecting on some event in the past, or worrying about the future that makes me stressed.

Climbing, running, swimming, or other physical activities all help to concentrate the mind, but meditation has a special healing quality. Sometimes I can sit on my cushion and physically feel the tension falling away from my body. There are so many schools and techniques to meditate. If you are curious, it’s all on the internet.

Mindfulness is also a very helpful tool to reduce stress. It’s not the same as meditation. I like this simple way of distinguishing these two practices:

Mindfulness is the awareness of “some-thing,” while meditation is the awareness of “no-thing.” (here’s the reference)

Mindfulness is being aware of the present moment. It’s noticing and paying attention to thoughts, feelings, behavior, and everything else, but without making judgements. Jon Kabat-Zinn founded the Mindfulness-Based Stress Reduction (MBSR) program at the University of Massachusetts to treat the chronically ill.

Personally, I prefer meditation. It’s the fascination of trying to get to a completely different level of consciousness. Albert Einstein famously said, “We cannot solve our problems with the same thinking we used when we created them.” Meditation often enables me to reframe problems and find solutions.

There are masses of information on the internet. I find Andy Puddicombe a fascinating person. He co-founded the App called Headspace. I don’t know it, although it’s probably the most popular one. He has worked hard to make Meditation and Mindfulness more accessible and relevant in today’s world.

I’ve been meditating for about 8 years now. Sometimes only for 10 minutes, but every day is the key. I still get distracted a lot, and this is quite normal, unless you are really, really experienced. My practice has not (yet) enabled me to switch into altered consciousness every time I sit on my cushion. My practice is learning to catch myself drifting off into other thoughts and bring myself back to quietness. This does help with problem-solving and calms my mind too. I also enjoy meditations that help develop a certain state of mind, such as Loving Kindness, or Compassion. There is no wrong and right way to meditate!

3. Get some overdue work done

Lots of people feel this way about the Lockdown. They can finally get some work done, which they’ve wanted to do for ages, or read some of those books stacked on the bedside table…. I am looking forward to blogging more and am launching new professional activities as a patient representative/advocate in medical research. Maybe you have other projects, or can contact old friends again.

4. NO TV before bedtime!

We all know that we shouldn’t be online in the evening, let alone watching the news. A few evenings ago there was an evening report from an intensive care unit in Bergamo in Italy, a city 30km from the Swiss border, where an old friend lives, who had a liver transplant. I was stupid enough to watch it – woke at 3am, feeling sick, my head spinning. I felt feverish but was too dizzy to move. When I did manage to measure my temperature, I had slightly over 35C! No fever whatsoever!

In the evenings I am generally to tired to read, so I need to do something very passive. That’s why TV is such a temptation. My solution was to get out some of those old coffee table books with stunning photos about beautiful places in the world and look at them again. Wonderful! I haven’t looked at such books for years!

5. Remember the power of Love and Compassion

It’s important to me to feel connected with others and to feel the power of Love and Compassion. A marvellous doctor called Sir Harry Burns, who I have been so privileged to work with, emphasised the need for Love and Compassion in health care in a recent talk. He was referring to the care of others, but it’s also important when caring for ourselves. (Sir Harry has also done a great TED talk on What causes Wellness).

I’ve heard that Neuroscience says that it is better for your health and well-being to give than to receive. I don’t know if there is really any evidence-based research on this, but I can believe it. Helping each other, staying in touch, supporting each other, will make a big difference to how we overcome this crisis. And I am sure that despite a bit of hamster shopping, people will rise to the occasion. Just knowing this, gives me strength and hope for the days and weeks to come.

Take care, stay at home, stay healthy, and stay in the space of Love and Compassion.

Another Patient Journey: 2019 was a good year

Picking up the story from my last blog Was 2019 really that bad? my doctors advised that I should stop the TNF blocker drugs, that had enabled me to live a normal life for the past three years, before undergoing cancer surgery. That made sense. These drugs work by dampening the immune system. I could understand that my immune system should be as strong as possible for the operation, so I would have to go off them…. for a while.

However, after the operation I was told that I wasn’t supposed to stop the TNF blockers just for the operation. I was supposed to stop them forever, or at least for a few years, because TNF blockers might enable the cancer to come back. TNF = Tumour Necrosis Factor – the blockers stop these messengers in the immune system, which are thought to play a role in suppressing cancer.

My doctors all seemed to be saying “stop TNF blockers”. I couldn’t believe it. I read the patient information for my medication, and it said the same thing: Do not take this medication if you have been diagnosed with cancer.

I was absolutely devasted.

Until I spoke to one doctor, by whom I felt understood, and who said, “What do you want? What is Quality of Life for you?” I thought of my trips to the mountains, of laughing with family and friends and all the love of life that had come back to me with TNF blockers. After the trauma of diagnosis and the surgery, I felt so confused and helpless. I needed that input to start thinking for myself.

I posted a question on the Facebook AS patients’ page of which I am a member. One woman commented that she was in cancer treatment and had to change medication. She wrote, “I got my life back with humira [brand name of a TNF blocker drug] and now it’s the 💩💩💩.”

Then I looked for relevant research results, my oncologist sent me a paper, I opened the discussion with different experts, and discovered …that there was no relevant, reliable data to guide my decision. The risk of cancer caused by TNF blockers in my situation is theoretical, because it would not be admissible to run clinical trials with patients to find out. There is also no scientific literature showing that I will reduce the risk by stopping TNF blockers now.

Living with chronic disease is life on a knife-edge

With my condition I live on a knife-edge, and I want to stay on it, living a normal life. This is me, on a mountain called the Lyskamm. It’s a knife-edge ridge, about 5 km long, and the idea is to stay on it, to walk right over it. I walked over it on my mountain tour of August 2017. I tell that story in my TED talk or my blog 16 x 4,000m summits in 5 days.

Traverse of Lyskamm, 16 4,000m peaks in 5 days — Me standing on the knife edge of the Lyskamm on the border of Switzerland and Italy

When you stand on that ridge on the right is Italy, and a drop of 1000 m. On the left is Switzerland, and a drop of 1000 m.

Italy is happy go lucky, living for the now. “La Dolce Vita”. For me it stands for continuing TNF blockers. But maybe I will fall to my death, because taking the drugs might allow the cancer to come back!

Switzerland is the sensible place to be. If in doubt, choose the conservative option, wait and see. It stands for stopping TNF blockers. But maybe I will fall to my death because if I stop taking the drugs, the autoinflammatory conditions will probably flare up again! I had experienced this a year before, when the medication stopped working, see The Luxury of Despair. Furthermore, it is known that chronic inflammation increases cancer risk, as does a lack of regular exercise.

How would you choose? ……Which way would you lean on that ridge?

“What is Quality of Life for you?”

The words of that doctor were my guiding light. She saw my integral, holistic needs beyond the inflexible, “one size fits all” recommendations of a health system that generally places mortality and prolonging life above quality. In Switzerland I can choose my doctors and over the years I have sought out dedicated carers who are attentive to my experiences and needs and do everything in their power to help me.

I want doctors to give me the facts, listen to me, guide me, but recognise that this is my patient journey.

I could explain my perspective to my doctors and win their understanding, respect and agreement. I decided to continue TNF blockers and live as healthy and strong a life as I can, even if my decision might be increasing the risk of cancer. Life feels good right now, and that’s all I need.

A new F-word: FASTING – Love or Hate?

Next week is Ash Wednesday when the Christian fasting period called Lent begins. I’ve never fasted. It always seemed rather uncomfortable and difficult. Until now I couldn‘t see any benefit and feel that managing AS I have enough to do.

The more I read and try things out, the more convinced I am that diet is important to my condition. We know that AS is about 95% hereditary, so I couldn’t have stopped it breaking out. But what I eat can maybe influence the progress of the disease, and most importantly how I feel on a day to day basis. A good diet should also help to keep other health issues at bay, which result from chronic inflammation.

But not eating at all?! NOT TOO SURE THAT I WANT TO STOP EATING ENTIRELY!

Beautiful organic lettuce — I love my lettuces – this one was grown organically in my garden!

So what is fasting all about?! HERE IS WHAT I FOUND OUT

The first thing I found out is that I could fast in many different ways. I could not eat for just 8-12 hours, which is called “interval fasting” and seems the same as eating early in the evening; or fast for perhaps as long as 3 weeks. I could eat nothing at all, or just limit my diet, for instance to juices or fruits.

The second thing that I realised is that not only Christians of practically all denominations, but also every other leading wisdom tradition, such as Hindus, Muslims, Buddhists, Jews, observe fasting at certain ceremonies or times of the year. These are traditions which have held for thousands of years, and are based on collective and accumulated knowledge. Such customs are a spiritual practice but also often developed for practical reasons. In Western Europe before global trade and industrial greenhouses, food was getting scarse by Spring, so there were good reasons to eat less! But maybe there were health reasons for these practices too, which could not be scientifically proved, but were observed. The ancient Greeks believed in fasting. Indeed Hippocrates is quoted as saying: “Instead of using medicine, rather, fast a day.”

The third thing I found is that Western medicine does not advise fasting, particularly for people who suffer from serious chronic disease. The fasting article in Wikipedia discusses fasting in religious practice at great length. Medical applications are referred to only with reference to fasting before surgery or medical tests.

Alternative medicine gets a one liner in Wikipedia: “Although practitioners of alternative medicine promote “cleansing the body” through fasting, the concept is quackery with no scientific basis for its rationale or efficacy.”

But the fourth thing is that I found an article on the effects of fasting on rheumatoid arthritis in the renowned medical journal “The Lancet” in 1991. Its conclusion is: “Fasting is an effective treatment for rheumatoid arthritis, but most patients relapse on reintroduction of food.” But then, after 7-10 days fasting, patients were put on gluten-free vegan and then lactovegetarian diets. A control group ate an ordinary diet. The final result: “The benefits in the diet group were still present after one year, and evaluation of the whole course showed significant advantages for the diet group in all measured indices. This dietary regimen seems to be a useful supplement to conventional medical treatment of rheumatoid arthritis.”

Has this research on rheumatoid arthritis (RA) been followed up? Yes, a bit! I found an interesting article from 2014 called “Fasting: Molecular Mechanisms and Clinical Applications“, which states that the positive effects of fasting on RA have been supported by four differently controlled studies. The authors write: “..for many [RA] patients able and willing to endure long-term fasting and to permanently modify their diet, fasting cycles would have the potential not only to augment but also to replace existing medical treatments.”

Is fasting really “quackery” as Wikipedia claims, or has not enough research been done to establish its value? And what about the effects on AS?

My fifth thought comes from new knowledge gained in basic medical research. A process which might have played a key role in the positive effects of fasting for patients with rheumatoid arthritis is Autophagy. This is a sort of automatic biological cleaning programme. The removal of waste products and old debris is essential for the cellular and organic fitness of any living organism. Autophagy describes a fundamental process to degrade and recycle old cells, and then use them for new purposes or as a source of energy. Yoshinori Ohsumi who discovered the processes and elucidated the basic mechanisms of how autophagy works, was awarded the Nobel Prize for Medicine in 2016 for his work.

Autophagy, as a recycling and cleaning act, is essential in many physiological processes. It is triggered by the need to adapt to a lack of food caused by starvation or intentional fasting, but it is also a response to infection. Furthermore, it is now known that mutations in autophagy genes can cause disease, and that the autophagic process is involved in several conditions including arthritis, cancer and neurodegenerative diseases. But nobody yet understands how.So perhaps the view of fasting will change in the next years. More research is needed to understand autophagy and how exactly it may be connected to arthritis. We might find out that autophagy could contribute to the treatment of diseases, perhaps even by fasting!

The Luxury of Despair

The Welsh singer-songwriter Martyn Joseph sang at a music festival in our village last August. A song was about the conflict in Palestina and the fate of those innocent civilians living there. „Despair is a luxury,“ he sang. (There’s the link – check the song out!)

Martyn Joseph singing at our annual music festival in August 2018

Those lyrics struck a chord with me. I remembered how a neighbour met me in a train last May. My hand and arm were bandaged with a dressing of anti-inflammatory cream. The medication that had transformed my life since Christmas 2015 had been working less well in the previous months. Now it had stopped working entirely, and alternately my wrists, arms, knees swelled up. I had backache and felt exhausted, drained of energy, not rested after sleep. We talked a little, and she said, „You are brave.“ I said, „I’m not. I have no choice.“

Inside I didn’t feel brave. I was frightened. Frightened that the joy of life, given back to me by the treatment, was lost. Frightened that I would go back to chronic pain, frightened that I might not be able to work, frightened that I would be too tired to go out into the world, and loose the social life that keeps my soul afloat.

Six months on, one of the alternatives that are currently available, does seem to be working. The swelling disappeared in June and the back ache that plagued July is gone too. Side effects are being controlled with another medication. I am energised again, able to get up early, go hiking, swim, go out in the evening and generally feel good about myself again. I’ve just been on holiday for two weeks of swimming, diving, reading, eating, fun with friends, and generally had an amazing time.

In retrospect, it‘s a shame that I allowed several months to be marred by feeling miserable. My doctors are caring and will do their best to find a treatment that will help me. I am incredibly lucky to live in a country where my treatment will be paid for, more or less whatever it costs. (Think of the people in poorer countries, where this is not the case; and for the Americans with disorders like mine, who told me that they will not get insurance cover, if President Trump’s health care reforms are enacted). I have a job and an understanding employer. I have a secure home, and a loving family. There are plenty of things I can still do, even if I have aching joints. Things could be so much worse.

“Despair is a luxury” sings Martyn Joseph. If you can‘t change anything, then despair has no use – it’s like a luxury. That’s how I understood the words of the song, So, if despair can galvanise me to go into action and change something, then it’s useful. If not, despair is only destructive and will never end. Acceptance and trust are the keys; enjoying every moment, when nothing is seriously wrong – and of course even during a flare-up, there are such moments.

Meditation is the greatest tool I know to instantly get into a mind-frame of acceptance, trust and happiness. But exactly when I’m in pain and feeling bad about myself, is the time when I don’t use it! If I have backache, or other aching joints, I find meditation most difficult….. Will I manage better next time? I’m working on it.

Am I really what I eat?

In the bad old days when life seemed to be filled only with pain, I used to comfort myself and find moments of peace with the thought: „I am not my body!“ If I could see myself at a level of consciousness where my soul and not my body was in charge, then the pain lost its power over me. That was rare, but it did happen.

If I am not my body, then I am also not what I eat, right? Up to now I believed that medication, exercise and stress-reduction are more important for my well-being, than food. However, the more I learn about diet, the more I think that it may be important too. Diet seems to be the question that interests people the most.

The leading Swiss charity for musculoskeletal disorders, the Swiss League against Rheumatism, recognises that many patients would like advice about diet, but do not know where to find reliable information. They publish an excellent series of articles explaining the different views (German, French, Italian). Many rheumatologists are sceptical of or reject any significant dietary influence on the development of chronic disease, and fear that special diets may lead to nutritional deficiencies, and make things worse for patients. At the other extreme there are holistic physicians, and health advisors who believe that diet can even replace medication.

When the disease flares up, I would try almost anything to alleviate the pain; and it seems intuitively plausible that what we eat may affect the progress of disease. It is well-known that a poor diet can lead to other health problems, such as Diabetes or cardiac disease. But what about Arthritis? Health care specialists who believe that diet has no influence, point out that there is no clear evidence that diet makes a difference. But that could be because the subject has not been adequately researched yet. We still don’t understand what triggers arthritis, so in my view it’s too early to eliminate diet from the list of suspects.

But where can patients like myself find the information to make their own decisions?

My General Practitioner sent me to a nutritional consultation at the local University Hospital. I was amazed to learn that they even have a leaflet for people with inflammatory arthritis (published by the Swiss Society for Nutrition in German and French). There I was told that many elements of a Mediterranean diet can help reduce inflammation.

The picture shows me with my kids eating a Mediterranean diet on holiday in 2014. We were doing it years ago!

The first thing is to guard against Osteoporosis. I‘ve had reduced bone density since my mid-forties, so that means making sure I get enough calcium (Fish, cheese, yogurt, various seeds – you can find information on the web) and Vitamin D (supplements and going out into the sunshine).

People affected by inflammatory arthritis need a lot of protein, which is contained in meat, fish, eggs, dairy products, beans and pulses. Some of those foods may promote inflammation, as I explain below.

If there are foods that promote inflammation, then people like me should avoid them, and eat more foods that are anti-inflammatory. That’s where the Mediterranean food comes in. As is well-known many Western diets contain high levels of Omega-6 fats, in particular arachidonic acid. These are considered to promote inflammation and are found in meat, eggs and high fat dairy products. Our Western diets contain a lot of arachidonic acid. So according to the advice I received, these should be reduced as much as possible. The anti-inflammatory „good“ foods contain Omega-3 fatty acids, like fish – so cod-liver oil really is good for you! – and certain oils. Oils that are particularly good are Linseed (we had that at home when I was a child, but it was only used to grease Cricket bats), walnut oil and rapeseed oil. To my disappointment olive oil is good, but not amongst the very best.

The last advice is to eat things containing something called Antioxidants because they scavenge „bad guys“ called oxygen radicals (who would think that something with the word oxygen in it would be bad for you?). You get your antioxidants if you eat lots of fruit and veg, and whole grain products, and nuts and seeds.

I was delighted with this advice, except it described quite well the way I eat anyway, and I‘ve still got active AS. What can I change?

I suspect that I still eat a lot of unhealthy food, even when I think that I am eating healthily. Ten years ago I visited Japan for 2 weeks.

Vegetable seller in Japan — Vegetable market in Japan

Pasta chef in Japan — Fresh pasta chef in Japan

The food was absolutely amazing, lots of weird greens and freshly made pasta. It was before my AS diagnosis, although I‘d had symptoms already for many years. I remember well how astonishingly energised and healthy I felt. I had no idea why but vowed to eat Miso soup for breakfast from then on. My promise to myself didn’t even hold a week! In the rural area in Switzerland where I live it was hard to find Miso for the soup, and my family preferred to start the day with traditional Swiss breakfasts…

Brunch bei Marlene und Sämi Wyss Rubi, Hagiboden — Traditional Swiss farmers’ breakfast

Maybe writing this blog will motivate me to try again and report in more detail in a later blog, on what I discover. The whole subject of diet is huge, and I find it quite complex.

Recently I went on a alpine trip collecting wild herbs. In the evening we prepared a wonderful 5-course meal with these plants. It was delicious, and again I felt marvellous afterwards. I’ll leave you with a picture of our starter.