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!

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.