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.
Thanks for reading!