Category Archives: hashimoto’s
In December one of my main client contracts will come to an end and as such I have been slowly starting to think about what I will do next year. Much as I love living in Zurich it is a very expensive place to be based without a permanent job so I am toying with the idea of moving somewhere cheaper. Having also just had my heartbroken by a Swiss chap I am also less happy here than I was and contemplating a move.
Traditionally people would move based on where their job is and for many the first move abroad is the result of a job offer. This was true for me too – the first time I moved abroad as an adult was an office transfer from the McKinsey London office to their Zurich office. Since then I have become a veritable frequent mover and have lived in Switzerland 5 times, Spain twice, Denmark once and London twice. Most of the moves have been work related but not all, and not all by choice. Some would say I’ve had my fair share of bad luck with work – redundancy, the brand I was working on failing in PhIII, interview & reality not matching up, etc. – but I like to think of it as good luck. It is thanks to my luck that I have had this truly interesting career, with a breadth of highly relevant experience, with multiple organisations and in multiple countries.
It is thanks to this experience that I am also able to seriously consider not only what my next job will be but also seriously think about where I want to work. Unlike when I started my career, today, thanks to the blend of my experience, area of expertise and technology, I can contemplate moving anywhere in the world. I no longer need a fixed office or a permanent 9 – 5 job or even be based in the same country as my work / client. I can seriously consider becoming one of a growing number of digital nomads.
This freedom and flexibility is behind the growing number of people becoming digital nomads. Many of them are millennials not yet ready to settle down and wanting to travel the world but there is a growing number of seasoned professionals, like myself, who place increasing value on this freedom and flexibility. Whilst many of the jobs these digital nomads do are as developers or content creators, and not always particularly senior, times are changing. One of the roles I do for example, reverse mentoring, I can do extremely well remotely (in fact it is sometimes easier to share a screen remotely rather than squish around a physical screen in a room together) – all I need is good wifi. For other work that requires me to be face to face it is generally easy enough to hop on a flight. In fact it may even be cheaper for clients to have me working as a digital nomad, and pay for the long haul flight, simply because I can charge less per diem if I am based somewhere like Thailand as opposed to Switzerland.
Whilst being based near a beach does sound wonderfully rosy it is not without its drawbacks. I am actually quite a settled, homey person, and would never have chosen to move jobs or countries this often by choice. However this is the deck that I was dealt and I now also realise that life is short and that home is where you make it. It is also thanks to my autoimmune disease that I have learned to truly value my quality of life.
Whilst I do not see myself being an endless digital nomad at this point in my life I feel it may be a good move for me. I am still young and healthy enough to do this. There is still much of the world I want to explore and new skills I want to learn (like free-diving) but I do not have the resources, or inclination, to take a gap year and just travel. I would like to continue working but travel – the classic digital nomad. Who knows where I will end up – ideally with a permanent job somewhere near a beach 🙂 – but I feel ready for a new chapter in my life and a new journey. And so I am starting to explore my options as a digital native, and in the process replacing the hopes and dreams I had with my ex with new hopes and dreams, and in doing so help my heart heal.
I am very open about the fact that I have an autoimmune disease, Hashimoto’s, and I try to do my bit to help educate others about this disease, and other autoimmune diseases. I feel as an educated patient, who works in digital health, I am well placed to do so and to a degree feel like I have a duty to do so.
Sadly one of the common problems for Hashimoto’s patients is a sensitivity to gluten, and I am no exception. Prior to becoming ill I used to poo-poo people who said they were allergic to gluten, putting it down to a health fad. Then, a few years ago, I became very ill, despite taking medication for my diagnosed hypothyroidism. I had put on over 15kg in a very short period of time, had very bad depression, fatigue, brain fog etc. I had been diligent in taking my daily medication but despite this these symptoms worsened. It was only after a visit to an endocrinologist in the UK, who diagnosed my Hashimoto’s, and some online research that I started making some lifestyle changes.
One of those changes was removing gluten from my diet. I love gluten and removing it from my diet has been one of the hardest things, and to do this day I wish I could eat gluten. Howeve
r I have learnt that if I do eat gluten the above symptoms return and I feel terrible. It can make eating out in restaurants hard but increasingly I find restaurants are understanding and accommodating of my food allergy. Even in Sri Lanka they were aware of what a gluten allergy is and went out of their way to make sure no gluten made its way into my food. In the US I had f
ound there was traditionally a higher awareness than in countries like Sri Lanka, and so I always had confidence in the waiting staff in restaurants there.
This was clearly an mistake. The other week I was over in Austin at SXSW (and yes I must blog about that too!) and had dinner at what used to be my favourite sushi restaurant there, Ra’s Sushi. I had a long discussion with the waitress about my allergy and she was great in trying to suggest options for me off the menu. I opted for a crazy monkey roll minus the tempura and she brought it with the eel sauce on the side flagging that the sauce may have gluten in it (so I did not eat that). The roll did come however with a lovely mango sauce which I did eat (it part of the dish and not served in a separate bowl).
What then followed was what I initially put down to be an extra severe hangover (this was SXSW afterall!) but by day 2 I still felt pretty out of it and not well. Must have been something I drank I mulled. I then went back to Ra’s for lunch and ordered the same thing but this time it came without the mango sauce. When I asked about this the waitress informed me that the mango sauce had gluten in it! As you can imagine I was royally p***** off by this and all of sudden realised why I was feeling so rough! How could they have been so callous with my health despite my very clear and careful flagging of my food allergy?! This is not some random, obscure allergy either, but one that many autoimmune patients suffer from.
Now a week and a half later I am still ill as a result and I feel it my duty to write about this to try to make people aware that a gluten allergy is not some “fad”. It is not something I choose not to eat. Nor is it all in my head. Gluten has a very real impact on my physical health and well being – and believe me I really wish it did not. I would love to eat bread or pasta or random sauces like a “normal” person. But I can’t. And a restaurant should take my, and other’s, food allergies very seriously. I am “lucky” in that I can still function – to the degree that today at work someone commented on how well I was looking. Great.
Let me describe to you what it feels like when I eat gluten – and why even if I look great I am actually feeling incredibly rough. Firstly there is the fatigue. Autoimmune fatigue is hard to explain unless you have actually experienced it. It is more than tired. I ache. I feel like I have not slept properly in days, and that I have a huge hangover and the flu all rolled into one. I feel like I have been doing extreme physical exercise or been on some extreme sporting event for days. Trust me I haven’t! Despite my over 10 hours of sleep I am exhausted – and I have had a fairly easy day with next to no mental or physical exertion. In fact I have had some awesome, fun meetings today – I should feel energized and reinvigorated. But no – I just feel like I have a really bad flu – I am shattered, I ache and my neck area (where my thyroid is) feels particularly sore and sensitive. Despite this I also know that I may have trouble sleeping properly – one of the great paradoxes of Hashimoto’s fatigue + sleep disturbance. Awesome combination.
That unfortunately is not the end of it. The other major symptom is brain fog. Just as autoimmune fatigue is hard to understand and describe so too is brain fog. Again I will liken it to a hangover – when you just cannot think straight – but far worse. I have next to no memory right now and have to write everything down on post-its. I struggle to clearly remember the bulk of some of my meetings – only the gist. I am struggling with people’s names (although I have never been good with names).
Brain fog however is more than just memory – it is also means I cannot think as clearly. For a split second today for example I could not remember how to look at the next week on my calendar. Basic and yet for a split second I drew a blank. I am extremely fortunate that I am highly intelligent and can compensate for my brain fog – as one of my colleagues generously mentioned today I was just a “normal” person and not my normal bright, on the ball, intelligent self. She said that she would never have guessed the difficulty I was having intellectually. I still got all my work done – but it was hard work and I was painfully aware of the gaps in my cerebral capabilities. Again I am fortunate but my years of experience also means I can cope and still deliver great work despite my brain fog but what about those with less experience? How would they cope?
This then brings me to my final point. Many of us autoimmune patients look fine, normal, healthy. You may never guess the battle we are going through or just how incredibly ill we feel. We have a chronic condition that we have to live with and deal with and we plod on, we persevere because we have to. Whilst on the one hand I am happy that I look great (and clearly my Karen Millen dress is hiding my gluten-related bloating well) on the other hand I do sometimes wish people could see just how ill I feel. I think if you could see how ill we patients sometimes really feel you would be in utter awe of us.
We do not want your pity though – but we do want you to try to understand. And we also want you to respect our health and our allergies and not be cavalier about it. If you are a restaurant and a customer states they have an allergy then you need to do your utmost to make sure that that is respected and if you cannot do that then be honest and open. I would rather have gone hungry than eat gluten that day and suffer the consequences for days and weeks later. Needless to say neither I or my friends will ever frequent a Ra restaurant again, and if you have a food allergy I would suggest extreme caution eating there – which is a shame as the sushi is awesome.
I might add as a final piece though that they clearly do not care as my complaint remains unanswered and ignored. Perhaps by reading this they will get a better grasp of what it means to ignore someone’s allergy and realise that as a result of their disregard for my allergy I now have to suffer and struggle through these horrible symptoms. Maybe this one post will mean that they will start to take food allergies seriously and that no other autoimmune, or other, patient will have to needless suffer as a result of one dinner out. Let’s hope!
PS. For full disclosure the sushi in the photo is one I made not one made by Ra’s sushi. And it was 100% gluten free.