Diet and M.E: No, it’s not a simple cure

This is a topic close to my heart that I’ve been meaning to write about for a while. If you google “CFS recovery story” or “M.E recovery story”, you will see lots of people telling their stories and every single person says something different (and I think that’s because so many of those people actually all have different conditions). But quite a few of them say, oh I changed this and I changed that about my diet and now I’m completely better.

And so over the past few years, I’ve tried every single diet under the sun. Sugar free, refined sugar free, gluten free, paleo, high protein, “anti-inflammatory”, “autoimmune protocol”, green smoothies, broths, fermented foods including kefir and sauerkraut, supplement protocols etc etc – I read so many books and visited so many websites, because everyone has a different story and there are so many “natural health” websites dedicated to this. I followed the diets and recipes that books or doctors or other people told me to try, and none of them have helped me feel better. I tried some for just a few weeks (like the autoimmune protocol, paleo diet and low histamine diet) and they caused my stomach to bleed from the inside because I couldn’t tolerate the change in foods. With others, like the gluten free/refined sugar free diet, I did that for a much longer time and saw literally no difference whatsoever except I became more anxious and stressed when I could no longer eat some of my favourite foods which actually worsened my stomach pain and illness! I’m on the autism spectrum, and I can become extremely attached to certain foods, and have a lot of sensory difficulties around food and growing up I have learned which foods I can tolerate and which I really can’t and make me feel “vomity”. These sensory difficulties have magnified. I also have neurological stomach problems associated with ASD from birth which means the nerves and tissue in my stomach are far more sensitive to stimuli and pain, and my stomach reacts in a different way! It’s also incredibly hard for my mum to cook a lot – she is my main carer and makes all my food and is ill herself and has other difficulties with food preparation.

And it’s not just me, there are lots of people with complex conditions which might mean they cannot make changes to their diet or eat the same foods that others can, and also their own carers may struggle to cook a lot too. It’s all too easy to judge, especially in the “natural health” and “alternative health” worlds where things tend to get simplified, especially when people have complex or chronic illnesses – but it’s important to remember there’s a lot that you probably do not know. Lots of people told me and my mum that I became ill because I was a vegan at the time, but they seem to forget there are whole communities in India and other countries who eat only vegan/vegetarian diets (including the Jain community), who are perfectly healthy. Many people often want simple answers to complex illnesses, and find it hard to understand how someone could fall so ill, and so food often seems to be an easy target.

Right now I am eating healthily in a way my body and mind can tolerate, with plenty of vegetables, foods I like, and treats and dessert because food is something to be enjoyed and which brings me a lot of happiness, and my stomach is calmer (as calm as it can be, given the circumstances), and I am much happier with myself than I was with any of those diets or “healthy eating” plans. If I do make changes in the future, it’ll be because it works for me, not for someone else. I know a lot about healthy eating and I think by now, most people with M.E do too. I understand that food can be powerful, and I know that some research shows increasing protein can help when the body struggles to convert carbs and sugar to energy, so some people do go “paleo”.

But you know what? Life often isn’t as simple as that for everyone. Maybe it is for some people. But not for me, and definitely not for some other people like me. Life is complex, and conditions like these are complex, and they don’t always have a simple solution, so please do not ever feel guilt-tripped or judged if you were unable or didn’t want to try a diet you were told to try, or even if you did try it and found that what worked for other people, didn’t work for you. It’s not because you didn’t try hard enough or that you’re not strong enough – it’s because your life and condition is more complex. And if eating your favourite dessert every day is the only way you stay sane through this horrific illness, then keep doing it! Often with M.E there are days we cannot eat at all, or we have to drink shakes when we cannot chew, and many with very severe M.E are even tube fed, so just eating what we can, when we can, and enjoying it and finding happiness in it- is a blessing. Remember: no one else really knows what you’re going through and no one has the right to judge or make you feel bad when you’re sick. 💛

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My health and where I am now

Hi 🙂 I haven’t written on my M.E blog for a while but I’m now feeling a little bit less overwhelmed with my health, so I’m finally writing this blog post 🦄 I have good things to tell you later in the post but before that, I will talk about what happened with my treatment.

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Breakspear medical :  the good and the bad!

It’s been about 2 months since I first went to Breakspear Medical, a hospital which specialises in diseases relating to the immune system. Before I went, I had heard both good things and bad things about Breakspear – and unfortunately my experience also hasn’t been completely perfect, especially as time went on. I wanted to be honest about my experience so far, both good and bad, and not only report the positive bits – because it wouldn’t be truthful for the people who were thinking of going there.

My first appointment went really well. We had stayed overnight at a nearby hotel which was 2 minutes away from the hospital. I wasn’t able to sit up very much so by the time I got to the hospital I needed to lie down – they gave me a bed to lie down in until I saw the doctor, which helped a lot! Then I went to see my doctor, and she was very kind and she knew about Simon Wessley (the psychiatrist who one of the main proponents of the Chronic Fatigue psychiatric theory I.e you think you’re ill so you’re ill) and she criticised him – which was a good sign! She also knew exercise can be bad for M.E. The doctor said she suspected I had a lot of problems with my stomach, which could have been contributing to immune system dysfunction and leading to autoimmune disease.  So she suggested I have blood tests (and stool and urine tests) – I was already prepared for this – in my research I found that Breakspear do run a lot of blood tests to try to find out what’s wrong, so all three of us (my mum, martyn and I) had saved up everything we could for 6 months (and a credit card) to be able to afford the tests. These kinds of tests are not routinely run on the NHS, mostly due to cost.

It took 4 weeks for all the test results to come through – because some of the tests are really specialised:

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New Year Hopes

At a time when so many people are reflecting on the past year, and hopes for the new year, I feel like retreating into my own little bed-blanket fort. Because this year has been very hard, harder even than the years that came before. In truth I started 2016 with a lot of hope and excitement. In January last year my mum did a social housing swap – which meant I was able to move out of our old home which was on the second floor without a lift, and we moved into a beautiful new home which is much smaller and all on one floor. I was slowly getting better and I truly believed by the end of 2016, I would be celebrating New Years by going out with Martyn, that I would be back at university – that I would be able to prepare a meal for myself. That I’d be walking around in London.

Instead, this year has been even harder than the year before. I went through things I would never have imagined – I became so sick that I cannot really describe what happened to me without feeling so frightened when I think back to it. This year, my faith in healthcare was also shaken so strongly – I’ve always been a huge advocate of our healthcare system because publicly funded healthcare is a human right and a need, and of course I still am, but i could never have imagined that a section of society could be failed so badly and for so long by the health system due to political influence. I could not imagine a publicly funded trial, at a well known university (the university I was studying at!) would push me into such a state.

Around the beginning of 2016, I was at about 40% on the M.E functioning scale:

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Keeping hope when you feel broken

I’ve been meaning to write this blog for a while but it has taken a while. Thank you to everyone who is still reading and following my blog, it means a lot to me. Nowadays it is getting harder to blog, but I feel like even if I can only do something small, I want to raise more awareness of this disease, in particular those severely affected and especially in the aftermath of the recent media coverage of the FITNET-NHS trial. I also want to talk about losing the ability to communicate as I once did, and despite everything that is happening to me, trying to pick myself up.

In recent months, one of the worst things that this illness has taken away from me is the ability to communicate by talking, as I once did. Last week, my mum sat on the end of my bed and had a conversation with me, but I could not answer any questions, I could only nod. I could barely take in what she was telling me, because I started feeling incredibly unwell and needed to lay in silence. My boyfriend, after work, came and gave me a hug and asked me how I was. “I’m ok”, was all I could get out, despite my expression saying I wasn’t ok. When he kept asking me what was wrong, I couldn’t answer, I couldn’t even think of the words, and I felt like my senses were overload – in the end the next day I had to text him to explain what was happening to me.

I can type on my phone and read (with a lot of breaks), although they too take a lot out of me, but talking now puts me into a state of debilitation that frightens me. From what I’ve seen, this is a similar story for quite a few people who have M.E: that talking takes far more exertion than typing; the more ill they are, the less they can talk. Up until recently, I was speaking to a counsellor (not an NHS CBT therapist, but a private counsellor because I need someone to speak to about everything that’s happened to me). I was speaking to her on the phone for 15 minutes, lying in my bed. But even that became impossible, because I was having such bad relapses and started becoming very disorientated and confused within the sessions. During my last conversation, my counsellor, who has been practising for many years and has a lot of experience in dealing with difficult situations, including others with M.E, was in shock. She asked me “is this how bad M.E can get? Is this what normally happens? That even moving from your bed is too much, and lying flat on your bed, just talking, can make you so sick?” I told her, yes, I am a severe M.E sufferer and there are thousands in this country like me, but there are those even sicker than me.

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