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.
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:
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:
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.
I am so lucky to have a support network who have been with me over the past few years – my mum and boyfriend, as well as lovely friends from high school, university and the local Green Party. Also the wonderful friends I’ve met through the online M.E community. I recently read a quote – “Those who matter don’t mind, and those who mind don’t matter”. I think this quote is wonderful, because the friends I have now, even if they may not understand exactly what I’m going through (I don’t think anyone can unless they’ve had a severe chronic illness), I still feel accepted and loved for who I am. And that is a wonderful thing to feel, when I have been dismissed and hurt and made to feel like I’m just not trying hard enough and am not good enough, by lots of other people (mostly doctors and psychiatrists who really have no business in “treating” M.E). I still do feel lonely and I think that’s to be expected, because I do not see or interact with anywhere near as many people as I used to every day because I am no longer going into London – over the past year I have been predominantly housebound and for periods mostly bedbound, which is why I am lucky to have a support network around me.
So I’m writing this blog post to explain my illness in a way that makes sense to my friends and those who don’t have much experience of this illness.. I hope it helps for you to understand more about me. Continue reading “One year on: what I would like my friends to know “
I haven’t written a blog post for about two months, and the reason is that I have become very ill. For my friends who do not know much about M.E, I hope you will read what I am about to write so you can understand the severity of the situation in the UK – it is not just happening to me, but to many other hundreds of thousands of people across the UK.
I have both Lupus and M.E, and while Lupus is taken somewhat seriously, M.E absolutely isn’t. Looking back, from June onwards, I was starting to notice more and more days when I felt overly unwell. This coincided with the time that I was put on a new CBT/ Graded Exercise trial, called the PRINCE Secondary Trial, run in St Thomas Hospital in London . For a long time, for hundreds of years, medicine didn’t understand M.E. A huge number of cases start with a serious viral infection (in my case suspected glandular fever which landed me in hospital for 10 days), and after that, patients are left with a condition that ranges from mild (where they are sometimes able to work but the energy required to do that, means they often don’t have energy to do much else), to severe (like me – housebound and/or bedbound) or even very severe (when they are bed bound, cannot move or swallow and need to be fed through a tube and cannot tolerate light, sound and touch). Often the severity of the illness doesn’t become apparent until the person pushes themselves too much, sometimes a few months after the virus (in my case, exactly 15 months after the virus first hit – after a year of pushing myself despite feeling increasingly ill, I became predominantly bedbound). It affects every area of the body – the central nervous system, the cardiovascular system, the immune system, the brain, temperature control, the endocrine and gastroestinal system. Many years ago, because conventional blood tests did not explain the illness, and patients remained in such a severe state of illness for so long (the recovery rate is just 5%), instead of deciding to investigate it further, researchers decided to focus on the “psychology” of the illness. They called it CFS (Chronic Fatigue Syndrome), to belittle the illness, to make it seem as if we were just tired all the time. But as all M.E sufferers know, fatigue is just the tip of the iceberg. Those psychologists decided, with the help of a (now discredited – see links below my post) trial funded by the Department of Work and Pensions (called PACE), that the reason why patients were ill, was because they had “illness beliefs” that are “false”, which led to deconditioning. So it was decided that patients should, through a course of graded exercise and therapy, not think too much about the fatigue and the pain, even if they felt worse and worse. Continue reading “How me and my M.E became worse “
I wrote a poem, which was inspired by many things, but most of all the beautiful plant I have on my windowsill 🙂
I see beauty
in something so small
in a green shoot
I see beauty
from which comes the little bud
This post is all about the different things I do now in my life, and how they all work together. As many of you know, I have felt a little bit better over the past few months, so although I still need help with most things, I am able to do a little more during the day.
I’ve been doing things which make me smile: designing clothes, putting quotes on my wall, spending time with friends, reading books, and I am happy that I have had the opportunity to do all this.
Here’s a dress which I made with my mums help, on my amazing Singer sewing machine, which has a heart print and lace hem, isn’t it cute 🙂 :
I write in my beautiful gratitude journal, which helps me feel a little less sad. I’ve been reading books on buddhism too and they allow me to take a step back from things I can step back from, which is so important, and know that I do not have to be overwhelmed.
(This is a page from my gratitude journal, Buddha Doodles Gratitude Journal: look at the beautiful illustrations!):
Over the past few months, I have come to realise that aiming to be positive all the time and rejecting and resisting negative thoughts doesn’t work. More than that, it’s not good for us because we beat ourselves up when things go differently. I think it’s important to acknowledge that there are times when we haven’t been able to be happy, and it’s ok.
Last week, I was very ill with a virus, and it completely knocked me out. I literally couldn’t leave my bed and felt as ill as I did during my flare last September. I couldn’t stand without the dizziness becoming too much, I couldn’t eat solid food. While I was feeling this ill, negative thoughts resurfaced.
Over the past few months, I had started doing yoga and meditation and had even started eating very healthily, and felt like I was getting better. So when a small virus managed to hurt me this much, I felt very down. A virus had never affected me this much before, and I felt like my search to get better was fruitless. Why was I becoming more ill? At the time, I ended up speaking to someone, and told them I was very sad that I was still ill despite all my lifestyle changes when others had managed to get better.
“Take my hand.
We will walk.
We will only walk.
We will enjoy our walk without thinking of arriving anywhere”.
~ Thich Naht Hanh,
Viatnamese Buddhist Monk, poet and peace activist
We often do not realise the moments that we are missing – the senses that we are not truly using, the people we are not being truly present with, the sounds and sights and sensations that are changing every second. Life is found in the present moment.
This quote came from one of the books I’m reading “mindfulness is simply being aware of what is happening right now without wishing it were different: enjoying the pleasant without holding on when it changes (which it will): being with the unpleasant without fearing it will always be this way (which it won’t)” – James Baraz
And with mindfulness, comes the realisation of impermanence. Literally nothing is permanent: not pain, not any feelings, not the bad ones or the good ones. So mindfulness taught me to treasure the good feelings and sensations, and to sit with the more difficult feelings and sensations, and I know how to deal with them when they arrive. The best I can do, is to be with the present moment: mindfulness can touch feelings in a way that can transform even fear and sadness. There are a lot of buddhist teachings around mindfulness, and one thing I wanted to talk about was bringing mindfulness into every day life.
Today one of my friends told me they couldn’t understand how I could do a walking meditation! So I told them, you can meditate to everything. Meditating is about being in the present moment, sensing all around you and within you at that moment and being in that vast sense of awareness – knowing the richness and beauty of life for all that it is. It is about encountering and recognising feelings and thoughts when they arise but not being caught up in them, and instead, actually living!
Before the walking meditation, think about a handwashing meditation – how often are you thinking of something, when you are washing your hands? How would it feel, instead, to open the tap and allow the water to run over your hands: to feel the coolness or warmth, the softness of the water as it trickles through your fingers, how it feels to rub your palms together and how the soap feels as it froths in your hands? How often do we notice how it feels to walk on the earth, how each step feels? We have a million of these moments every day. I have so many of these moments every day – and now, I just sit or walk with these moments, when I can, where I can, and notice the present moment.
When I went to the park recently, I just sat there, and looked at the trees before me. The lake, the stillness of it, the flowers, the people sitting around and playing. These little moments are our world.
Today I did a walking meditation. I walked around the block of flats with a rollator, only stopping twice to sit down. This was my second time going out: last time I had to stop and rest many times. It is a very short distance, but for someone who could not walk more than 2 steps without pain, this was amazing.
I got strength from mindfulness, from taking each moment as it came. I noticed so many things I hadn’t before, like how many footsteps I took on each in-breath and out-breath, how the soles of my feet within my shoes felt when I walked on the pavement, the softness and slight coolness of the breeze on my face, the sudden warmth as the sun came out and touched my face, the whooshing noise of the cars as they went past. It was wonderful.
I am so lucky to have discovered mindfulness in this way, and to have seen calmness and peace within myself is not only for me – it changes the lives of others around too, which is an even more wonderful thing.
“I have arrived. I am home. My destination is in each step” – Thich Nhat Hanh