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.
Before I got ill, I used to think that generally young people were either a) healthy, or b) had an illness which could be cured, or c) had a terminal illness. But actually there’s another category – chronic illness, which is a lifelong illness. Lupus and M.E both come under this category. It’s something which has no known cure yet. That is not to say that people do not recover, because some do, but the recovery rate is very small (less than 5% for M.E, and taken over a lifetime it may even be much smaller than that, because 90% of those who do recover, do so in the first year of illness, often due to realising it early enough in its mild stages and not over exerting), and even for those who recover, relapses can be very common. There often isn’t much research done into it, and in many cases disproportionately affects far more women than men.
With M.E – there is no certainty. Every day is different. I have hope for the future and my hopes right now consist of “one day I hope I’ll be well enough to go to the cinema, or go for a walk in nature”. I have to live day to day, and try to find happiness in the smallest moments. M.E warriors (and we say warriors because everyone who lives with M.E is quite frankly a warrior to be dealing with so much!) each have a completely different pattern of illness. “Relapses”, which is when the body shuts down even more and stops functioning properly (that’s the best way I am able to describe what M.E is), can occur suddenly, or gradually, and can last for days, months or even years or decades for some people. Relapses can occur due to over exertion which is different for everyone with M.E, stress (physical or mental), viral or bacterial infections, exercise and so on. Slowly, with a lot of rest, a person with M.E may feel better, and get back to a better level of functioning – but even at this better stage, their life is very different to pre illness levels. Even in mild M.E, functionality is only 50% of what it used to be. For someone who used to be so active, to have about 80 or 90% of their functionality taken away from them suddenly (as is the case in severe M.E), is terrifying.
For example, over the past year, my “good stage” has been when I was able to stay upright (sitting up) for a few hours at a time which meant I could go for meals with my friends once a month, go for a 5 minute walk, once a week (but then have bedrest for a few days afterwards) , yoga once a week and was able to eat 3 meals a day. The rest of the time was spent lying down in bed. That was my limit. But if I did anything more than that – for example, when I tried to fit in half an hour or an hour of studying a day, the concentration and stress that it put on me, made me so unwell I wasn’t able to even sit up to eat my meals afterwards. It’s like I had such limited energy and my body has such limited resources, and if I pushed it even a little, it collapsed. This is called post exertional malaise – exerting myself, even a little, leads to symptoms (Sometimes the full effects of exertion aren’t seen till 24 hours later). This “good stage” lasted for about 3-4 months.
And over the past year, my “worst stage” was when I exerted myself too much with trying to walk 10 minutes (see my previous blog post), 2 months ago. After that, I got such bad orthostatic intolerance that I couldn’t remain upright (even sitting) for more than a few seconds. I couldn’t use the bathroom even for a few seconds without leaning my head on someone, I couldn’t concentrate or listen to people or even talk as my words weren’t coming out properly and my body stopped being able to digest food properly – I had to start having baby food sachets which I could have while lying down. I couldn’t walk for even a few steps. I felt like my body was shutting down. Looking back, I am so grateful that I just stopped doing things and started resting when I did, because i could have become worse than even that.
With bedrest for the past 2 months, I slowly feel a little better. So now i am able to sit up for a few minutes at a time, which means for the most part I am able to have some meals a day (even if the portions are still small). I am still nowhere near my “good stage”, and even that “good stage” may actually be a nightmare for many healthy people! For someone like me, who enjoyed and loved food so much (I was at a different restaurant every week and went to Nando’s all the time!) it really does make me sad that I am having such trouble with food. So another of my hopes for the future is to be able to eat what I want, and be well enough to enjoy it!
So my point is… with this illness, my expectations changed. I no longer have the expectations of life that I used to. I don’t know when I’ll be able to work or study. I know right now I can’t have the same sort of life as many of my peers. Having limits is ok – I can only do what I can, and not do what I can’t. I have seen how much pressure and exertion can effect me, even the smallest amount over my limit. It’s something that is so hard to put into words or explain properly. And that’s the problem – my limit is different from day to day. For example, earlier this week I woke up and did some light stretching in bed, and my legs started to seize up. Yet today I did stretching in bed and I’m well enough to be able to continue writing this blog post lying down, even though it’s taken me quite a while to get this written and I’m already starting to feel the after effects of writing it. Every day can be wildly different, in terms of strength, energy and how I feel, even within relapses or good stages. So living day to day, really is the only way of living for me.
When I started this blog, I was certain I would get better, if not within a year then at least soon after that. That everything , and especially chronic illnesses, could be cured. But I no longer believe this, because I have seen how even when we still have so many limits and still are sick, those with M.E actually try twice as hard as the average person to keep living their life, and try so many things in the hope of getting better, but are often only able to achieve a fraction of what others can. Its like living with the functionality of an 85 year old (and for those with severe M.E, that is actually the observed functionality) when you are 25. Your freedom and independence and hopes are taken away from you. It’s not about not wanting it enough or not trying hard enough or just believing – if it was, we would all have been cured.
It takes far more strength to accept that illness happens and that life is uncertain. Nowadays, I don’t think healing is the absence of physical problems – after all, it is in the nature of the human body to get sick sometimes, sometimes it recovers from illness and sometimes it doesn’t. I think healing is about accepting what’s happened, having hope that it may get better but in the meantime, thinking about the way we can still live a fulfilled, happy life with whatever life throws at us – whether it’s a relapse or a recovery. And it may well be the case that I make a recovery, or even have a period of a few years when I am well and able to do the things I used to do. But equally, that might not happen, as has been the case over the past year (or two years, if I count the fact I had the milder stage of illness for a year at least before it got worse). I may have ups and downs. Whatever happens, I have to try to find peace within that and be patient with myself.
There is a culture I think which says “you can overcome everything, if you put your mind to it”. One in which if you eat healthy (which I do), and make lifestyle changes, and want to do something, you can overcome every illness. And so if we don’t overcome it, it’s a problem on our part: it blames us for being ill, for talking to ourselves in a certain (or negative) way. I really dislike this culture because quite frankly, lots of things are out of our control. Yes some people are able to recover and there are amazing stories, it is wonderful to get hope from these stories and use the many tools and suggestions they give us. But scientists still don’t know why some people recover while many are bedridden (in the worst case) or ill for decades, despite people often trying similar methods of getting better. Those people who are still ill have not tried any less. Scientists don’t know why people can get ill, then feel better, and then still get huge relapses, while others stay well.
I still meditate and do gentle stretches on my bed when I can, because I can see how much it helps with blood flow and circulation when I am predominantly bedbound. It also helps keep my sensory overload under control (which is something I get when I am very ill, and need to lie in a dark room with an eye mask and no sound). I do it not because its a cure, I do it because it helps. I’m eating healthily and taking supplements to help with energy. And everyone with M.E eventually finds their own way of coping, of living with relapses, recoveries, good days and bad days, trying to find happiness and enjoyment where they can, because every single M.E story is different and there is “no one size fits all”.
I hope this helps explain my illness to people in my life, because I know it can be difficult to see me being ill one day, and not knowing what another day may be like, or what the future may hold.
But all this uncertainty doesn’t mean I don’t have hope. In fact I have a lot of hope; I am slowly figuring out what may cause relapses, and what helps me (bedrest and relaxation!); Every month there is new research about M.E and severe M.E coming out from researchers around the world: M.E literally is a mitochondrial shutdown. And one day, hopefully soon, a cure will be found. So there’s plenty of hope for the future.
I am so lucky and blessed to have a support network around me: my boyfriend and my mum (who looks after me despite being ill herself) who care for me and are by my side. I am lucky to have friends who go out with me to eat on good days, and equally lucky to have friends who come and sit by my bedside when I am ill and play board games, or tell me stories about their lives. I am blessed to have people around me who will sit at the end of my bed while I turn off the light and rest my eyes due to exhaustion, because they know how much company means to me. Even when I’m ill, I love hearing from my friends. I am blessed to have a boyfriend who will just hold me when I can do nothing else. Also I’m lucky to have an awesome team of cuddly toys by my side always! This support network has helped me so much, so thank you, it means more than I can say that you are in my life. 💜
Photo of sequins who is a shy cat, she is really kind and gentle and super cute 🙂