ME and me: Living with Myalgic Encephalomyelitis

Colour photo of Tanya Simpson, smiling

Sometimes I mention here about being sick, being disabled, living with a chronic illness, my body not working etc but I don’t go into detail about why. This is because any time I talk in a public space about what’s wrong, I get hit with a heap of unasked for ‘advice’ and a barrage of “I read this thing about…” or “I heard about this one guy who…” or “My cousin’s next door neighbour’s friend had that and…” and it kind of makes me want to set people on fire. Not that I actually would, but you know.

That said, I like to provide context for the things I mention here, so I’m going to do that now. Even though it’s difficult as hell for me. Even though I’m steeling myself for a bunch of comments that make me want to throw my computer and then myself out the nearest window. It should go without saying that comments containing unasked for ‘advice’, an amazing ‘cure’ that totally works, or links to that one thing you read are not welcome.

For the last thirteen or so years, I’ve been living with ME, which stands for Myalgic Encephalomyelitis (which I can just about spell without looking it up). You might not have heard of it because although it’s been around, and known about, for a long time, it is often referred to by the very dodgy name Chronic Fatigue Syndrome, or CFS, which was invented in the 1980s by psychiatrists who like to make money and medical insurance companies who like to save money. Referring to ME as Chronic Fatigue Syndrome is reducing a complex physiological condition to one unquantifiable symptom, which is not only inaccurate but dismissive and dangerous, although it does make googling it a hell of a lot easier. Yep, I am very political about this. But hey, at least some countries are making progress (please make this happen in the UK soon!).

ME is not a psychiatric, behavioural or psychosocial condition. This means that it cannot be fixed with talking therapies or any form of psychiatric or psychological intervention. Frustratingly, a horrifying but much-hyped example of shocking non-science (which has recently been debunked – yay!) informed a lot of media coverage, medical approaches and policy relating to the condition. Hopefully things will get better for those of us living with it as the medical industrial complex around the world catches up.

It isn’t currently known exactly what causes ME, although there have been lots of theories but sadly very little actual research. What IS known though, is that it doesn’t affect everyone in exactly the same way for exactly the same length of time. Some people get better after a few months or a couple of years, some people get better after a longer time, and some people don’t get better at all. Generally, the longer you’ve been ill with it for, the lower your chances of making a full recovery – although some people do.

Something that massively ups your chances of getting better more quickly, or at all, is if you can completely stop doing everything during the acute onset stage and then gradually build up activity very slowly over a long period of time (this is NOT the same as Graded Exercise Therapy, or GET, which is at best useless and at worst seriously dangerous). This is really nice in theory, but when you literally do not have the option to do this because you can’t live without money, it throws a bit of a spanner in the works. For context, I became ill 13 years ago. This year, we could afford for me to stop having a job that involved either working for someone else or being self-employed with clients.

Because there’s a lot of snake oil and bullshit being thrown around by unscrupulous frauds who like to extract money from vulnerable sick people, because people get better at different rates, because everyone loves a recovery narrative and tends to assume that correlation implies causation, you might have heard about people being ‘cured’ by doing stuff that doesn’t make any actual sense and can’t be in any way medically or scientifically explained. This is very frustrating because it detracts from the very real need for genuine research. So instead of suggesting that I eat more blueberries, just force myself to go running (I wish I could!), or reprogramme my braindoodles with magical hypnowaves, please take a deep breath, read the rest of this post and really try to understand why those suggestions are genuinely awful to be on the receiving end of.

In terms of what ME does to a person, there are varying degrees of severity. Symptoms also tend to fluctuate, so things can be “meh, sort of vaguely OK or at least not totally imploding” one day and “someone pulled my skeleton out of my skin and ran over me with a steamroller” the next. On a good day, I feel like I’ve been awake for two days straight taking acid at the gym and during the forty mile sprint home I got hit by a truck full of sedatives and pain. On a bad day, the truck full of sedatives and pain is driving over me then reversing again, repeatedly.

There are symptoms other than crippling exhaustion and constant horrendous pain, but they’re less fun to describe.

  • I have allergic reactions to everything and nothing, leaving my skin often looking like someone set it on fire and put it out with a pitchfork.
  • My ability to see fluctuates wildly (muscles control eye stuff and ME is bad for muscles) so sometimes my glasses are great and other times they don’t do much at all.
  • My body forgets how to do really basic things like digesting food properly.
  • If I get a cold, it full-on kicks the crap out of me for weeks, sometimes months.
  • My brain fails and I forget how to word (yes, I am a writer and yes, this is a massive bastard of a hurdle to get over).
  • My balance is screwed.
  • Bright lights and loud noises hurt (and there you were thinking I wore sunglasses all the time cause I was famous). The world is an overwhelming sensory explosion of argh.
  • Walking is (delete as appropriate on any given day) difficult/very difficult/impossible, and it is always painful. I have walking sticks, but to use them I need a certain level of energy, coordination and upper body strength, so I can’t actually use them when I need them the most.

On top of that, or rather beneath that because it happened first, my back is a total mess due to an injury that no-one took seriously for a decade after it happened, even though I was literally in hospital immediately after it occurred (although, to be fair, making sure I wasn’t having a fatal brain bleed was kind of the priority then). My spine is bent in a bunch of ways it isn’t supposed to be and everything healed in the wrong place, so the bones are wonky and nerves get trapped all the time. Although it’s past the point of being fixable, degeneration can be slowed down and possibly even prevented with certain types of physical activity. But guess what ME makes it really difficult, often impossible, and frequently counterproductive to do? Yep. Most of those kinds of physical activity. I can still sometimes do yoga though, so yay! Yoga also helps me not want to punch people, which is a pleasant side-effect.

My knees are a mess as well, also from injuries that weren’t taken seriously at the time and that have since healed wrongly and aren’t repairable. Luckily, before having ME, I spent a lot of time in the gym and doing other cool stuff with my body to make my muscles big and awesome. I am endlessly grateful that I still have the strength I have. Also, using walking sticks is incredible exercise for the upper body, if you’re ever looking for a change to your fitness routine.

Living with all that stuff, in a constant state of financial instability due to hugely reduced physical function affecting my ability to do almost any job (“financial instability” is the world’s greatest understatement, but that’s another story) kind of melted my brain. This is getting pretty long already so I won’t go into detail here about the effects it all had on my mental health, but it’s miraculous that I’m still alive at all and my husband, parents and close friends deserve a lifetime supply of cookies for helping keep me around.

Here’s the kicker. I might get better one day. I might get slightly better one day and a lot worse the next and a little bit better again a few months after that. Or I might be living with this for as long as I’m living, with all the ups and downs and further downs it involves. I look after myself ridiculously well and while I will always carry a spark of hope that one day this illness will be accurately understood, treatable and ultimately curable, I refuse to keep my life on hold waiting for that day.

You don’t often hear stories from people who have had ME for years because those are difficult stories to listen to from people who fall through the cracks and don’t get to tell them. The government, the mainstream media and a large proportion of people I share a country with constantly reiterate the message that I, and people like me, are lazy, worthless, drains on resources who would be better off dead. Every time we try to speak up, that’s the noise we have to raise our collective voice above and it’s difficult. Especially when you’re so wiped out you actually have to concentrate on breathing because your body keeps forgetting to do it until you almost pass out then gasp for air. That’s pretty scary when it happens.

I did not do this to myself. If wanting, trying, working, fighting, needing, wishing, or anything else within my power could make this better, I would have got better the day I got sick. I was super fit, healthy and active before all this. I was working full-time, overtime and then some. I was one of those people who got up at 5am to go running before work and could get two hours sleep and be perky as anything the next day. I was a “Wow, where do you get your energy from?” person. Yeah, you know those people. That was me. Sorry.

My life and my body may have changed but the core of my being has not. I am determined and strong. I am grateful and hopeful. Sometimes I am frustrated and, as a friend once described me, defensively fine. I have always been this way. I am neither an inspiration nor a cautionary tale.

I am one of many and I refuse to be silent.

If you want to learn more about ME (please do, so you can be an awesome ally!), I recommend these links:

  • The Canadian diagnostic criteria: This is the business! No “oh well, we’ve ruled out cancer and we’re not sure what else do to with you” here. A serious, detailed, medical diagnostic tool that, although not exactly a wild read, is SO worth looking at to help you understand that extent of the impact that condition has on people living with it.
  • ME Association: A helpful resource based in the UK, which offers phone and email support to patients, their families and their caregivers.
  • The Hummingbirds’ Foundation for ME: This site contains a wealth of incredibly detailed and well referenced documents. Sadly, the wonderful human who created it passed away recently, but thankfully the site remains in existence and continues to help people, which is the perfect tribute to her.

20 Replies to “ME and me: Living with Myalgic Encephalomyelitis”

  1. First: I’m so sorry you got dealt this hand. Sounds like total suckage — and beyond! –that you in no way deserve.
    Second: a pox on all their houses! to every medical expert, doctor, nurse, treatment provider, and other, who dismissed your complaints, missed your symptoms, and minimized your pain. You deserved so gd much better. If you ever want/need help setting any of ’em on fire, lemme know. I am SO your gal.
    Third and final: thank you for the links, and for educating us (certainly me!) in your own writing today.

    Liked by 1 person

    1. It does suck in a lot of ways, but I’ve been ill since I was 23, diagnosed when I was 24, and I’m 36 now so it’s been with me for most of my adult life and it’s kind of normal-ish now. Sometimes I still catch myself feeling annoyed or getting upset about things I can’t do, but I try really hard to focus on the things I can do, and the things I would never have even tried if I hadn’t gotten sick (like photography and writing!).

      Also, I’m always up for making a party out of setting people on fire 😉

      Liked by 1 person

  2. I have been educated in the last five minutes more than any other five minutes I recall. You have with incredible power and delightful humanity told your story, and given voice to all people with ME. Beyond that, your piece explains why the society has made it so hard for them to have a voice.

    Liked by 1 person

    1. Part of the problem is that it’s not an exciting or easily glamorised illness, and people who have it long term often aren’t able to access broad channels of communication.

      Everyone wants to hear “I ate kale, did yoga and thought positive thoughts and now I’m better!” but “I look after myself really well, fight every day and do everything I possibly can to improve my situation but I’ve still been sick for a couple of decades” doesn’t fit the desired narrative. It’s not a fun, heart-warming headline so those stories never get told, or when they do, they aren’t listened to. It’s frustrating.


  3. A brutally honest and brave post, no ‘miracle cure’ here and my cousins next door neighbours friend is just peachy (no fires today!).
    It’s sounds horrendous and I’m well aware that words are of no use here but I’m glad you shared and I’d send virtual hugs if I wasn’t worried about being set on fire 😉

    Liked by 1 person

  4. Oh man, that sucks. My uncle had this for 10? 15? years and is slightly better these days. So glad you have supportive friends, family, husband and that you yourself are basically awesome. Keep on keeping on x

    Liked by 1 person

    1. I have a lot more better days now than I did when I first got sick, thank gods. It’s funny cause sometimes I think “Oh, I’m sort of OK now” and then I remember how completely different my life has to be now compared to pre-sick and realise that I’m nowhere near OK. But I’m nearer than I was 🙂


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