Severe M.E. – The Hidden Monster

M.E. (Myalgic Encephalomyelitis) is something very few who haven’t lived within its reach truly understand. Like many other chronic illnesses, nobody on the outside can really see its true effects, the worst is mostly played out behind closed doors and in dark rooms.

Before I carry on, I just want to note that, like many other conditions, everyone’s experience is unique to them, symptoms and severities not only differ between person to person but also for each individual on any given day. There are categories, whose names should be taken with a pinch of salt, in my opinion- nothing that takes away 50% of your functioning should ever be categorised as ‘mild’- but these names are all we have right now, so we make do.

I began life with M.E., over 9 years ago now, as part of the Severe category. Not quite Very Severe, but a long way from the lower end of Moderate, where I am now. The initial part of those severe years are what I want to talk about today.

Today is Severe M.E. Day, a day to remember those living with the Severe and Very Severe forms of this illness, and all those whose lives have been cut short by this disease. It’s held on 8th August, as that’s the birth date of Sophia Mirza, the first person in the UK to have M.E. officially recorded on her death certificate when her life was taken, aged just 32. You can find out more about Sophia’s story here.

I’ve grappled with the idea of sharing something for this day for a while. Partly, because I feel an incredible amount of guilt (unfounded, I know) for being lucky enough to experience enough improvement to get me out of that category when others haven’t been given that chance. And partly, because I didn’t realise it was that bad, at the time. At the beginning, I didn’t know any other version of M.E.; I’d never met anyone else with this condition, whether online or in person, I refused to join any online forums or support groups because I didn’t want to think about it, and I didn’t really look too deeply into it. In my naïve eyes, there was this, unable to leave my bedroom and spending every day of the first 5 years or so in bed or in my ‘day bed’, which was a recliner chair next to my bed, or fully better, no middle ground of better than this but still very ill.

And also, I still don’t think I have the words to describe it accurately. But I’m going to give it a go, because a cruel part of being severely affected is not being well enough to even be part of the online world, let alone the outside one, which means there’s very little understanding of what people are going through as no one is ever seeing or hearing about it. People can’t comprehend being that ill and having no control over it. So often, the stories we hear are of people like myself now, which means a whole subset of people, 25% of those living with M.E., are being forgotten about.

Those beginning years are hard to share about in a way others on the outside can understand because I was, and am, at peace with my life; the suffering and pain coexisted with joy and so many happy memories, and still does. Which is probably quite hard for someone not in this situation to understand. You learn to make a good life, exactly where you are.

But no parent should have to watch their child, however old, ravaged by this monster of a disease and then feel so alone because nobody knows anything about it, and they just have to nod along politely to the “she’ll be better when the sun comes out” comments. We need to talk about it, or the fleeting feeling of shame or worry you have when saying those three words “I have M.E.” and stigma surrounded those two letters will never fade.

I’ve never shared anything about my own experience of Severe ME. because every form of ME is devastating and disabling and severely affects peoples’ lives, and I don’t want anyone to ever use my words to devalue themselves and their suffering. But also, because I count myself as ‘one of the lucky ones’. I was never, ever in the ‘Very Severe’ category, and I was definitely never as poorly as some of the people living with Severe ME who are completely bedbound all the time, need feeding tubes, catheters, or are unable to move themselves without help. I want to make it clear how grateful I am for any and every improvement I’ve experienced over the years, and how much that has nothing to do with the person I am or what I have done, and everything to do with the fluctuating nature or this disease.

I don’t have a magic formula (I wish I did) and haven’t done anything differently to the thousands who are still severely affected, this is just how my own disease progression has gone. So please, don’t think my story is a representation of everyone’s or that I’m a representation of what M.E. looks like. No amount of motivation can get you out of Severe or Very Severe M.E., just like no amount of willing it to happen can ever make you able to fly.

I was lucky that the medical professionals I’m under treat those who are Severe and do house calls. Many others refuse to work with anyone not well enough to attend regular appointments, and say that if you’re Severely Affected you’re too ill for them to help. Imagine being told you’re too ill for a doctor to help you, and sent home to manage on your own!?

When I look back to tell you about it, I mostly remember the good, because that’s what I hold onto. But I also remember my dad spending the night in the recliner chair in my room while I lay in bed, stuck in that middle ground of total body shutdown, unable to be fully conscious and unable to settle and sleep.

This was right at the beginning. The fear from someone you love having a disease that doesn’t have a name, and then finding out its name but still not getting any closer to clarification, is something no one really talks about.

It’s amazing how much you can get used to when you have to. The things that initially prompted panic in my parents soon became the norm. Those hours spent with my dad watching closely were soon hours spent alone shut in my room, sometimes for days or weeks at a time. The fear faded fast, the symptoms didn’t, which made it hard for people on the outside to understand. Learning to cope with something must mean things are better, right?

We can look healthy, but people only see us when we’re well enough to be seen. Nobody sees those other times because we’re too ill to even have those caring for us in the room. We need silence and solitude which means even those closest to us are shielded from the very worst moments.

My memory is a little hazy of the first 4 years or so, but specific things stand out.

I remember willing myself to lift fork to mouth and finally accepting that I needed someone to do that for me. I remember when I first began to use the stairlift and how much I fought to crawl up the stairs first, then being laughed at by a doctor when I said I’d had to start using it and feeling a rush of shame- how different to now where it’s just a part of my day and my key to the freedom of the outside world.

I remember telling my then-new, OT that I try and spend one day a week on the sofa instead of in bed, and yet I hadn’t managed that day for months (she saw through it).

I remember being picked up off the floor. Spending weeks in darkness and silence after a single hospital appointment. Stopping being able to swallow food. Feeling like I was going to die and was struggling to even expand my lungs to breathe after every weekly, or less frequent, bath or shower, but knowing to just relax into it and let it wash over me with no fear or stress or it would only prolong it. Getting an increase in symptoms for increasing the angle I spent the day laid at by about 5 degrees. Having to sacrifice the rest of the week for a friend to come and talk in 10 minute bursts with rest breaks in between, and trying to appear so much better than I actually was during those visits, leaving them with a totally false view of my reality.

Spending every day looking at a wall because facing the window, even with the curtains closed, was too much. Being too ill to use the stairlift and lay in the living room for 10 minutes without repercussions similar to having a bath. My parents faces as I grimaced with pain, covered in various cold packs and heat pads. Every noise outside (there’s a lot on a busy farm) searing through me, making me feel shaky and clammy and piercing my head. Unexpected visitors stealing the rest of the week from me. 30 seconds reading being the hardest thing I would do that day, making my heart rate spike to 160 bpm.

My gp looking at me with fear. My parents welling with tears at stories of others, some whose lives had been taken, who they could see myself reflected in. Their unmistakable joy and relief at any and every sign of improvement, and the fear that gripped them at every relapse or deterioration. The fear that still grips them when the ‘Severe’ moments resurface at times or they can see they’re just round the corner. The tentative way we’ve tried not to acknowledge I’m no longer in that category in case it doesn’t last. The way we hold onto hope but don’t make plans.

I remember the way no-one could ever really, truly, understand how it was and how we could say each day was full of smiles and laughter alongside it all unless they’d lived it 24/7. The way people would rather give you pity then move on with their life than even try and understand. The way you can experience temporary paralysis, be so weak you can’t speak or smile, but still have people think you are just a bit tired. Speaking, sitting up, eating, going to the bathroom, are all daily, non-negotiable things that you’re going to pay dearly for and yet you put yourself through them again, and again, but someone will still say you need more motivation or are afraid of exertion (if only they knew how much exertion just getting through each day takes with Severe M.E.).

I remember fully believing M.E. was jus a blip and would go away as quickly as it arrived, and so taking a photo from my window every day I was able to look out of it, to record the time I was missing from the world, for what was meant to be a year at the most but turned into 3 before my camera storage was full and I was no closer to living outside of that window.

Those are what I remember most, and the things no one else will see or know about if I lock them all into just a memory. They’re things thousands of others are going through now as I type this, and they deserve to be remembered, every day.

M.E. is a fluctuating illness, there’s no rhyme or reason most of the time. The level of functioning I have now may go tomorrow, but those firsts will never be firsts again. We’ll never be the rabbits in the headlights, scrambling around, wondering how someone can be so ill yet told they’re healthy. We’ll never have these experiences again, we’re used to it now, but someone else will. Maybe this will make them feel less alone, less like they’re the only ones struggling to adapt.

Or maybe it’ll prompt more compassion and empathy from someone on the outside looking in, who’s beginning to doubt what they cannot see.

If you’re living with Severe or Very Severe M.E., I see you. I’m not going to tell you it gets better, because I know we can’t control that, I’m just going to tell you you’re never forgotten, even if you feel like the world is turning without you.

3 thoughts on “Severe M.E. – The Hidden Monster

  1. Holly – thank you SO much for sharing. Of course none of us can even begin to imagine what any of this is like, but you have done such and eloquent job – honest and real in every way. You have opened my eyes today, and I’m sure for many others as well. I’m rooting for you, and whatever good days look like. Keep sharing your world with us – it’s so important!

    Liked by 1 person

  2. Hey, you give hope to others and maybe educate à few. Your strong and your gifted, surrounded by love and giving sharing your own freely.
    Neurological disorders are so brushed under the carpet, its wrong, all the people living with problems not yet labelled have to fight so hard, i will never understand why.
    Your love of life acceptance of who you are and gift for sharing that are spécial.
    Barely saw you but sending hugs my way of saying way to go girl. Keep living, laughing experiencing life. xxx


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