Simple tasks are no longer simple tasks. So please give yourself credit where credit is due. Making a cup of coffee is not one single thing anymore. It’s lots of little things that add up and each of those things requires something – energy, memory, concentration.
Let’s break it down:
•Walk to the kitchen •Lift kettle •Carry kettle across to the sink •Turn on tap •Hold kettle under running tap. It’s going to get heavier so brace yourself! •Turn off tap •Turn around and walk back with the kettle to the worktop •Put kettle down •Maybe have a breather •Switch kettle on •Leave room while it boils to avoid sensory overload from the noise •Come back into kitchen (you’ve only perched on the edge of the sofa waiting as sitting down properly might mean you struggle to get back up) •Open cupboard •Choose a mug •Lift it down onto the worktop •Remove coffee canister from cupboard…
Do you see? I could go on (we haven’t even had to pull the fridge door open yet!) but I actually fancy a coffee now and need to have enough in the tank to actually make one. This applies to everything we do pals. Everything. Eating, dressing, showering, housework, phone calls…
Go easy on yourselves. You are doing far more than you think you are. And I’m cheering you on through every single step.
It won’t lie. This has been the hardest birthday since the one where I turned 22 just three days after receiving my diagnosis. M.E. doesn’t care what day it is. It’s ever-present come rain or shine. Christmas, birthdays, weddings, funerals…
I’m back at the point where I can’t open my cards or presents without help. It doesn’t feel great. Even done at a snail’s pace, I’d gone a good few years of being able to physically open such things by myself. For those out of the loop, I’m experiencing my second ever Proper Relapse and am back to being very nearly as poorly as I was when I was first ill.
A birthday is Relapseville wasn’t what I’d have chosen, but it falling during Lockdown actually helped. I was too unwell to have any visitors, and that would have been very sad. But Lockdown removed that factor completely – no-one was allowed to come round. Every cloud has a silver lining!
All I really wanted out of the day was fresh air and to not have to wear dirty pyjamas. I got one out of two which in the circumstances is brilliant, I suppose.
I remained unwashed and in dirty pyjamas. I needed to rest in bed. I felt quite sad. Sad not to have been allowed some respite for just one day. And that is both okay and understandable. But I berated myself for not feeling grateful for what I do have; this husband of mine, our families, my friends and my unwavering support from my online cheer crew. And it wasn’t just that I felt a bit miserable, but also that I had no energy to be jolly. I think a lot of you here will understand that difference well.
I did try my best to remain open minded beforehand, and see what the day brought with it. But the chances of me waking up super ill were super high! There was no spare energy for excitement, and that is so unlike my birthday loving self. Dreading my birthday had nothing to do with lockdown and everything to do with this relapse.
It was just hard and sad. And not what I wanted it to be, that’s all.
I tried to see it as a day where people get to tell you they’re glad you were born. And that really helped actually. How lovely to have people who feel their lives are better because you’re a part of it.
As ever, Mr Tree Surgeon was exceptional. Holding me when I cried both happy and sad years, wrapping me in my ‘sleeping bag coat’ and wheeling my around the block in my pyjamas to see the Christmas lights down the street. They weren’t on. It seemed fitting somehow that the house usually renowned for being the best and brightest on the road was in darkness that day.
Birthdays during illness are complex. The pressure to be happy and excited… And if I think about this one too much I start crying again.
I’m hoping 32 is already giving me its worst, to get it out the way and allow for my year ahead to be on of easier times than this. I remain unwashed and in dirty pyjamas.
But in the meantime I’m surrounded by more cards than I can count. And eating more cake than is good for my immobile/sedentary waistline.
I had so many beautiful and thoughtful messages and presents and well wishes – so many people with an understanding that it was probably not going to a ‘Happy’ birthday this time.
Thank you to every single person who made it the best it could be. I cannot express how much of a difference you made that day, and every day.
I know. I totally know. This is not me on a downer. I don’t feel like I’m saying I am nothing but a person with chronic illness.
When I say I am defined by my illness, or something similar, in Real Life people are quick to contradict me. They often don’t see me only as ‘Anna with M.E.’ (which is good, because I’m not). But when I say these things out loud, they seem to think that that’s solely how I view myself.
I don’t. I’m Anna, wife of Mr Tree Surgeon, stay-at-home guinea pig mum, daughter, sister, cousin, aunty, friend…
But we can’t deny that my illhealth is one of the biggest things in my whole life. It has defined every single day for a decade. Not in a ‘Oh Woe Is Me’ way. Just in a “I can’t video call you today because I used my energy to brush my teeth” way.
Some days that sucks. But often it just Is.
I’m okay with that.
My chronic ill health actually makes up a huge part of my identity. I’m a ‘blogger’ who writes solely about their experience of life in the slow lane. I founded a fundraising event centred around my health condition. And while I no long call myself an M.E sufferer, instead now choosing “person with M.E” (note the difference language can make there) I see identifying a full-time poorly person as merely realistic.
So often it’s “You are so much more than your illness.” Well, yes. I’m not saying that. I’m saying you can’t deny that chronic illness impacts my life dramatically.
In all honesty, I am the person I am today largely because of facing chronic ill health for ten years. That is not automatically a bad or negative thing. I wouldn’t change who I am for the world.
Sorry to rain on anyone’s hashtag inspirational parade. Why can’t I live side by side with my illness, rather than constantly aiming to be above it… Why do I have to overcome it, or not admit to the impact it has.
My illness goes so far that it affects my personality. So often I don’t have the energy to be the upbeat person that I am. It’s still in there, very much so, but not in the ways it should be or would be without M.E. and the faulty energy supply that comes with it.
While I still might have similar interests (sport, crafting, reading) I’m not actually able to do those things. When you’re too unwell to even watch your favourite genre of film or read/listen to your favourite books, your sense of identity gets blurred.
I (subconsciously and consciously) always defined myself by what I could do. I know you ‘shouldn’t’ but it’s how a capitalist society works.
When your whole life has been altered by illness, and absolutely every aspect of it consumed by that illness, it seems impossible for your sense of self and sense of identity not to be impacted.
Absolutely everything post-university has been affected by my health from the things I eat and drink, to my hair styles, to what I can wear, to the friends I have, the hobbies I’ve had a go at… I never had the chance to meet the post-university Anna that should/would have been.
I often have no idea where the illness stops and Anna begins. Do I dislike X Y or Z, or is it just that I can’t tolerate those things anymore?
It’s perfectly okay and understandable that I am partly defined by it and that it influences such a large part of my identity.