A day in the life of M.E.

It’s 6am and I’ve been rudely woken up by the torrent of wind and rain that’s bashing the coastline, again. Wait for it, wait for it, there it is; a feeling that is now all too familiar. Pain. It’s an intense, hot, muscular pain that chews away at my thighs pretty much 24/7 now. Oh dear. I need to go to the bathroom. It’s still dark and I know turning on the bedside lamp will split my head open, so I use my phone as a torch. I could find my way in the dark but I’m always worried that one day I’ll step on Lily. I can barely walk straight and everything is so fuzzy. It’s cold. This really hurts but I can hardly try to go back to sleep with a full bladder!

I stumble back to bed and toss and turn until 9am when I finally give up and haul myself out of bed to give Lily her breakfast, open the curtains and make myself a coffee. Yes, caffeine is a bad idea but I rarely finish a mug anyway. I tend to make a mug of hot Ribena as well now, sugar free, as that saves some energy of getting up from the sofa where I will now spend the rest of my waking hours. I take my medication before I forget; 80mg SR propranolol and 10mg buspirone. I need to get dressed. I’ll swap my David and Goliath glow-in-the-dark cookie trousers for my black sweatpants, and throw on my boyfriends’ university hoodie. That’ll do.

There’s a big pillow on top of my cushions, and a lightweight duvet so I’m pretty comfy once they’re all arranged properly. I’ve attached my TENS machine to my legs so I feel a bit like a robot but it really helps take the edge off the searing pain. It’s a bizarre sensation but I’m gradually getting used to it. My laptop is plugged in and the TV remotes are in reach, not that there’s ever much on.

I always check Groupon on my phone. Today there was an offer for Pyrex bowls, 3 for £7.99, and a roasting tray with rack for £12.99. I got them both.

I already feel worse than when I woke up. The fog is setting in. The laptop is on the lowest ‘brightness’ setting but it’s still melting my eyes. I can’t tolerate the music on the radio anymore, so I’ll switch to binaural beats on Spotify. I just want to sleep. You know that feeling when you’ve done a days’ work and your evening activities, it gets to around 10-11pm and you can feel yourself falling asleep? It’s like that. But I’ve slept for around 7 hours and all I’ve done is basically get out of bed and do the most simple of tasks.

It’s 11am now and I’ve finished both my drinks, so now my next job is to make up a 1.5ltr bottle of squash to keep on the table and make my breakfast. I am insanely tired and the thought of trying to eat solid food is horrible, so strawberry complan it is. I make it with hot water so it’s quite comforting and filling too.

Oh god. I’m stuck on the sofa. My muscles don’t have the energy or strength to make my body sit up. I feel sick. I hate this. There’s no-one here to help me, not that I want help, but being on your own with this gets old pretty quickly. Don’t cry. That’s energy. Do. Not. Cry.

11.30am. Still stuck and it’s war inside my head. My brain tells my body to get up, but there’s no reply. So it screams louder, and louder. Anxiety and depression chime in around now and won’t shut up until I fall asleep. I need to force myself up somehow. It won’t be long before my Abel and Cole order arrives. GET. UP.

12.30pm. Abel and Cole arrived. I do love that my driver seems to come at the same sort of time every week. It gives me time to prepare. Getting up from the sofa in a semi-sleep state, making it down the stairs while the world is spinning, and carrying boxes back up is without a doubt, the hardest part of my day. It’s also the happiest, Lily cuddles aside. Every week I get something different and it just feels special. This week I got some free natural yogurt! I think I’ll do a separate post on why I think Abel and Cole are epic. Luckily the postman arrived at the same time so I only had to make one visit to my staircase, so far. I’m back on the sofa now, lying down with Lily curled up on my lap, purring away. I can feel myself slipping into the darkness… 


3pm. This is where ‘real life’ and this ****ing disease clash. I have to look after my boyfriends’ mums’ house for the next 10 days. It’s only down the road, 30 minutes round trip. Easy, right? If only. I couldn’t say no, but I knew doing that trip every day would be disaster. But how can I explain that? Because I’m having such a hard time today, I’ve resorted to texting my mum to drive me. Pathetic, but what other option do I have? If she says no, I’ll have no other choice but to use my crutches and just kick myself through it. On Friday this left me stuck on my stairs, too exhausted to make it all the way up. I HATE THIS.

4.30pm. Thankfully she came, and she’ll help me out tomorrow as well. All I need to do tonight is gather up my favourite pictures of Lily for her. Not too taxing… It’s all about give and take though isn’t it. Hopefully the cakes and cherries I gave her will help too! Feeling very teary and jittery. My flat is a mess, it needs cleaning. Really need to fight that urge. I need to rest.

9pm. My day is over. I can’t say I’m anything other than relieved that I’ll be in bed by 10.30pm and hopefully asleep by midnight. It’s not windy or raining tonight so hopefully there won’t be any disturbances that keep waking me up. My sleep hygiene routine is almost rigid. It has to be. I’ve done too much today, again. I feel so worn down and I just want to scream and cry. I don’t think I’m getting across just how awful it is to live like this, but frankly I don’t have the brain power to be so descriptive/emotive.

Anyway. There’s some insight into one aspect of my life. This is REAL. It is not psychosomatic. It is not malingering. It is not depression. Trust me, this feels very different to that. If it were up to me I'd be at university right now.

That very fact is crushing.

1 comment

  1. you'll be at uni soon enough. just take care of yourself and everything else will fall into place. thanks for sharing all this and i look forward to more! x


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