I wake up, roll over, open my eyes. It’s still dark, what time is it? Oh, it’s 1am. Great.

I roll over and try and get back to sleep. OW. Shouldn’t have rolled onto that shoulder. I try and adjust position. OOOWWW. Definitely not that side.

I wake up again, it’s still dark. What time is it? 4.42am. I feel really awake, so grab my phone and have a look at the emails and messages that have come through since I crashed out last night around 9.30pm, so exhausted that even staying awake that late was a struggle.

It seems that I managed to get back to sleep for a while. I roll over again and look at my phone, and it’s 6.40am. My alarm is set to go off at 7am, although it would be a stupid idea to try and doze for a while, I can’t help it, I’m so exhausted.

My alarm goes off; yep, I’d started to fall asleep again. I turn the alarm off, snooze a few more minutes, and eventually roll over to remove my bite guard, designed to stop me destroying my teeth when my jaw part-dislocates in the night. My teeth and jaw hurt, I must have subluxed anyway. Still, I guess the pain is at least better than shattering a tooth (which I have done), or wearing them away prematurely.

I stand up, take 3 steps to the door and put on my robe, then nearly black out and have to lean against the wall for a while.

Hm, my wrist hurts, and the joints in my fingers too. I feel shaky, is that a hangover from my pain meds before bed, or withdrawal from them because I need my morning dose?

As I put on my robe, my left shoulder makes that all-too-familiar thunk, oh, that’s back in its proper place now at least.

I carefully measure out the dose of the strong laxative I’m on at the moment (Picolax). Although I’m meant to take it at night, I can’t; the painful cramps it induces as it’s working stop me from sleeping, so I take it first thing in the day instead. I still experience the same painful cramps, but at least this way it’s one less thing to potentially disturb my sleep.

I think I can probably manage to jump in the shower. The heat might help ease my various achy joints, though of course there’s always the risk the heat will make me feel like passing out.

Thankfully today it doesn’t, and freshly towelled off I wobble my way to the kitchen, make a coffee and retreat with it to bed. After climbing in to bed, I hear my flatmate’s cats fighting in the lounge. One of the neighbourhood cats must have got in again. I almost certainly can’t get up and get to them in time without likely nearly blacking out again. I’ll just have to let them fight it out.

I take my other morning meds now. It’s a fistful of pills; VitaminE to help my eczema, iron/VitC/B12 to help stave off the worst of my anaemia, magnesium to try and ease the random muscle spams and twitching, VitaminD because I don’t get outside a lot at the moment so am not getting much naturally, and of course my pain meds.

I gulp it all down with my coffee. Has anything got stuck in my throat today? No. That’s a nice change.

I’m working at home at the moment, mainly because of the stomach/gastrointestinal problems I’m having — because I can’t eat large meals, I’m nearly permanently undernourished, and the laxatives are so strong that when they kick in (at an unpredictable amount of time after taking them) I can’t be more than a few feet away from a bathroom, often for several hours.

8.20am, the front door goes. Can I jump out of bed, put on my robe and answer it in time, and without nearly blacking out? Thankfully, I can today. That’s good, I don’t want to put our poor postman in an awkward position!

Parcels for me, for a change. Some soap I ordered online that’s meant to be good for delicate skin, and a jumper from eBay, hopefully to keep me warmer than I’ve been recently.

My circulation has been horrendous this winter. I’ve never been as cold as I have recently, sometimes wearing four or five layers on top, with two pairs of socks, and yet still winding up with feet so cold they feel like they’re burning, and the rest of me being cold, shivery, and with intermittently blue fingernails when the Raynaud’s really gets going.

9am, time for breakfast now, I’m stupidly shaky and I suspect it’s partly due to low blood sugar etc. Because my GI system is so messed up at the moment, I have to be really careful about what I eat and can’t eat large meals either. Last night before going to bed, I prepped my breakfast and put some oats and flaxseed in with some yogurt to soak, so that when I came to eat it this morning it’d be nice and soft and hopefully be fairly easy to digest.

The nice soft oats and yogurt are certainly easy to eat, but how will they sit in my stomach? Will I have nausea today? Will I have painful stomach cramps? I guess I’ll find out soon enough.

9.35am and I’m curled up on my bed, cold, shivery and with painful stomach cramps. Is it one of my meds doing this to me? Is it just a bad EDS day? Or is my body rebelling because I did something as simple as put food in it?

I can’t find the answer to any of these questions, of course. So I’m stuck riding this out for however long that might be.

I am So Tired. In spite of going to sleep around 9.30pm last night. All I want to do is crawl back into bed and rest, but I can’t do that, I have to be working today, learning, and earning my keep.

I’m doing all this on my own (having recently become divorced) so there’s no one to help support me if I need it, which means if I want food, or clean clothes, or a clean room, or any of those normal daily chores doing, I have to somehow find a way to do them myself else they don’t get done.

I need more coffee before I start trying to work, so head to the kitchen, grab another coffee and head back to my room. I have a desk set up here, which I sit at most of the time, but today I’m feeling sufficiently achy that I grab my work laptop and climb back onto my bed to work there, propped up with plenty of pillows and cushions.

I’m so grateful to have a job where I can work from home, especially on days like this. It’s so frustrating because I know there was once a time where I felt, compared to now, invincible. In my early 20s, I worked on cross-channel ferries, spending 12hrs at a time rushing around serving food or drinks, or cleaning, or serving in a shop. Now.. I struggle to remember what a day without pain or brain fog or any of the other problems I’m plagued by feels like.

12.34pm and the stomach cramps start. I dash to the bathroom, but it seems this is nothing more than cramping. Afterwards, I go make myself a small snack; even though I’ll have lunch in an hour or so I need to make sure I snack as well given how tiny my meals are at the moment.

1pm. In spite of already wearing thick winter socks, heavy jeans, a vest, t-shirt and jumper, I’m cold, so I throw on a hoodie as well. I notice that my hands are pretty white and my right-hand ring fingernail is blue, again.

Back to trying to concentrate on work. I’m supposed to be learning at the moment, and I’m finding it really difficult right now because the exhaustion and cramps in particular make it really hard to concentrate.

1.25pm, ooh, my pinky finger just dislocated. Damnit. That’s going to make typing tricky for a bit, guess it’s back to two-finger typing rather than touchtyping for a bit.

Ok, it’s 1.50pm, time for lunch. I’m keeping my meals really simple at the moment, so I have a few boiled baby potatoes with some spinach and mushrooms, and a tiny bit of ham and cheese on top.

Almost immediately, my stomach starts cramping and I wonder if I have time to finish eating my food while it’s still warm before I have to rush to the bathroom? I can’t eat any faster, so I have to hope the cramps abate for long enough.

2.37pm. Cramps, nausea, dizziness. Yet again, my body seems to be rebelling because I put food in it. I feel like I’m going to be sick, and know that I’m dizzy enough that if I have to get up in a hurry I’ll be in trouble. Time to lay down for a little while and hope the worst of this shoves off in a hurry.

4.02pm — the cramps have gone and I’m just left with nausea and dizziness. I’m struggling to focus on my computer to work.

4.59pm. Well, the laxatives have worked today, though they cost me half an hour in the bathroom and I still feel dizzy and nauseous. At least I’ll hopefully get a reprieve from the cramps now.

I really wanted to go to the shops this afternoon to get a couple of things, but I think that’s going to have to wait for another day instead, aside from how dizzy I still feel, I’ve got work time to catch up on due to what I’ve lost from having to stop for a while earlier and being tied up in the bathroom for so long. My employer is already generously letting me work from home as much as I need, and I’m scared to take too much additional time out as the last thing I want is for them to start to think I’m taking advantage.

I’m really grateful that so much of my life can be done online. I can work, order my groceries, shop and even request my repeat prescriptions online. Little things like these which might seem like frivolities to more able-bodied people are an absolute lifeline for me.

I add the things I need to buy from the shops to my list on my whiteboard; then all I need to do when I go out is snap a photo of it before I leave. No pieces of paper to risk losing.

I keep a 750ml canteen of juice drink on my nightstand, so that I don’t have to keep running around every time I need a drink. It’s empty now so, getting up slowly again, I head to the kitchen for a refill.

Back at my desk, I try and get some more work done, but it’s hard to focus. At 6pm I finally give up, and go and make my supper; just a couple of pieces of buttered toast with some cheese.

I can give in to the aches, cramps, fog and pain at last now, though I don’t get much of an evening to enjoy or relax in — I’m usually so exhausted that it’s often a struggle to stay awake much beyond 8.30–9pm. One of my nightly meds is an antidepressant which also makes me feel sleepy and groggy, and if I don’t take it early enough in the evening, the hangover from it in the morning makes me horrendously incompetent for longer than I can afford.

I eat way more sweets and chocolate than I should, but it’s one of the few things that gives me a good energy boost and is relatively easy to digest. Sometimes I really worry about what I’m causing long-term damage to, but it’s hard to make that tradeoff for something which is one of the few things that’s a benefit to me at the moment.

7.37pm. Noisy upstairs neighbours are home. I hope they’re quiet later, I could really do with a semi-decent nights sleep.

8pm. My alarm for my evening meds goes off and I only just realise that I’ve missed the lunchtime dose of my pain med. That probably hasn’t done me any favours but there’s nothing to be done about it now.

As exhausted as I am, I’m relieved that it’s only an hour or so until bedtime, but it’s a bittersweet relief as the cycle just starts all over again tomorrow, and the next day, and the day after that.

I climb under my sheets to watch something else and get warm, and as I do I hear my upstairs neighbours going out — the thought of going out at this time of day is anathema to me, and I’m left wondering quite when it was that I got so old…