March 2020 COVID hit and so did all these weird symptoms I began experiencing. It’s not and has nothing to do with COVID, I’ve been checked, don’t worry, it’s just a very random coincidence.
To begin with it wasn’t too bad, it was happening once a month, I was just really tired. I’d go for more naps than usual during a week. At the beginning I was putting it down to my chronic fatigue flaring a bit more often. But then as the months went on it warped into something else.
I go to sleep at around 3am (because that’s my bedtime), wake up the next day but not wake up properly. I can’t move my limbs, they feel like they’re weighed down with something far heavier than my duvet, they don’t hurt (no more than usual) but they are so weak. I can barely lift my head from my pillow, it’s heavy. My eyes won’t open properly, my mouth is sagging, the muscles in my face are failing. Then I try to speak and what comes out isn’t words, or it is words but they’re not a proper sentence, I’m slurring, I’m talking gibberish. I need the toilet so I call for my boyfriend and he has to get me out of bed, he lifts my arms around his neck and attempts to manoeuvre my gelatinous body the few steps to the bathroom. I stumble, I fall into him, my legs give way. I look like I’ve had far too many vodkas but I don’t drink. I get to the bathroom and immediately fall asleep on the toilet.
Then it’s the trek (it’s literally five steps away) back to the bedroom. I fall asleep as he’s moving me. I’m asleep before my body is in the bed. I fall onto the bed, my boyfriend lifts my legs, covers me up and I’m not there. I’m too tired, too weak, asleep. But I need my medication. Ian used to give me box they’re in and I’d take them alone but now just puts them in my mouth because my proprioception is failing and I can’t get my hand to my face without dropping them. Then he holds the straw from my cup up to my face and I sip, I choke, I sip again and swallow.
And the cycle continues, every time I need a wee or every time he wakes me up to take my meds. I sleep for over 32 hours. I slept for 40 hours the other day. I don’t eat, I barely drink. I just sleep.
This happens two-three times a week now and it has been happening for the last seven months, resulting in my being bed-bound all that time. I’ve been into my living room to use my printer or to get a new book off a shelf but I live in bed.
The days that I am awake, I have no energy, like, the sleep I had for all those hours did nothing, it certainly didn’t energise me. I’m wobbly, I can barely focus. And then if I overdo it, the big sleep starts creeping in. My left eye starts to shut, my face feels like it’s slipping off, my mouth becomes slack. I thought I was having a stroke the first time I noticed it but it’s my muscles telling me to slow down.
Last time I visited my parents, I got up one morning, sat at the dining room table, like I always do, and chatted to my mum. After a few minutes my words started slurring and then I fell asleep with my head on the table. My boyfriend got me to bed and I was out of it until the next afternoon.
Luckily, I got to witness my best friends getting married in September though, I was so worried I would have this weird sleep flare but it didn’t happen on that day. It did a day later but I was just so relieved I saw them tie the knot and have a beautiful day. And other than hospital appointments, that’s the last time I went out. I haven’t been able to drive my car or pop to the shops. I’m always at home.
I saw a neurologist last year that tested me for MS (multiple sclerosis) but when my MRI was clear he didn’t seem to care about anything else or want to investigate further so discharged me. I was heartbroken as I just want answers. I am due to see a new neurologist at the end of this month and I can’t wait, I just hope they listen and take me seriously as whatever this is is massively affecting my life.
I want a name for this thing, I want to know if there is treatment or if I’ll live the rest of my life like this. I just want to know. I’m not sure what I’ll do if they tell me there’s no treatment or they don’t know what it is.
It’s not just tiredness, I’m not lucky to get so much sleep, you wouldn’t want to spend all your time in bed. What I’m dealing with at the moment is incredibly isolating, I am losing so many days to sleep and even the simplest things eat up so much energy.
I have taken three breaks writing this piece and my eyes have glazed over, my left eye has decided it doesn’t want to work anymore and my jaw muscles are hurting due to the mouth sag, so I think it’s about time I wrap things up.
Hopefully my new consultant is amazing, wish me luck!