I hate these days. If you’re healthy, you might think a day lounging round in your PJs watching Netflix sounds great, but to me, it’s a regular occurrence and stops me from doing even basic things I want to do. Even things like showering, for example.
I’ve given these names to these days myself. So a rest day is where I don’t do anything outside the house unless I absolutely have to (medical appointments being the only exception). I won’t have a shower, I’ll stay in my PJs and I’ll do as little as possible. I might write an easy blog on my phone (like this one, where I just type and little thought goes into it) or do something like colouring or knitting from time to time, but I spend most of the time lying down- sitting up activities are limited because sitting up requires energy. I’ll extend my afternoon nap and maybe have a nap in the morning as well, depending on how much of a rest day I need. This is how I spend most of my week. It’s boring but necessary. Over Christmas, I made the mistake in thinking I could talk while lying down on a rest day while my parents were here. Nope, talking was too much effort, so I needed a sleep day the next day. Today is a rest day because I went to three medical appointments yesterday and it was too much in one day- but it’s not too bad a day for a rest day :).
A sleep day, unsurprisingly, is where I sleep almost all day (like 21 hours out of 24). I pretty much get woken up for tablets and meals and maybe watch a little bit of TV. It’s not a ‘I’m tired, I think I’ll have a nap now’ kind of sleep, it’s a ‘if I don’t sleep right now I think I might die’ sleep. I basically pass out. My husband sometimes can shake me for minutes at a time trying to wake me up and I won’t wake up. For days when I’m by myself, I’ve now got an app on my phone which tells me when to take my tablets and alarms go off until I tell it i’ve take them, or it alerts my husband on his phone. Because my pills are really time sensitive and keep me alive, if I miss a dose because I’m not able to wake up, it’s actually pretty dangerous, so my husband would ring or come home to make sure I take them. Except I once went out with a friend and forgot to tell my phone that I’d had them, and my husband tried ringing me and my friend to make sure I was still alive…. oops!
Most days, I wake up and it takes me an hour to be able to sit up in bed, firstly because I can’t keep awake, secondly because I haven’t got the energy to be able to sit up. I’ve got lots of alarms for this bit too! Then I get up and sit at the top of the stairs for a rest before going down them, because I don’t have coordination on bad days and I can’t actually work out where the stairs are in relation to where I put my feet. If my husband’s there, I sometimes get him to walk in front of me to make sure I don’t fall down. Once I eventually get downstairs, I swallow my tablets (there are some in my bedroom in case I can’t get that far) and about 20 minutes later try to get breakfast. I really, really hate the process because it kind of feels like I died overnight and got revived, and I feel like I’ve been hit by a bus. The only thing which makes this whole process bearable is the fact that I’ve got a friend who gets up with her baby around the same time, so I usually talk to her via message. It always cheers me up no matter what I wake up feeling like. I have to get up and eat and have my medications by 8.30am at the latest, but once I’ve done that, I’ll go back to sleep until my next dose at 12.30 on a sleep day or I’ll lie down on the sofa and doze on a rest day. On ‘good’ days, I’ll do something like watch TV and colour or knit.
It feels a bit like I’m sleeping my life away, which is why I hate it so much, particularly at the moment as I seem to be going through a ‘what am I doing with my life?’ phase. (Answers on a postcard please). But, if I don’t sleep or rest when I need to, I could die (by way of adrenal crisis) because I haven’t been asleep or rested for enough time and I’ve run out of cortisol. No matter how hard you try, it’s incredibly difficult to live a fulfilling life from your living room in your PJs. It’s not an illness I’ll get better from, either, which makes it more tricky for me to deal with mentally- there’s no ‘end date’, just a vague ‘let’s hope we can get it stable so things might improve’. So on days when I’m alone by myself having to take forced rest, it’s really hard not to be critical and negative about yourself, which is exhausting in itself, let alone when you add it to the other symptoms. For most people, distracting yourself would be a coping mechanism, but I can’t distract myself on these days because it’d burn the energy I’m trying to conserve which is why I’m resting in the first place.
My chats with my friend via message, texting people, Netflix and social media are my lifeline. Or things I can do on my phone while lying down which don’t require too much brainpower. If I have to be cut off from the world physically, at least I can talk to people virtually while I’m doing it and don’t feel quite so isolated.
It’s time for my afternoon nap now 😉