Some links and articles about what it’s like to live with myalgic encephalomyelitis-
What it’s like to be sick-
This isn’t a whinge or bitch by any means so I really hope it doesn’t come across as one. I just wanted to try and illustrate what it’s like to be sick - how difficult menial tasks can be and why I so often cancel events or have to leave things early.
When you have a chronic illness such as ME, you feel lethargic and fatigued all the time; the severity varies but it never disappears all together. Sleep doesn’t leave you feeling refreshed and it can often be an impossible task to wake yourself up.
When I do wake up in the mornings I’m often hit with a bout of nausea which makes deciding what to eat difficult. I also generally feel very stiff and flat after waking and find interaction really difficult for an hour or two. After I’ve eaten and taken around 15 tablets in the morning, I generally won’t do anything else for a couple of hours, mostly due to pain and exhaustion.
When it hits the middle of the day I toss up whether it’s worth having a shower or not. I find showering very difficult because I’m heat sensitive and because sometimes just standing up for 10-20 mins can be really gruelling; I rely heavily on a shower seat most of the time. Showers leave me feeling very shaky and nauseous and overheated, and if I do choose to shower I generally need 30 mins or so to just rest afterwards.
Throughout the rest of the afternoon I’ll decide whether I feel able to take some photos or do some uni work or pop up the road to see a friend. Sometimes it’s a matter of just choosing to do one thing so that I don’t end up in too much pain or too exhausted or whatever else. Most people know I drive everywhere because walking for longer than 5 minutes is just too difficult. When I do walk anywhere I use a walking stick. Some days I’d absolutely love to see friends or go for a drive or do some uni work and it’s just not physically possible, so I end up spending the whole day in bed. It’s not me being lazy, it’s just sometimes all I’m able to do, and it often leaves me feeling really worthless.
If I do spend the day - or some of it - with friends, I’ll feel pretty drained afterwards. Just sitting and talking for a few hours can be very wearing when you rely so much on the comfort of your bed or your house. If I ever excuse myself or stop talking, I’m not trying to be rude, I just need a break. And while I truly appreciate people coming to visit or say hi, please understand sometimes I’ll only feel up to seeing you for 30 mins or an hour.
Symptoms often gets worse at night, particularly the pain, so I spend most of my night on the computer chatting and whatnot as a distraction. When the pain gets really bad, staring at a screen becomes too hard so I often don’t know what to do with myself - I want to distract myself from the pain but everything involves reading or watching.
My sleep pattern fluctuates all the time for various reasons - pain, nausea and sometimes just feeling depressed or lonely. When the fatigue is especially bad sometimes I do manage to get to bed early and get a decent night’s sleep, but if the pain or nausea are dominating, often they’ll keep me up until 3 or 4am. When I don’t get to sleep ‘til really late I often wake up very late the next day and as a result, am up late again that night. It develops into this terrible inverted sleep cycle. I find keeping a normal sleeping pattern very difficult at times and try really hard to maintain it. I’ve realised that despite that sleep doesn’t refresh me or make the fatigue much better, getting proper sleep really does help mood and sometimes symptoms.
Sometimes I have big outings like going to concerts or seeing musicals, which might seem like a contradiction to everything I’ve said, but I generally spend a few days preparing for these things. Then I spend the night and the morning beforehand battling with an internal conflict about whether or not to push myself to do these things, and whether or not the difficulty will be worth it. And if I do manage to have these outings, I then need around a week of recovery time. Occasionally being able to do these things doesn’t mean I’m faking it, or that I’m always going to be able to do them, it just means that I’m having a better symptom day or that I need to experience something other than the inside of my house for just a few hours.
Anyway, that’s just a rundown of a basic day for me. Most tasks or outings require a certain amount of thought and a lot of effort. Sometimes they’re not worth it because of the ultimate payback I’ll get in the coming days or weeks, and other times it is worth the pain to have a good time with friends. I spend a lot of time trying to prioritise and create a balance between things I want to do and things that are sensible to do.
I hope that makes it slightly easier to understand.