Some links and articles about what it’s like to live with myalgic encephalomyelitis and my experiences with it-
What it’s like to be sick-
This is my attempt at illustrating what it’s like to be sick and how even the most menial of tasks can be incredibly difficult for someone with a chronic illness. It’s not intended to be a complaint but rather an insight into life with Myalgic Encephalomyelitis.
For the past 9 years I’ve felt lethargic and fatigued constantly; the severity varies but it never disappears all together. Sleep doesn’t leave me feeling refreshed and it can often be an impossible task to wake myself up.
When I do wake up in the mornings (or afternoons, as the case may be) 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, I may have a dull headache, and I find interaction really difficult for an hour or two. After I’ve eaten and taken around 20 tablets in the morning, I generally won’t do anything else for a couple of hours, mostly due to pain and a complete lack of energy.
When it hits the middle of the day I weigh up whether it’s worth having a shower or not. I find showering incredibly 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, nauseous and overheated, and if I do choose to shower I generally need 30 mins or so to just recover afterwards.
Throughout the rest of the afternoon I’ll decide whether I feel able to take some photos or do some uni work or head 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 a couple of 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 from a conversation 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, I need them to understand that sometimes I’ll only feel up to seeing them for 30 mins or an hour.
My symptoms often get worse at night, particularly the pain-related ones, so I spend most of the evening on the computer chatting and watching things as a distraction. When the pain gets unbearably bad, staring at a screen becomes too difficult 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 a healthy one. I’ve realised that despite that sleep doesn’t refresh me or make the fatigue much better, getting proper sleep really does help my mood and sometimes my symptoms.
Occasionally I have big outings like going to concerts or seeing friends in the city, which might seem like a contradiction to everything I’ve said above, but I generally spend a week or more preparing for these things. I’ll then spend the night and the morning beforehand battling with an internal conflict over whether or not to push myself to do these things, and whether or not the effort will be worth it. And if I do manage to have these outings, I then need 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 a few hours.
Anyway, that’s just the gist of everyday life 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.
I’d also like to take this opportunity to clear up something; ME (or Chronic Fatigue Syndrome as it’s so often misleadingly called) is not a case of simple fatigue and it’s nothing like having a common cold. It’s a serious neurological illness that affects all of your bodily systems and functions. To give an idea of the severity of ME, here is a brief rundown of some of my most common symptoms-
- Orthostatic intolerance
- Light sensitivity
- Heat sensitivity
- Noise sensitivity
- Faintness and dizziness
- Low blood pressure
- Joint pain
- Muscular pain
- Flushing and temperature irregularities
- Hypersensitivity to touch
- Gluten intolerance
- IBS and other gut problems
- Muscle weakness
- Depression and anxiety
People who suffer from ME deal with a huge range of symptoms on a day-to-day basis, most of which are invisible. It’s a devastating and isolating illness that steals people’s lives away. It needs to be met with kindness, understanding and compassion.