I’ve never really shared this with anyone, but I’d like to lay out what a day in the life of a person with M.E. CFS might look like. This is what my day looked like while I was recovering from M.E./CFS (as I mention here, these terms have become a bit blurry over the years!).
I’m not doing this so you can compare yourself with me, whether you’re doing better or worse, but more to show you that there is hope and that ultimately, progress is progress. Please don’t compare yourself to where I was, or what you think ‘70%’ should look like- this is simply a guide designed to help. It’s also quite a rough guide. I think you can fill in the blanks yourself.
You are also invited so share this post or page with anyone you think might benefit from understanding a little bit more about the condition (there are also articles that might help them here and here). I am in no way making the accounts more dramatic, or worse than it actually was. This is how it really played out.
Let’s take a little look…
CFS at 5% ability (being cared for completely by my parents)
Sleep: 21-22 hours a day
Going to sleep at: ?
CFS at 10% ability (not much better)
Sleep: 20 hours a day
Going to sleep at: ?
CFS at 20% ability (trying to sit up in bed with little success)
Sleep: 19 hours a day
Going to sleep at: ?
Memories: trying to eat mushy toast with honey and feeling sick, vague memories of trips to the doctors where everyone else had to speak for me.
CFS at 30% ability (sitting up in bed for around 10 seconds before lying down again)
Sleep: 18-19 hours a day
Going to sleep at: 4am (possibly, not entirely sure)
Memories: managing to eat a whole slice of toast and drink some tea without feeling awful. There is some talk of going for a walk, although I can’t remember if we managed it or not (probably not).
CFS at 40% ability (sleeping less, but dealing with complicated symptoms)
Sleep: 17-18 hours a day
Going to sleep at: 4am, waking up at midday, then back to sleep again.
Memories: going to the supermarket with my parents, feeling sick with all the lights, noise and crowds (wanting to get out as quickly as possible).
CFS at 50% ability (on my way?)
Sleep: 17 hours a day
Going to sleep at: 2am- is this progress?
Memories: attempting to play Mahjong on the computer when propped up with enough pillows and realising this was a good way to spend the early hours of the morning.
CFS at 60% ability (attempting to leave the house)
Sleep: 16 hours
Going to sleep at: a more ‘human time’- 1am/2am.
Memories: being exhausted and having to have a 3-hour nap after my Mum takes my shopping. It is one of the most confronting experiences of my life, and I’ve often been in this situation, got in the car, and already felt as though it was too much.
CFS at 70% ability (wanting to leave the house more regularly)
Sleep: 14-15 hours a day
Going to sleep at: midnight, sleeping on and off (constantly tired even when awake)
Memories: headaches; still having trouble with lights. I still don’t find myself saying that much- it’s all quite overwhelming, as I’m starting move back into life again.
CFS at 80% ability (getting back into normal life)
Sleep: 12-13 hours a day
Going to sleep at: 11pm-ish, but the insomnia is terrible. Waking up every half hour.
Memories: less persistent headaches; wanting to eat more; terrible anxiety, but able to hold down a part-time job- just! (2 days a week in a photocopy room).
CFS at 90% ability (a bit of a danger zone)
Sleep: 10-11 hours a day
Going to sleep at: 10.30pm, but still have some insomnia.
Memories: no more headaches, functioning ‘normally’ with daily tasks without feeling overwhelmed.
CFS at 100% ability
I have to admit, the gulf between 90% and 100% is a little bit blurry, but once I realised I could work full-time and symptom-free after a few years, I knew I’d got there. This is one of the most dangerous times for relapses, as the temptation to push yourself and declare yourself well and healed is always there.
The above obviously doesn’t take into account relapses, and the road to healing definitely isn’t as smooth as I made it out to be here. But I hope that this might help you explain you situation with others and that you might be able to find some hope in it.
Love and one-day-at-a-time,
I love your day in the life….Since I haven’t started my ME/CFS journal yet – I am still in denial – I decided, as an experiment, to write down an “off” day. I am coming out of a major crash from starting back on raw juices – yay! and then thinking I would use my extra energy to run a 5k – Boo. I work 6-7 days a week tutoring and helping to run my family’s alternative health center. I am trying to figure out how to scale back so that I am only tutoring. Basically, I feel like I am functioning with lead for blood under 100 feet of water. I am struggling with many moments of disappointment and self pity and reveling in the moments of awareness, acceptance, and the support I feel from your site.
Here is the “off” day that I gave myself yesterday:
Awoke at 6:30 after a night of 8 hours of intermittent sleep (I had driven for 5 hours and attended a 6 hour class the previous day)
Make tea, turn on Netflix, check email, pay bills, prepare lessons, make juice, make tea.
Continue lessons, make tea, read Conquering Fear Spiritually – get caught up in following article to article! – help my husband move a refrigerator (I hide when he is doing a project but he found me)
Make tea, doze for 20 minutes, check email, call daughter, do dishes, meditate for 12 minutes
Do 20 crunches,10 squats and 10 baby push ups, everything looks black for a few moments and my heart pounds even though this took literally less than 2 minutes
Make tea, work on my class assignments for my master’s degree, go on facebook to support a woman who is shaving her hair to support children with cancer – get caught up on facebook, do 2 loads of laundry (sans folding), make tea, continue lessons.
Make tea, eat raw hazel nuts with coconut oil and sea salt, make 8 word lists and 3 posters for my tutoring room.
Suddenly it is 8:30 pm and I realize I have neither gone outside nor rested my mind or body for 14 hours.
This is crazy, no wonder I feel like I am in hell.
I guess I’ll start that journal…
Thanks all for listening to this rather embarrassing confessional
Thank you for sharing with us, Linda. You are worthy of rest and relaxation- your body and mind need time out, especially with so much going on. Lots of love, Katie xx
I was wondering what you did about the terrible anxiety. I have it and it’s really making it hard.