A Day in the Life with ME/CFS

edited repost from Nov 23

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Hello Red Cabbage Heads

How is the world with my fellow chronics? For the new people I have ME (myalgic encephalomyelitis) often know as CFS (chronic fatigue syndrome). I’ve been living with this disease for 15+ years now, possibly much, much longer.

This is a post that I first put up on here on 23rd November 2025. I had a total of 3 subscribers then (family), I’ve just hit 250 so it’s time for a gentle repost. If you have read this one before please feel free to scroll on by as it has only minor changes.

Dear Red Cabbage Heads,

I was diagnosed with ME/CFS in December 2012 after at least 2 bad years anmd 2 years of battling drs for a diagnosis (if diagnoses within 6 months the chances of a full recovery are greatly improved - basically no one gets diagnosed that quickly atm as the drs seem to resist accepting ME/CFS as real. There were at least 5 years before that of gradually physically sliding downwards after a 2nd bout of Glandular Fever (Epstein Barr virus). The doctors ignored my concerns for that long. Looking back I realise I was never fully right/recovered after my first bout of EBV at the age of 18. This 2nd bout was followed by Swine flu a few years later and the huge slide began. My body can’t cope anymore and all my coping strategies no longer work. I felt awful and nothing helped, no matter how hard I tried to push through, to increase my fitness levels, to think myself better - all things the drs recommend - I just continued to get worse. I am now doing yet another ME/CFS course as I deteriorated further after consecutive COVID infections last year. In 12 years and 3 other courses along the way I can tell you nothing has changed. Despite new nice guidelines they are still pushing graded exercise therapy (GET) but calling it ‘staircasing’ and offering CBT. This is against the NICE guidelines. There is a lot more but I won’t go into that here. Suffice to say I’m really disappointed and am only doing the course to get access to the specialist physio appt the end of the course (I’m not holding out much hope that they will be much better though.)

I first wrote this piece back in May 2020, during lockdown when every one was making a such big fuss about what they could not do. And I took umbrage, they did not understand about life’s restrictions, about how I lived lockdown everyday for years with no end in sight. It took days to write. My health has been a very little better and also worse since. It’s an ever fluctuating disease, but I doubt I will ever be ‘better’; there is no cure. My mind set is very important to help me through. This neverending-ness of chronic illness take some getting used to but I think I’ve cracked it now. Anyhow, the piece….

I wake, after one of my better nights, (awake a few times but no long hours of insomnia) it’s 10:20 am, and immediately I want to sleep for another 12 hours at least. Despite trying not to, I do a quick body check to see if I’ve been miraculously cured overnight. Ow, nope, not today. Gently I stretch, and slowly, to avoid fainting when sitting up, make my way for a morning widdle. Back to bed. R arrives and brings me a up of tea. I sit up again and quietly sup whilst the sun streams in. It’s going to be another nice day. A bit of scrolling on the old social media, trying not to bite or get riled as that winds me up and uses precious energy. Today I get pulled in by a body positive post, sorry I can’t accept that everyone HAS to be body positive no matter what. Precious energy is wasted. Eventually at about 11:30am I manage to get up and get dressed. I accidentally put on a dirty T shirt and don’t have the energy to change it. Maybe later. Maybe not. My plan for my one proper activity today was to wash my hair. I look at it in the mirror, it’s a tangled mess. I have three choices. Refresh it (curly girl method for those that don’t know about this), wash it, or stick it in a pony tail and deal with it on a higher energy day. A pony tail it is.

Downstairs breakfast is nearly ready and I sit and wait. I don’t have the energy to cook the cloud bread I was planning for this morning so Ralph makes our normal fry up. I feel guilty as he was looking forward to it. He tells me not to be silly. It helps, but only a little.

I’m shattered. I’ve been ‘up’ for two hours and done nothing other than get dressed and I’m really ready for the day to end. My eyelids are SO heavy. Breathing is hard (not Covid, a normal ME symptom), it’s called air hunger and I need to concentrate to make sure I keep sucking and expelling the air into and out of my body, it’s no longer automatic. Now sat on the sofa, I look at the glorious day out of the window and wonder if I will get outside today. I may make myself, but then tomorrow I will feel worse. I check the weather report. It’s okay, sun is forecast for the next few days so I don’t need to make the most of the weather today. I can go out if I feel like it not because I think I should before the weather breaks.

A random thought enters my head, did I take my pills this morning? I struggle to remember. It’s a blank. This is not simple forgetting, it’s like there is hole in my memory as though time doesn’t exist. It’s not fuzzy, it’s completely blank. Slowly I rerun the morning in my head and disjointed as the reconstructed memories are I finally decide I probably did. Thinking of pills, I realise how much I am hurting. Do I push through? Or give in? Giving in requires moving, using energy to fetch said pills. I weigh up how much energy will used for fetching and taking pills, or staying sat and coping.

I stay sat for a while gathering my energy. Hubby comes in with the post and it is a welcome distraction. In it are some new t-shirts so I change, after about 1/2 an hour I need to put the rest of the post away so get up and follow hubby out into the garden. I’ve forgotten my painkillers. Sitting in my chair swing I watch him for a while.

It’s hot and now about 3pm so he suggests a drink. I follow him back to the house and finally get those painkillers in me. We go back outside to sit in the shade and drink our coffee and discuss work to be done in the garden. He fetches a saw as I’ve pointed at a few low branches and asked for them to be lopped off so the view from my swing is nicer.

The painkillers are kicking in now and I spend 15 mins helping hubby unroll 3 willow fence screens we had left lying on the ground, they are rotten and I call the chooks over to eat the bugs. They have a whale of a time but my head is beginning to pound at the base of my skull and that is one of my dire warnings.

I tell hubby I need to go in and stagger towards the house concentrating on my out breath to keep me breathing. My head swims, I feel sick, the pounding continues and my vision blurs, the constant pressure under my ears continues, my legs wobble, I make it to the sink and hold on so I don’t fall until I can fetch a glass and get a cold drink. Gradually my symptoms fade except the pressure at the base of my skull. I make my way slowly to the living room, furniture and wall surfing as I go to maintain my balance. And for the next few hours I sit the sofa watching TV (I use the noise to drown out my almost constant tinnitus, another ME symptom) and crochet. I can do it with my eyes closed, it takes no concentration and is mainly muscle memory being used. I find it meditative. There are flies buzzing round the room and the noise is draining, so I decide to visit hubby in the garden again. The walk up our few steps is like moving through setting concrete but I make it. He is on his way in anyway so I snap a pic of the work he has done and come back inside with him.

He starts to make dinner, somehow it’s now 6pm. I take up a pair of scissors and decide to snip the frost bitten leaves off the hostas out by the back door, a job I can do sitting down, it takes me about 10 mins and then I’m bushed, but the hostas look a lot better.

Back in the living room, again on the sofa, and my mind is struggling. I can’t hold a thought and I find my self staring blankly out of the window. I pick up the crochet but make many mistakes, the same one over and over again too and I get very frustrated. In my mind I am running through the many tasks I hoped to get done today, of which I did none. The hostas were a task from a previous day. Maybe tomorrow will be better.

Dinner is served and conversation with my son and partner is stilted as I can’t concentrate. I know I am coming across badly, my mind isn’t agile and I can’t keep up and my struggles to contribute and understand just seem to irritate. I give up. It’s not my fault they only try to engage with me at my worst time of day, it’s their loss too. I wish I could partake in sparkling repartee but I can’t. I feel a mixture of guilt and irritation at their lack of understanding, they can’t understand as they don’t have this awful disease. It is worrisome, I used to be a wordsmith and now I can barely string a sentence together and find following conversation very difficult. Even Ralph sometimes forgets how much I have changed and takes me to task for not understanding him; to him it is obvious to me it’s like spotting trout in a muddy, fast flowing river, with plentiful weeds, and no polarising glasses. I feel bad enough as it is without being berated for it. It makes me feel awful, feel guilty for being ill. Makes me realise how much he has lost too. And that makes me immeasurably sad. It also makes me feel very lonely.

After dinner son requires a task done and I have to climb the stairs for it. It’s hard, but at the same time a welcome relief to be away from the chatter. One form of energy drain (noise) to another (physical activity).

Hubby presents me with a cup of tea whilst I try to sort out the boy’s request. Then all three go for a gentle wander with the dogs. I can’t, I have nothing left. I know I’m in deficit really, tomorrow will be hard. My list of things to do grows again.

Until bedtime I mooch on the sofa undoing and redoing that bad crochet. Bed time is welcome. The night is long, I see a good few hours whilst awake, I struggle and eventually pull another blanket over me and doze until hubby rises for the dogs. 9:20 am the day starts again.

Looking at it I managed no more than an hour of ‘doing’. This is a backwards step from this time last year when I was managing a good couple of hours as long as I rested in between. Today will the same as will tomorrow. It’s depressing. Lockdown makes no difference.

It’s 5 years later and my days are very similar though I don’t get outside as much even in the nice weather. I’m no better, possibly even a little worse. My ME/CFS seems to be of the slowly deteriorating kind. It is what it is. We have moved now and the huge garden is gone. My hour of doing now includes getting dressed etc which I didn’t include above. I use an electric wheelchair, I use a crutch if not using the wheelchair outside and I’m meant to use a stick inside at all times (I am useless at this as I lose it, forget where I put it all the time, and the energy spent finding it is greater than the energy used for distance I need to cover to get to where I am going so I wall and furniture surf). Sometimes I even get rebellious and walk down the middle of the room sans anything, relying purely on my body to do its job. It makes me feel a bit more normal for a while and then the pain and exhaustion hit. But I still have my glimmers.

My knitted critters (if I had the energy I would do mini films and books etc, ‘but alas’ … to quote a famous wizard), the annoying dog, my family, thenYorkshire countryside (pic taken after packing up the car for R to take a phone call) gluten free carrot cake (it’s always carrot cake that is the only option, have you noticed? Why is that? Luckily I like a good carrot cake), and my writing.

So that’s all for now, ta-ra Tx

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