I first got ill with what was eventually diagnosed as ME/CFS exactly 7 years ago, in May 2017. For the first few months I assumed I would soon recover from this awful illness which had completely taken over my body, causing whole body ‘shut downs’ where I couldn’t move or speak. I could barely manage to walk a few hundred meters and taking a shower would require a full day of rest to recover. Then months turned into years.  I read voraciously about ME/CFS, trying every possible ‘cure’ going – my previous blog posts document alot of these. Nothing really made much of a difference.

Over the years I figured out a pacing regime that worked for me, and I began to get some semblance of life back, albeit heavily restricted by the constant need to rest, the inability to stand for more than a few minutes and difficulty walking any distance. The kids got used to me in bed for half the day and accepted that I couldn’t join them on walks or take them to the swimming pool, and I got used to living a half life, where I could manage to work full time and socialise on occasion but the need to rest and recover took over most of my spare time.

Over the years however I started noticing small improvements. I could walk that little bit further. Stand a little bit longer. Spend a bit more time with the kids without needing to nap for hours afterwards. Then at some point last year I realised my body was feeling..somewhat normal.  Living with ME/CFS feels like your body has run a marathon daily, and now you are trying to wade through treacle whilst your brain fills with cotton wool. You regularly wonder if you’re dying, because why else would you feel like this all the time? You wake up feeling just as exhausted as when you went to bed and despite resting for most of the time, you never actually feel rested. 

However, sometime in 2023 something changed. I would wake up feeling.. OK. Like I’d actually slept. I could spend more time with the kids, more time socialising, more time working, without severe payback. In January I felt well enough to start some gentle exercise. I began with one short, light weight workout a week at the gym. After a month of this I added another weekly session and added some cardio. And I started feeling…Good. Better than I have in 7+ years. As the months passed I gradually added in more weight workouts, more cardio, more daily walking.  I am now active every day, averaging 15,000 steps (2000 used to wipe me out), 3 gym workouts a week involving heavy weights and cardio, plus an extra run. I NEVER thought I would be here again – actually able to exercise and have my body enjoy it. The limited stats available show that spontaneous recovery from ME/CFS is almost unheard of after 5 years of illness, and I had absolutely made peace with the fact I would be managing my symptoms for life. But now, suddenly, I’m active again and loving every moment! 

So what now? It’s been 4.5 months of gradually increasing activity and feeling good. Too soon to say I’m recovered but I would definitely say I am in remission. I’m scared of slipping backwards and ending up where I used to be, after this glimpse of life again.  I’m making the most of this newfound energy to make up for some of the time I have missed with the kids (I fell ill when my oldest was 3 and youngest was nearly 1, so they don’t remember ‘healthy mummy’). I’m managing my workload much better without the need to nap at the end of every day – now I take a walk with the kids instead.  I’m helping out around the house more, since my husband had pretty much been a single parent at times. I’m enjoying feeling like ‘me’ again. Not an exhausted, brain foggy version of me. Don’t get me wrong, I still have bad days. I still get migraines, but more like one a week rather than one a day. I do still need to rest but more like, I’m ‘normal’ tired rather than ‘everything hurts and I’m dying’ for no particular reason.

I am so happy to experience this remission in symptoms but also very emotional at how much I have missed over the years. This illness is brutal, and I’ve been ‘lucky’ enough to avoid the severe end of the scale, where people find themselves bedbound and tubefed for years. I just have to hope now that after 7 years of illness, I am finally able to truly live again, and this remission continues into recovery.