A year ago I had a profound but inexplicable feeling – ‘I am not me’.
A year on I feel a sadness at having lost big chunks of who I was and what defined me – my job, running and cycling, my social life… But increasingly there are flashes of realising that facets of ‘old me’ are reemerging and a relief that ‘THIS is who I am.’ At the same time, elements of a ‘new me’ are developing.
This makes me feel a little less lost. It’s as if I’m finding new ways to reconnect with the world. I also have a deeper appreciation of many of the things I used to take for granted.
Here’s a list of what I’ve lost and found:
Lost (for now? forever?)
- Morning runs up to the top of hills (and down again). These were a key part of my life – physically and socially. My friend and I would put the world to rights as we puffed up the hill behind our house. It’s a fact that the world always seems better at the top of a hill.
- Cycling on my own and with Breeze and our village club. I used to commute daily in London – a round trip of 15 miles – but when we moved here 10 years ago I was too scared to cycle on fast Peak District roads. Christine and Alison from our local Breeze group gave me the confidence and skills to get back on my bike. My social life, largely built on rides and runs, crumbled when I couldn’t ride anymore. Living on the main road in our village, I felt trapped in the prison of our house – a prison with a big window where I could still see everyone else having fun.
- Work. I’m not sure I’ll ever be able to cope with deadlines and demanding clients again. I’ve always loved working. I’ve always found work immensely stressful, investing far too much of my own sense of identity and worth in it. I went part-time in August ’til November as the Optimum Health Clinic psychologist agreed that stopping completely (as my husband wanted me to) would have sent me into an emotional tailspin of panic. I finally stopped in November and it was a big relief. I think being forced to reevaluate my attitude to work will possibly be the best thing that’s ever happened to me.
Rediscovered
- Reading & writing. Reading has always been incredibly important to me. ‘Brain fog’ made me unable to concentrate, extremely anxious about the task at hand, wondering whether this was some kind of early onset progressive dementia. In May I bought a book of logic problems which I used to love as a child. I’d fill them in with a pencil and have to rub the answers out numerous times. Now I’m racing through Anna Karenina. I’ve read 300 pages in 3 days!
- Piano. A few years ago I finally got round to taking my Grade 8 piano exam. (I’d stopped playing when I did my A-levels). ‘Brain fog’ also meant I could no longer focus on musical scores. I stopped playing for several months. I have slowly rebuilt with the help of my brilliant teacher, Kirsty Hetherington, going back to simpler pieces and working back up towards my old standard.
- My sense of humour. Though I’ve always found work quite stressful, I’d always been able to laugh about it and was by nature an optimist, seeing the best in others and believing things would always get better. This started slipping away (looking back, I think from about 2011), leaving me with a feeling of disconnection. I had everything I wanted in my life but it was all pointless. I was looking in at my life from the outside. If I’d had the energy and courage I’d have ended it. Fortunately, the lack of dopamine meant I was depressed but too lethargic to act. Plus I’m a coward so I could never think up a foolproof, pain-free way to get out of jail. Now, even though I still sometimes feel sad and confused, that optimistic baseline has been reset. Things will get better. Things are getting better.
- Old friends. As my energy comes back, I’m increasingly able to stay up late enough to go out to dinner or to the pub. It’s probably only once a week at most but it’s allowing me to reintegrate and feel part of the old crowd again. The next step is weekends away and ultimately a very belated house-warming party.
Found
- Yoga. ‘Old me’ thought yoga was a waste of time. It was boring and didn’t burn any calories. My inflexibility also made it very frustrating. ‘New me’ was forced into yoga as one of the only forms of exercise that didn’t put me back in bed. Thanks to a wonderful teacher (Barbara Hastings-Astourian) I’ve slowly developed a real appreciation of yoga. I struggle with the cardio element of Ashtanga sequences and vinyassas but have gradually built up my strength with Hatha yoga. I’m now learning Iyengar Yoga with Sue Lovell at Peak Yoga. It allows me to indulge my perfectionist streak and gives me plenty of time to recover in between poses.
- Studying. I’m doing a Teaching English As A Foreign Language course. My hope is that I can build a small business teaching English, mainly online. I did French Literature at University and am remembering what a grammar nerd I am.
- New friends. I’m meeting new people. For example, Barbara, who introduced me to Lucy Cross, who used to have CFS/ME and now practises Bowen Therapy. I had one particularly low morning in August when I’d had to stop all of my nutritional supplements in order to do blood, saliva and stool samples for the Optimum Health Clinic. I was sitting in my kitchen in my dressing gown thinking I couldn’t even face doing the washing up or getting dressed. In desperation, I phoned Lucy, who I’d only met once at yoga, and cried. (It’s very hard to admit your life is falling apart around you and I think I’ve shut friends and family out to try and protect myself. It’s only really Mum and my husband who’ve seen it all and I’ve avoided ME/CFS support groups because I can’t cope with the thought of meeting people who haven’t recovered). It’s been an amazing support to have someone who’s experienced what you’re going through but is ahead of the curve.
This isn’t an exhaustive list and perhaps I’ll update it as I go along. I hope it’s perhaps helpful to someone who’s struggling to see a way through CFS.
iamnotme 