Coming up to my most hated anniversary, the start of an illness that turned into ME/CFS (maybe I should start an anniversary gift system to help lighten the blow?? Year four could be cashmere…), I came upon an article in the Guardian that really spoke to me – An ill day can still be a good day particularly the following quote:
This is something that bothers me alot. Before my illness I was very active, fit, ambitious and didn’t see many limitations in what I could achieve. Now, I feel like anything I want to do is clouded by the fact I have to balance my health. From days out with the family (will there be anywhere to sit? Will I be overwhelmed by noise / other people?), plans with friends (will I feel well enough on the day? Will I need to cancel last minute?) to work (will I be letting my team down by going off sick? Can I manage that site visit?). I can’t just go ahead and do everything I want to without the illness taking over.
But this article really helped me remember a few things. I am still able to do ALOT, especially compared to others with this illness who are bed bound or housebound. And yes, I need to be aware of my limitations and factor these in when planning things, but I need to focus more on who I am, rather than what I can or can’t do.
This isn’t about ‘thinking positively’ (I have a really issue with the toxicity of relentless positive thinking that’s probably a whole other post) but more about realising that I am still ME behind what I can/can’t do. I still love movies (especially horror) and geek out over Harry Potter, Buffy and Marvel. I still love dressing up at any opportunity. I love singing and dancing after a few drinks. I love gin and margaritas. I love laughing with (and at) Garry and being silly with the kids. The beach is still my happy place and swimming at night will always feel like a glorious treat. I still read trashy books and avoid anything approaching literature. I am still sarcastic and make jokes at inappropriate times. Christmas is my favourite time of year and I start celebrating the minute Halloween is over. I am passionate about sustainability and the environment and still have a great job. This one article seems to have finally triggered a belief that several therapists have tried and failed to get me to realise..
The illness might limit what I can do, but doesn’t have to limit who I am.
After four years of illness the chances of full recovery are slim (although I haven’t given up) but I think this realisation, that I don’t need to define myself by my illness, can help me move forwards without feeling overshadowed by all the things I can no longer do.