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:

Chronic illness can be a hammer blow to your sense of identity. You will feel consumed by the race to get back to how you were, but the real quest is to get back to who you were

Frances Ryan

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.