Well today is a milestone day, one of which will be marked with cake! You see today marks 20 years since I got diagnosed with Myalgic Encephalomyelitis.
In the years since, I’ve gained numerous new diagnoses which have put into question that original one, however the hallmark symptom of ME, post exertional malaise, is still present and correct so I suspect it is in with the mixture of everything else.
I don’t really know what to write today, things are proving pretty tough at the moment – not health wise as such, but as a result of things outside of my control meaning getting enough rest is proving rather tricky. And there’s unfortunately not much I can do about that. Hoping for a solution in the not so distant future but there could be a lot of work involved to get that, which in turn has me worried about overdoing it. Whatever happens I’m a big believer in “this too shall pass”, that keeps me going through the rougher times, always has and I hope it always will.
I’ve learned an awful lot over the years about what “works” for me in terms of pacing, symptom management & living life (albeit a very limited one). I also know I’m one of the “lucky” ones who has seen some improvement either through medication for other diagnoses, or just sheer luck through circumstances and pacing. Although I’ve described things as pretty tough at the moment, I know they could be a lot tougher, and are nothing compared with what some of my friends live with every single day. I am incredibly fortunate in that sense, however I describe things as pretty tough right now because I feel like I’m hanging onto my current level of health and living by a thread, which could break at any moment. It’s a very tight balancing act and it would only take something else beyond my control to cause that thread to break and my health to spiral again.
Over the last twenty years there have been many ups and downs. Looking back I have absolutely no idea how I ever managed to do my degree part time from home, my cognitive function now is nothing like it was during those years. But I did it, something 20 years ago I never thought I’d do. I’ve learned so much about myself and how strong I can be when there is literally no other choice, I’ve learned to stand up for myself more and advocate for myself at medical appointments and quite honestly wouldn’t be the person I am today if I hadn’t experienced all these years of illness.
That being said there is a heck of a lot of stuff I’ve missed out on in the past 20 years which most people take as a right of passage so to speak. And sometimes I feel like that….naivety….if that’s the right word, puts me at a disadvantage when trying to fit in with the world and meet new people. I find it incredibly difficult to know what to talk about because my life and experiences are vastly different to the “norm”. But I’m still here and trying.
Anyway for someone who wasn’t sure what she was going to write today I feel like I’ve rambled on (with probably random thoughts) for long enough! It’s a day of mixed feelings all round, but a rather important one in my life all the same.
I haven’t done my usual ME Awareness Post this year, because there is quite honestly so much going on & I just haven’t had the brain power to do both this post and that one. I hope to get a “day in my life” post up this month though, as much as anything else because I like having the little record to look back on each year of what’s changed.
I’m off to enjoy some much needed cake…ta ta for now!