Today, 2 years ago today, my life changed forever. I was finally diagnosed, they finally knew what was wrong with me. One simple appointment for a confirmation of my ME/CFS diagnosis, and I walked out with not only that but hEDS too. Something I did not expect, but I am grateful that it happened. You see, it comes as a certain amount of relief, knowing that it’s not all in your head. I don’t mean that to undermine mental health problems, but it can be hard being told by everyone that the problem is in your head and not your body.
1 year ago, I celebrated my anniversary by cutting off most of my hair. I finally admitted to myself that I was too ill to care for it, and I haven’t looked back since. Getting a pixie was one of the best decisions I have ever made, even if I did do it just after buying expensive curlers.
1 year on, and another milestone. A couple of months ago I accepted my first wheelchair, which is a hard process to get used to. But it has made my life better, beyond belief really. A couple of months ago, I moved into a new flat. Whilst I may be in the land of luxury, I did it for health reasons, not for fun. Staff onsite 24hours, in case I have a bad fall, or have ordered supplies online if I am too unwell to go out. An accessible laundry room so that I can do my washing in my wheelchair. A gym so that I can try and improve my muscle weakness in my own time. A cinema room, study room, and communal lounge so I can have friends round or study with a change of scene without having to go far.
I’m not sure what I’m going to do to celebrate 4 years on. 4 years surviving. 4 years of proof that I can keep going. I would do something exciting, but deadlines. Maybe I should dye my hair?!?! Oh but what colour, since it would have to not clash with my vast lipstick collection. So if anyone is reading this, give me some spoonie friendly (and cheap) ideas! The wilder the better! Or if you live in Manchester, hit me up!!!
Remember I have a new spoonie facebook account so feel free to add me if you want to chat some more.