A recap on 2016.

So, it's been a while since I made my first post here. I just haven't been able to find the time... So apparently, the time is now, while I'm writing an essay. 6000 words, due for Sunday. I'm good, me.

So, let's recap 2016.
January 20th: diagnosed with EDS.
Many doctors and xrays and MRI's and appointments later: third knee surgery in July.
November: See a specialist because above surgery failed and I need to see someone else, because the surgeon who referred me to the new surgeon told me in no uncertain terms that the problems I am having cannot be solved by the surgery I've had (the surgery I've now had a total of three times! Great right?)

I don't know a lot about what the surgeon is going to do yet. He ordered an MRI for each knee, which I've had, and I am seeing him again on Friday to see what he says. I'm hopeful he's going to be able to help me because if I'm quite honest, I don't know how long I can carry on the masquerade that everything is fine, becasue it isn't. The crippling and constant agony that I am in general is not helped by my knees preventing me from even being able to get up and down stairs properly. My life is severely impacted by the trouble I'm having and I'm really rather eager for that to stop.

However! While my health has definitely got worse over the last year, other things have happened in my life which have greatly improved. I am now in my second year of university, and apart from the above mentioned essay, I'm really enjoying my second year, as difficult as I am finding it (contending with being a chronically ill student, which is something I intend on covering in another blog post). I have made wonderful new friends, I have got my wonderful partner. I am grateful for all of these things.

As I come up to my what I am dubbing my 'crippleversary', I have to reflect on what it means for me now. It means my medical care can be specialised to people who have experience with my condition. It means I have an answer for all of my problems. It means I am part of a wonderful community of other chronically ill people, or spoonies, and the invaluble support they provide, because as amazing as my family and my friends (who are not chronically ill) are, there is NOTHING like being able to talk about being ill and the other person understanding exactly what you are talking about. That isn't to say my family and friends don't try to understand, though. So I've been officially a "zebra" for nearly a year!

So, while my experiences of 2016 may not have been perfect, because of failed surgery, the two medications I tried for chronic pain both failed, my chronic pain getting worse... I have to remember it can (and probably will) get worse, but I must face that when I get to it!