This blog is being brought to you from my death bed… Okay, it’s not. But I feel like crap. I am propped up in bed with several pillows, have a hot water bottle at my feet, my slanket up over my arms and a box of chocolates to nibble on. For the past two days, I’ve pretty much lay in bed scrolling down my Facebook news feed, then Twitter, read some blogs, watched some TED, snoozed and then repeated. This is not because of EDS, this is some messed up Muggle Flu. I mean, it’s not real flu – I have a sore throat, sore ears, a cough, sore sinuses and snot-fest… But I’ll surely start to feel better in a few days.
All the Facebook scrolling has allowed me to come to a bit of a realisation. Able bodied, healthy people are never going to understand chronic illness. People are genuinely more bothered that I have some grotty virus and look and sound like crap than they are when my Sacroiliac Joint (that attaches my pelvis to my spine) attempts to escape the confines of my body or my shoulder is hanging off my body in a weird zombie-esque fashion. I’m not sure if it’s due to a lack of ability to empathise with something they have never experienced or/and an element of disbelief that someone really can function day-to-day in that much pain. Maybe people just need to be able to see illness to believe it. Whatever it is, I need to stop looking for understanding.
It’s a bit of a funny one because things like ME/CFS and Fibromyalgia could strike anyone at any time – you’d think people would want to be more aware. But then again, no Muggle ever thinks it’ll happen to them. I wouldn’t say I’ve ever been in brilliant health, but I used to climb walls and hike up mountains for fun. At no point in my twenties did I ever think that my future involved constant pain and to rely on a freakin’ wheelchair. I knew a couple of disabled people in my teens and early twenties, but I was so painfully ignorant. When I was 16 I dated a guy with IBD and I genuinely thought he was a bit of a wimp because I simply didn’t believe that he could feel so bad or be in so much pain. That’s just having an upset stomach, right? Wrong. To be fair, almost 12 years ago, there weren’t websites like The Mighty highlighting chronic illness/rare illness/disabilities. I’m not attempting to justify my previously extremely sheltered views and ignorance (not forgetting cruelty) regarding chronic illness, but nowadays, there really is NO excuse to pretend these conditions aren’t real and don’t ruin lives.
But anyway, I can’t run around in circles searching for validation from friends and family because it’s never going to happen. I spent a year in excruciating pain fighting with doctors to take my pain seriously and to stop treating my like a “hysterical” woman. I am exhausted and can’t fight it all any more. My pain and my struggles are real and I know it. My partner knows it and my doctors know it. This is my life now. I will celebrate the good days, welcome in the people who have hung around and cut loose the ones who are detrimental to my well-being. I need to spend my life making the most of every good moment and having happy times with my boyfriend and bunnies. Of course, the bad times will still be absolute bullshit that sometimes make me want to die, but I don’t need other people to understand them for them to be real… I just need to be able to get through them and come out the other side. This doesn’t make me stronger or anything sentimental like that… I just have to do it because I don’t have another choice.
P.S. This does not mean I’m going to start being okay with people being assholes to me when it comes to my illness or my wheelchair. Those fuckers’ heads are still on blocks. Is is a matter of principle and me exercising my right to be treated like a human being.