Ok, so it's been a while since my first, and currently only, blog post...and here's the reason why: I'm chronically ill and it generally f***ing sucks and makes my life difficult on a daily basis. I am currently diagnosed with Fibromyalgia, Myalgic Encephalopathy (ME)/chronic fatigue syndrome (CFS), Postural Orthostatic Tachycardia Syndrome (PoTS) and, about two weeks ago at an appointment at the genetics clinic, I was finally diagnosed with Ehlers-Danlos Syndrome type III (aka EDS Hypermobility Type or Joint Hypermobility Syndrome, depending entirely on which doctor you see and their own personal opinion on what your condition should be called *rolls eyes*). This last diagnosis is a bit of a box-ticking exercise in terms of having the 'correct label' for my health issues, because it doesn't change my day-to-day treatment or management of my symptoms, but the main thing for me is that it gives me a definitive underlying cause for all the symptoms and associated health conditions - something some of my health professionals don't seem to understand is important to me, for the sake of my sanity and just generally dealing with feeling like crap. All. The. Time.
To look at me, you wouldn't even know I was sick - but you only see me when I'm having a 'better' day and have managed to do my hair and make up and maybe even make it out of the house. Lately, I haven't been making it out of the house much at all. Even though I've been stuck inside, I haven't been able to write (or draw or do anything much creative/fun) because I've been in so much pain that I couldn't physically sit at the computer to type. I can't even begin to explain to you just how frustrating that is.
Just getting through another day is an achievement in itself for me. I've actively been trying to get help in managing my pain, but our cash-strapped NHS - which I feel very strongly about fighting to save - has meant a long wait for physiotherapy. I resorted to paying for private physio, which went well for the first couple of sessions, and then quickly descended into an all-too-familiar scenario where I'm told to push myself by somebody who, despite claiming the contrary, doesn't understand my medical conditions. Being told by a fit, healthy and very active person that they'd "be tired and achy a couple of days after something such as a 5k run too" IS NOT THE SAME as the extreme and debilitating fatigue experienced by someone like myself, after relatively little exertion, be that physical or mental. It's incredibly patronising and makes me feel like they think my problem is all in my head and that actually, I'm just lazy and not trying hard enough to get well.
It boils my piss.
I want to be well. I miss going to work at a job I loved (I was a florist at a lovely independent and creative local business) with my colleagues who I both loved and who drove me crazy. I miss being financially independent instead of being on social security benefits and having people apologise with "Oh, I'm sorry." when they've asked what I 'do' and I've replied that I don't work at the moment because I'm chronically ill. And then seeing the confused look on their faces because I don't look sick. It's rare that they stick around to carry on the conversation after that, but I do enjoy talking to the ones who don't make excuses to walk off! And guess what, I don't just talk about being chronically ill!
I'm still me.
I want to be well. I miss going to work at a job I loved (I was a florist at a lovely independent and creative local business) with my colleagues who I both loved and who drove me crazy. I miss being financially independent instead of being on social security benefits and having people apologise with "Oh, I'm sorry." when they've asked what I 'do' and I've replied that I don't work at the moment because I'm chronically ill. And then seeing the confused look on their faces because I don't look sick. It's rare that they stick around to carry on the conversation after that, but I do enjoy talking to the ones who don't make excuses to walk off! And guess what, I don't just talk about being chronically ill!
I'm still me.