I started this year with all the good intentions of posting regularly on the blog. Keeping to a schedule. We’re not even out of the first month and I failed. I thought I would tell you a little bit about the why.
On my “About Me” page and my Twitter profile, I say I have Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome. I talk about what I’m doing to counter the effects of these by attending acupuncture, but I’m not sure I’ve ever really said what it is I live with, and why, at times, I may dip in and out of the blog. This isn’t meant as a poor me post, it’s simply meant to be in line with being honest and explaining what has been happening lately.
Ehlers Danlos syndrome is a connective tissue disorder that means my body doesn’t make collagen properly. Collagen is what keeps us together, it’s a building block of the body. It affects everything. For me, it means I’m a little bit more flexible than you may be. I suffer with migraines, chronic insomnia, fatigue and pain. Everywhere. I suffer constantly with my hips and this past two weeks, I have had a lot of pain in my back, in the area of my spine that joins up with my pelvis. I thought having hip pain was bad, but it was nothing compared to the pain in my back. It radiates out with a sickening persistence. It overwhelms. It’s why I haven’t been blogging. It’s nauseating, but it’s also mind numbing with it’s perseverance. I’m popping my painkillers with a begrudging regularity, and they in turn effect output capability.
I refuse to lie down and give in to both of these conditions. It would be incredibly easy to do. On my days off work, I’m quite guilty of doing just that. But generally, I don’t. I won’t do it on a permanent basis. I actually want to enjoy my life, I still have aspirations and intend to attempt to achieve them. What it means living with two completely invisible illnesses is that if you see me in the day job, you’d never guess there was anything wrong. I’m alert, active, rushed off my feet, generally happy and part of a team. I put everything into it. But when I get home, it’s a different story. It has taken everything I have to keep that level of energy going through the day and I have no energy reserves left. My work/life balance is completely off balance now. As I’m aging, it’s becoming more of a problem.
Writing gives me hope though. I don’t need to get up at the crack of dawn to work on it, the stories just tick away in my head. I don’t need to be punctual or energetic. I don’t even need to get dressed! Writing and creating makes me feel alive, more so than my decrepit old body generally allows.
Today I’m fighting a low mood which I know is caused by fatigue. But underneath, I can feel the undercurrent of a quiet determination. There’s no choice really, but it needs to be on my terms.