Taking such a long break from blogging was not something I wanted to do. Circumstances forced it upon me, as I’ve said before, because of health issues blah-di-blah. It’s also why I’m posting so often now – and drafting, making notes and planning other posts – because I can.
This is actually very difficult for me to write about. My personal bête noir, my health. I don’t like talking about it for so many reasons, the main ones being:
- it is pretty fecking boring;
- it’s difficult trying to explain it without sounding like I’m feeling all sorry for myself, whingeing and whining, no matter how factual I try to be;
- I’m a very private and introverted person, and it’s kind of been drilled into me [via my rather oppressive upbringing, and various unpleasant life experiences] not to divulge or share such information – let alone talk about my feelings; and
- the medical issues are kind of complicated.
See, I have several different disorders / diseases, and each one by itself can have a major detrimental impact on a person’s physical health and quality of life. In my case they have a cumulative effect, intertwining and snowballing all the “original” symptoms and issues.
I give you: Ehlers-Danlos Syndrome – Hypermobility Type; Occipital Neuralgia and generalised neuropathic pain; Ankylosing Spondylitis – or Spondyloarthritis – arthritis of the spine and pelvis; Fibromyalgia; miscellaneous neurological odds and ends including migraine, vertigo, nystagmus, ataxia; Coeliac Disease; osteoporosis; severe Vitamin D, iron and B-12 deficiencies; blah blah blah yadda yadda yadda.
In Real Life all that basically translates to severe chronic debilitating pain due to problems with my soft / connective tissue, muscles, nerves, joints and bones. And other fun stuff. And no real “cure” for any of them. Wheeeeeeeee.
Anyway. I never wanted to stop writing, either the blog/s or anything else, but I just had to, I didn’t have much choice in the matter. For the last couple of looong years, and despite massive amounts of a range of powerful pain-killers and medications, I have been bed-ridden, just trapped there sobbing, whimpering, screaming in agonising pain.
I simply haven’t been able to function well enough to write; at times it has even been too difficult to read ! The horror! Books and reading are like breathing to me. On a “good day” I might be able to sit up in bed and read a book, or listen to music, browse the web, watch a movie for a few hours. Tuxedo has set up my laptop and networked the house so I can listen to any music anytime I want, watch movies and TV, etc. He’s a genius and the best person ever, in the way he thinks about me and takes care of me. He gets his own posts *grin*.
It’s so difficult to explain to other people how that degree of pain just stops you functioning, no matter how much you want to do things. Again, frustration! Even my family still doesn’t “get it”; that it’s not a matter of “won’t come over for dinner”, it’s a matter of “can’t get out of bed, can’t get dressed and made up, can’t sit up to dinner and engage with people”.
I have excellent mind-over-matter abilities, and have been pushing through the pain to go to school and get good grades, then uni ditto, then work at high level jobs for approx. 15 years . . . But the way things are now, I simply can not. Can-denotes-ability, and all that.
Yep, the last couple of years have been a total desert, a scene of desolation, day after day of screaming, burning pain in every fibre of my body. Nerves, muscles, joints, skin — Hey I’m not paranoid –my body really does hate me!
So no writing. Pretty much no interaction with other people. Certainly no horse-riding, which I love so much [I got back into riding in 2008 – check out the old entries if you like] . It’s been devastating, really. When I think about this year, and last year, and the year before that, and as I write this, I’m just filled with grief and bitterness and all sorts of emotional flotsam and jetsam and shit.
[Throughout all this I have managed to keep up with most of my rehab / physical therapy exercises. I focus on maintaining the strength of my core muscles – pelvis, abs and back, a lot of Pilates stuff, as well as shoulders, arms, and legs. “I may be lying here whimpering in pain with tears rolling down my face, but I can damn well do some core work and bridging, sit ups, stretches and leg lifts . . .” So that’s something to be a little bit proud of, I guess.]
To be continued . . . To more positive things. Like talking about Tuxedo and how awesome he is. About major strides I’ve made in my mental and emotional “head space”, so I can talk about stuff like this at all. There is progress. An oasis in the desert, heh.