01 May 2009

BADD08-09 - a snapshot of changes

I know I said recently that I wasn't going to keep blogging about my disability issues on what is, after all, a work blog, but it's Blogging Against Disablism Day and so, in what I promise will be my last blog on this for a while, unless strictly necessary, I want to look back at how things have changed for me since BADD08.

Healthwise, things have changed little. My seizure frequency remains more or less unchanged. I'm still on the same meds, at the same dose, and have a very good trade-off between stability and quality of life. No complaints there, then.

What did change for me was that very shortly after BADD08, my personal life underwent a big change - I became single again. That might not sound like a big deal to most people (setting aside the emotional upheaval a split always brings in its wake) but it has massive implications when you've been used to having someone around to be a carer, pick up the pieces after a crap day, ferry you to medical appointments because you can't drive yourself there, and so on.

I was partnered up when diagnosed more than a decade ago and then, when that relationship ended, moved almost seamlessly into my next relationship (purely by happy accident). For 12 years, there was someone by my side to tuck me up in bed after a seizure, fight my corner with the medical establishment when needed, and basically help me manage my life so I could continue to live as independently as possible.

Moving out to live on my own has reminded me how vulnerable I am, actually. I'm fortunate that the tiny handful of tonic-clonics I've had over the last year have not left me in urgent need of hospital treatment. But if I had, who would have called the paramedics? The last couple of simple partials I had left me very emotional afterwards - weepy and edgy, more so than when I was coupled up.

I've always been fiercely independent and am relishing being single again in many ways, but it's also made me aware that my need for independence mostly overrides my ability to ask for help. I had a tonic-clonic just days ago that took me 3 whole days to recover from. While friends both near and far were quick to text, tweet, ring and email to check on me once they heard, not once did I feel able to ask any of my friends or family who live near to me for assistance, even though for those 3 days I barely ate, could barely drag myself out of bed, was too frightened to attempt a shower as I felt very unsteady on my feet and cried a lot.

From a work point of view, that was also 3 days I didn't earn any money and, when you're single and self-employed, no one's going to pay the bills for you.

Ironically, that seizure was triggered by stress caused by my frustration with my publisher, for whom I've written a book on - epilepsy!

So, for me, the last 12 months have been very much about learning not so much how to live alone but how to cope alone, and making the necessary adjustments to my daily life to keep myself as safe as possible while staying independent. I guess I still need to learn how to ask for help when I need it. Ask me again in 12 months how far I got with achieving that particular hurdle...


Never That Easy said...

Not to live alone but to cope alone - that really rang true to me, that line. I don't live alone, I live with my parents, but still, I often feel as if I have to cope with things on my own, for fear of being too much of a burden and because they're not all that young or healthy themselves. It's something that I'm constantly challenged with, and I'm sorry that you're dealing with it as well.

Unknown said...

When I first read your comment I felt immense sadness that you live with your closest family and yet still feel you can't express everything you need to. (I must admit, though, I'd definitely feel the same if I had to live with any of my blood relatives!) In turn, you've struck a chord with me - "fear of being a burden". I almost wrote this yesterday and decided not to, but it's true. I want my friends to spend time with me from choice not obligation and that holds me back when I'm in need. I'm lucky that my needy days are very few and far between. I also know I need to give the burden issue a lot of thought. I wish you lots of strength in dealing with the side issues that arise from having a disability and hope you find a solution.