Update March ’09

Hmmm, yes, well, haven’t written anything here since January (o mea culpa) and while I’ve sat down to post many times the words just haven’t made the transition from brain to keypad.  Let’s face it, it’s been a tough few months and I am not a good conversationalist in these sorts of circumstances.

So … Lashings of pain / health crap / associated unpleasantness, nothing new there but it was really doing my head in, turning it to mush and sparking off other kinds of ickiness.  Item 1:  Early in February (I think) my specialist decided to try me on anti-seizure meds, which are supposed to help with extreme neuropathic pain.  Did they work?  Don’t make me laugh.  After three weeks there’d been no reduction in pain, they induced a really weird and horrible emotional  / mental state, and the worst bit, totally killed off my libido.  This last was the worst;  I wasn’t “only” uninterested in sex / love-making, I couldn’t bear any physical contact at all.  Very, very strange for what is usually a most tactile creature.

Needless to say I chucked the medication but the damage was done;  I was in a fine ol’ state of absolute existential despair and death of joy.   I can’t talk about it because it’s still going on (and on), although slightly reduced in the last couple of weeks, it’s just always there and it’s horrible.  I want to cry like, all the time, and occasionally I succumb but not around Tux because he hates it (because he’s a guy and guys want to fix things and he can’t fix this thing or me) and anyway it’s pointless and I don’t feel any better afterward.  You know how sometimes a good cry can be kind of cleansing?  This aint.

And on top of, or mixed in with all that, is my body, or hormones or biological clock or whatever, is SCREAMING babybabybaby, which is and has always been totally out of the question.  Yes, it’s very sad, and while I’ve always recognised that it wasn’t going to be a possibility for me, knowing I / we can’t have the option of even trying or thinking about options when we’d really like to (because [a] the whole pregnancy thing might kill me or leave me even more disabled; [b] how can I look after an infant when 90% of the time I’m so ill I can barely look after myself?; and [c] what if we had a baby and it had EDS et al which is highly likely, how would I feel?) is really, really hurting just now.  Horribly.  Gah, can’t explain it.

. . . . . . . . . .

And THEN, on top of all THAT, are my issues with weight.  I’ve gained so much weight in the last couple of years, due to all the stupid medical procedures (that didn’t work anyway) and medication (ditto) and I can’t fit into the jeans that three years ago I could wriggle out of without undoing the button.  It’s odd, I was always so full of the body-hatred thing, and avoided mirrors and all that, so I have no real idea what I actually looked like, but looking at and measuring my clothes from the 90s and early 00s I was obviously teeny and slender and buff and had a really cute bod.  Now?  Not so much. 

And knowing I look (and FEEL) like a baby hippo is feeding into the despair like so many tributaries into the Amazon . . . And you know, it’s really tricky to get ultra fit and buff and cute again when you spend 90% of your time in bed screaming and crying in pain and being zombied out on Class A drugs (that aren’t even FUN, for feck’s sake like).  So woe is me and all that.  Bleaugghhhhhh.

. . . . . . . . . .

So I’m sorry for the doom and gloom;  I’ll try and get up a few harmless fun posts about horses and cats and fitness routines soon to bury this one.  Hang in there.

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