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Bad BIID Day
Written by Cath on Tuesday, January 6, 2009
It’s been really bad in recent weeks. I was warned that coming out of the closet would do that to me, but I suppose no one fully expects quite the extent to which BIID can take over. Until it does.
I’ve been strapping my fingers together again, with crepe bandages and then tape, making sure everything is nice and tight and pulling them together at the tips, so they take on the appearance of barnacle tendrils about to emerge from their shells. I’m very efficient at this, ensuring they are constricted without inducing too much pain. They go nicely numb sometimes - the ultimate bonus is when this continues long after the strapping comes off. If I don’t have to see anyone or go out in the car I can leave them strapped for 24 hours or more and most things around the house are perfectly manageable like this - they just take a bit longer and more caution. Same as they would if I was a C7 quad. It’s amazing what you can do with thumbs and palms and a minimum of thought.
When I peel the strapping off I see crooked fing ers, folded one over another at unnatural angles, stiff and unfeeling. They can fool me into believing they really are paralysed for a few minutes.
At other times I have to content myself with just not using them, not as difficult as you might think actually.
My body displeases me. Not in a dysmorphic kind of way - its faults are perfectly obvious to the world and not just to me. I’ve always had issues with my appearance, which are nothing to do with BIID, but everything to do with poor self esteem. Because of that I don’t look after it (also potentially quite handy for BIID), although I have long since realised that if I am ever offered surgery, I will probably have to go on a fitness programme and a stringent diet to get ready for the outcome. This is actually quite an amusing concept, as nothing else has so far induced me to do so.
I hate having to - being able to - touch my own body and my legs. I hate feeling other people touch me for any more specific reason than giving me a hug. This has been the case since I was very little. I cringe inwardly when others refer to limbs in general and mine in particular, but I have never understood why this should be so. There is no tangible reason that I can remember. Whether it predates BIID and is therefore causally related, or w hether it is as a result of needing to be paralysed, I just don’t know.
I’ve also been surfing the net reading SCI related websites and message boards and anything else I can find. I feel compelled to do this. It is like a drug. I don’t think I could stop at the moment even if I wanted to. But at the same time it leaves me desperate and depressed.
The walking business is more difficult. My bedroom is upstairs, unfortunately, although my bathroom is now accessible, with millimetres to spare. At home I can at least sit in my wheelchair - it’s amazing how long I can sit in it without needing to shift position or get up - far longer than on a desk chair or the sofa. It feels like home in a way that home does not. I am trying to get up the courage to follow Ada by wheeling out into the big wide world, but apart from going to work, I don’t often leave my door anyway and old habits die hard. That is something I need to work on.
It is when I am lying in bed that I can properly let myself be a quad. There I can lose all connection with my body and legs without much effort at all. But the small hours are also when I feel most tormented as well, with no distraction to keep me from turning over ways to get what I need. Lately my thoughts have turned to lump hammers and scalpels. These both scare and exhilarate me but ultimately leave me feeling more desperate and more alone.
If only there was a surgeon somewhere out there who has BIID…
Tags: "self esteem", BIID, Desperate, Paralysis, Quad, SCI, Surgeon
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7 Comments
2 On 6 January, 2009, Claire said:
FWIW there *is* a surgeon out there with BIID and he won’t help anyone, not even himself. Too dangerous - he could lose his license and end up in jail.
It gets easier but there are ups and downs always. Honestly, it will probably get worse if you start using that chair out of the house. :o(
I relate to so much of what you say, Cath, even though the details may be different.
Indeed I did not expect BIID to take over my life so intensely. Once the genie is out of the bottle there seems to be no way of stuffing it back in. I agree with both Ada and Claire about wheeling outside. It helps me a great deal; but there seems to be no end to it. I always want more.
I have done that kind of finger strapping, even though it’s not really part of my BIID. Somehow it feels good anyway.
I also have self esteem issues relating to my appearance. For me it is focused on my nose. It is far too big, and it is also crooked from having been broken.
Regarding being touched, it seems I have the opposite issue. I am very needy about it, and seek out people who will touch me a lot. I even like my legs being touched.
At any rate we are all here for you, Cath. Thank you so much for sharing these things.
Hey Cath,
I’m experiencing similar confusion and distress since I came out on this site, but I feel much less lonely. I’ve been strapping my hand and wrist very tightly a lot lately, hoping to cause some damage… got a lot of pain, and, quite oddly, this felt good… but the hand’s still there and still works :(
I also spend a lot of time on the internet looking at everything around upper limb amputation. Just like you, this leaves me desperate, but I can’t help going back ever and ever again!
I saw my GP and asked him to put me on anti-depressant medication. Just started to take the pills 2 days ago, so, no noticeable effect yet. I’m quitting the booze too. New year, new decisions!
Thank you for your post.
Thanks everyone. I think maybe writing about things here might help me get the words out in therapy - a sort of rehearsal to test the water in a safe place.
Touch is odd for me - I crave physical affection (don’t get a lot as a rule - probably my fault) and yet I can’t bear drawing attention to myself physically and therefore I am not good at showing physical affection to others - it doesn’t feel natural. That is most likely tied up with the BIID feelings too.
6 On 8 January, 2009, Sean said:
Hey Tom, good luck on quitting the booze and getting on anti-depressants. It should help some. Maybe not with BIID, but with the rest, and if the rest isn’t as bad, BIID should (in theory) be easier to handle.
I get “bad BIID days” too, but the way I experience them now is much different than how I used to experience them.
Before I got my wheelchair, all the BIID feelings just built up inside waiting to burst. When I got my first chair, which was a “clunker,” I wheeled a bit but not too much (but when I did, I did it ALL DAY, from the crack of dawn until late at night). The feelings still built up, but at least had an outlet. With my current chair, I wheel more regularly now and with some of the pretending I do at school, it’s more “accepted” when I suddenly appear one day in a chair; as a result, the feelings had a regular outlet of release.
However, while the last situation sounds a bit more desirable than the others, the risk to that is although the feelings are routinely being let out, the quantity of the feelings increase as well. So instead of feeling a desperate need to wheel every 2 months, it’s now every three to four weeks. It’s just the intensity that seems to lessen.
I used to do all kinds of stuff to myself in an attempt to simulate paraplegic or loss of feeling in my legs (some of it probably dangerous) but since I’ve started wheeling, that activity has become less and less frequent.
That’s my situation; I don’t know if that’ll relate to yours or if it helps any.
As for the touching thing, I’ve always disliked being touched. You’re not alone there. So it’s not surprising that when someone touches my wheelchair, either on the bus or whatever — even by mistake or if it’s just a brush — it makes me a bit uncomfortable.
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1 On 6 January, 2009, Ada said:
That is a very interesting prospect indeed, IF (and I bet there is) a surgeon with BIID…
I find for me, bad BIID days are balanced with good days. And wheeling outside really helps me:) More than at home, and even if nobody sees me. There is always a risk and it’s a gamble in my neighborhood, but one I’ve been willing to make.
Perhaps you can go somewhere out of your neighborhood but close to home?
BIID will always be there, but hopefully you will find treatments that help you.
I’ll offer what I was told: hang in there, it gets easier:) And it does.