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Two Months of Full-time
Written by Peter on Saturday, July 17, 2010
Two months have past already and apart from three little ‘cheats’ I have been wearing the KAFO on the left leg from the moment I get up to the moment I go to bed, notwithstanding the shower, where there is still a bit of cheating going on owing to the lack of grab rails and shower chair.
So how has is gone so far? Well, it’s made life a lot slower of course. I had decided to go full time after the move but I jumped the gun by a long way which meant that almost the entire moving process was done with a braced leg, and neither the house I left nor the one I moved to are what you’d call accessible. So I really went in at the deep end!
I feel good about it because this is the way I’ve always felt I should walk. Having moved to a place where I was totally unknown helped the transition.
On the physical side, the right leg has suffered, not least because it’s climbing twice as many stairs as before, but it also has produced a sometimes painful hip due to the modified gait (I should have started before I was 58!). I love the new look of the left leg. It is considerably thinner. Where there was a round bulge around the calf muscle it now quite flat. The mid-thigh hasn’t changed its circumference but when I squeeze it, it’s like a very soft, soggy sponge.
The brain has adapted very well and, although I’m sure things would work in a reflex situation, it’s become second nature to lift the leg into the car or into bed.
On the technical side, I dispensed with the knee pad and want to remove the ankle strap. I’ve never been one to want loads of unnessary straps and stuff and tend to fasten it quite loose as I find this works best. If things are too rigid and tight you end up looking like a wooden soldier so I tend to slop around in it and sit on it.
So what has been the effect on BIID? It actually helped a lot. I would normally rate my average BIID feelings/distress at 7/10. Right from the start of pretending it had reduced to 5. Then it fluctuated a bit but then went steadily down to 2/10 to the point where surgery would not be essential. But last week it shot up to 8/10 when a problem to do with parking arose whereby it once again became essential to be truly disabled. I will continue to monitor and report.
Concerning hubby…
Given that it was his idea I pretended full-time for a considerable period before doing something irreversible, it was in fact he who gave up first. This was due to his frustration at seeing me lumber around during our recent move. My response was one cannot choose a time for disability. A row ensued that terminated with me screaming I HAVE TO BE LIKE THIS!
So that’s it. I keep going! If you have any questions or comments – I’m right here.
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1 On 17 July, 2010, Chloe said:
It is always particularly fascinating for me to read about what you’re up to, Peter, since we have quite a bit of overlap in what we’re doing. I can relate to so many of the little details.
That was interesting what you said about the consistency of your left thigh. This was actually the first thing I noticed post back injury that clued me in to something different going on with the muscles there. The tissue was noticeably floppy.
I read your post over my morning coffee, and then thought about it during my shower. I got motivated to do a little experiment after I dried myself off. I gave each thigh mild slaps to see if there was any visible difference in the response. The frequency of tissue oscillation was clearly greater in the right thigh than the left thigh. It also took longer for the oscillations to stop in the left thigh.
Then I got mostly dressed and looked at myself in the full length mirror. It’s supposed to reach 100F today, so I’m wearing a lavender tank top, grey shorts, and ankle socks. The left calf is clearly smaller than the right. Like you, I love it. I much prefer to have a disparity between the legs.
Then I put on the left KAFO and tried walking around with the knee pad unbuckled. I didn’t like it at all. It felt like my leg was going to collapse under me with every step. There’s just too much flexion possible without the knee pad. Maybe we have subtle differences in our anatomy and/or the configuration of our braces.
My KAFO came with two ankle straps, but a rivet came out of one of them and it fell off. I decided I liked it better with just the one, so I didn’t get it reattached. Two ankle straps seems like ridiculous overkill. I also decided that, in the eventuality of the other one falling off, I’ll try it like that for a while just to see which configuration I like best.
I was curious about the sometimes painful hip. I have something similar going on, except it’s the *left* hip. I had attributed this to the gait change. But why would we have the hip pain on opposite sides when we both wear the KAFO on the same leg? The only difference I can think of is that fibromyalgia preferentially affects the left side of my body. So things on the left side tend to get goofed up more.
Yeah, it’s amazing just how much assistive devices can help with BIID distress.