Life Deflavoured

Cold is not cold for me as it is for you. I don't register "cold", oh, no, my stupid (actually damaged) brain registers the feeling on my skin as pain.

I don't develop goose bumps, I don't ever shiver though to touch me I might be a block of ice. To me it feels as if an army of small creatures armed with cheese graters are scouring away at my flesh.

I stopped registering "cold" quite suddenly about three years ago, before that the body was slow to react, but eventually my teeth would chatter and I would shiver. One snowy night walking my dog I came to the strange realization that it did not feel cold to me, but reasoning how cold it was and how long I had been outside this was not right, not in any sense. I couldn't sense heat either, but heat, other than scalding water, was unlikely to do much harm. It doesn't fritz out my nerve ends like cold does, if anything ambient heat makes my nerves pleasantly numb. I use a candy thermometer in the bath and shower to avoid scalding. I suppose that doesn't come under the heading of "normal" either. Short of living in the amazon exhibit at the aquarium there is nothing I can do except cope as best I can. Medication to bring the pain levels to bearable (where the cheese grating gnomes will sit far away from me for a while), clothing and heat sources, like steaming coffee and tea, clothing (lots of it). When it rains, or I'm in the shower the top of my head feels nothing, very odd. Contact burns which normally would blister, don't, just leaves a scorched mark, but no blister. Nothing, but nothing is normal. As each passing month more and more is abnormal I am uneasily reminded that this is a progressive deterioration, and for each change millions of brain cells have gone, poof, and you can't reanimate dead tissue, hell, they can't even pinpoint the damage.

The cold also makes my muscles rigid, blood vessels constrict to protect the inner organs, lack of bloodflow makes muscles crampy. The damaged brain often sends signals to contract and forgets to tell those same muscles to relax. My face which hasn't any insulation left (looking kind of gaunt) and hands are the first victims of the cold, I wear a grimace and my hands unless kept moving shape themselves into something that looks like a chicken claw. At least my grimace looks like a smile, but can be inappropriate when I cannot wipe it off my face.

The cold makes my nose run a and my eyes tear (well, just one eye), but lacking the muscle coordination to prevent a shower of nasal drip can become quite the embarrassment (in desperation when going out I pop a decongestant to dry things up a bit and walk with hanky to my face).

I do pull it together for an hour or so a day to walk the dog, run and errand and the rest of time drag myself about between lie downs. Friends who see me remark how well I look, yeah, that one hour a day. When the remark is made it devalues just how totally rotten I really feel. No appreciation for the work and sacrifice to put myself out there for and hour of kinda "normal".

Unless you've been there you cannot know how it feels to know your body is rapidly losing anything of "normal". I remember shivering, teeth chattering, goose bumps, swallowing without having to make it happen. I remember having the energy to spend a few hours with friends after a full day at work, and still my house sparkled. I remember planning meals according to what we'd like, not what I can manage to swallow enough of before becoming stone cold and unpleasant to eat. I use memories of taste to taste with, if I don't put out the effort to remember everything is uniformly flavourless. Digestion provides body heat, well that's out for the most part. See how nothing is normal?

I valued my complete complement of senses, smell, taste, touch, hunger, thirst, sleep, oh, sleep, honest to goodness real human sleep. sleep complete with dreams after some cosy warm time drifting, warm. The feeling of being full and warm after a meal. Feeling energised by exercise, not feeling near dead after a few minutes of rushing around my tiny apartment.

I've given up driving (slow reflexes, faulty depth vision), walking in high heels (balance and feeling the ground), a drink now and again (some unexpected reactions, not a bit pleasant), movies (just cannot sit still that long without getting rigid and cold), and forget about having sex (no details, but let's just say too scary, won't be doing that again). Sigh -- but I look well?

Is that really what it comes down to? Pity the wretched because of how they look, don't pity the attractive, because it is really only important to look good?

I know that everyone with ideas on how to keep warm has the best of intentions but I haven't a clue how to convey, succinctly, that my body just does not work as you'd expect.

As bad as dealing with the cold is, even worse is the level of functioning with limited mobility and cramped hands. Not because it is painful, the worst is that I cannot do what I'd like to. Millions of worth while ideas every day and I cannot execute but a couple of them at best. There is a heap of bright shiny ideas and inspired artwork clogging up my brain, stories, paintings, poems, correspondence, and if I'm lucky I can manage and email and a bit of knitting or crochet work.. If, that is, I've managed to get the necessary everyday hygiene, keeping the body warm and housework out of the way and have an ounce of energy left. Ghastly, I finally haven't got to work at a soul sucking job, but now have even less left to work with. I'm looking for a silver lining and am coming up with burlap. I feel apologetic to the cosmos for falling short of my potential. Honest I tried very hard. Not quite good enough, sorry.

Forgive the whine, forgive me if I am over explaining, but you see, there has been no indication that anyone outside the orphans with the same brand of dysautonomia, actually "gets it". I'm living in this body, it still feels entirely unlike my body to me, rather like having been taken out of my perfectly tuned former body and given this total jalopy which only looks the same. some things in like you just cannot get used to, rather like losing a breast or a limb. I suppose I have only phantom senses.