Sunday, 8 September 2013

Living with chronic urticaria

This is not a good time to be in the Gritty household, as those members of the family who live with me will testify.

Like today. I am struggling, it is true. Not with providing things for children to do - today they can take all the hours they want, then footle about the house and garden, sewing sticks and painting horses. It is health that constrains and absorbs me today, too much, too unreasonably much.

Some months ago, chronic urticaria came to live with me. I blame that. It wrapped its fingers of stinging nettle around my cheeks, stroked my eyelids with hot spears, and then dug claws into my neck with its acid burn. Helpfully, it wakes me in early morning with skin swollen, stung, itching and scaling. I gulp down fat pink pills and avoid looking in the mirror until midday. The face that I knew has changed; it has become inflamed, scarred, and a constant source of pain.

In the best of days, I cannot wear clothes about my throat; my own hair hurts me. I do not wear any necklace, nor brush blusher into my cheeks, nor use soaps, nor fragrant potions poured from dainty glass bottles, nor thick creams with their promises of youth and plumped-up firmness. None of it. Vinegar I have tried, and the most palatable of cures, honey.

Nothing vanishes the tight pain. To search for that peace, I am winding my way round cures normal, natural, bizarre, ridiculous, repulsive. Maybe, I have come to think, this time, this remedy, forget how unlikely, will work. If that would happen! Then I wake tomorrow, my normal skin, normal feeling, back again! I can take it all for granted, say I have taken it in my stride, it never beat me down, now let's pour an evening glass of wine in the day's celebration.

I know what happens. I wake up knowing hope is another version of despair. I have travelled on this road before. Nothing will send this visitor away, nothing, maybe only time. I hope then, for only two years; but I have read a sentence of ten, twenty, life. Maybe one day, it will surprise me and I can be released. Then I can say no-one could track the cause, knew the reason why it came or went, nor why it stayed the time it did.

But, meanwhile, I still have a face, and my new challenge is, to make it mine. On good days, you probably would not tell much, although I feel. On bad days, I am the strange cabbage patch eyes and lumpy swollen cheeks, the red wounds and thickened skin around the jaw which cannot move without a line of dry pain as if from the wringing of rope.

Over it all, I have to think, feel, be my way; I have to bring onto my new resident the old wrinkles of knowledge that I recognise are my experience; the turns and folds and lines that give me, to you, my who-I-am.

While I do that - reform this face and make it mine, I have no particular desire to show the world what it looks like. But I do. I have to, pragmatic, plain and simple, because I have business to do; vege sausages to buy; kids to educate about the world. And show them how the world looks back at us.

It is kind, for the most part. On a bad day, the worst of days, days like today, while I am out and about, I catch the scrutiny of strangers, or have that moment when there is someone I must speak to, who glances and then cannot look back at me in my face. They do not want to know themselves as the type of people who stare; and maybe they want to spare my blushes. As if I could have them. Unknowing, confirming me as someone who simply cannot be seen, they send me off to cry silently in the relative privacy of the car. Isn't it ridiculous? I find myself hoping, stupidly, that maybe this time, this remedy, my own tears, this briny salt solution - who would have thought it - will somehow magically prove the cure, to wash it all away.


Clare @Rich_Strange said...

Grit, I'm so sorry, that sounds awful. Just a couple of thoughts, which you may have already tried - my go-to new-ish discovery for scary skin stuff is Lansinoh, Expensive, purple tube, nipple-soothing cream but great for everything really. Also coconut oil, and aqueous cream w/calamine lotion. And have you looked at the GAPS diet? Can be good for all sorts. Will be praying you find something that helps.

Grit said...

hi clare! thanks for your comment; the gaps diet looks like it needs a lot of dedication to follow!

Deb said...

Grit, I'm so sorry. What a misery. I wish I had something helpful to offer.

Karen O said...

Have you watched the Fat, sick and nearly dead film? I'm sure chronic urticaria is what the guy suffered from.

Certainly worth a watch as both guys in it were cured.