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.

Day off

Enjoy a hive-free day! Yay! I have a face! With eyelids! Godknows how that was achieved. Probably I hit some magic combination of antihistamine, fish oil supplement and probiotic yak pee. I have tried a few esoteric solutions now. The usual ones like coconut oil, olive oil, goat milk, baby lotion, soda potion, pee and honey? I tried them all already.

Whatever, enjoy the day. No doubt the magic balance I achieved for such calm facial harmony will be gone tomorrow, when I will once again officially carry my public certification as one of society's more ugly members.

The thing is, I find that many remedies work. For about an hour, until the hives flood back again. So I can say, in all level-headed consideration of the matter, that chronic hives are one of the most horrible things I have ever had to endure, and I have had quite a few challenges to date.

Hives are like a burn; they can tear open skin that becomes as dry as sandpaper (nice). I can wear only particular clothes (smooth white cotton). I can eat only a restricted diet. I carry the anxiety that straying from my miserable fare will cause that type of pain which is beyond tears. Imagine going face down into the nettle bed! Come up again smiling; you may as well. You have to endure it all day and all night and there is nothing you can do about it. 

Anyway, Doctor NHS refuses to prescribe yet more short-term steroids; he says my idea about taking them on-off is a great idea. If I want to die. So I have a fistful of more pink tablets that won't do anything, I keep another pointless diary, and next month I can enjoy another trip to the dermatology clinic, where I will set myself a personal challenge to provoke the nurse to naughty laughter at vulgar jokes involving the word pizzle.

Otherwise, there is nothing good about this condition. Even the name is crap, isn't it? It sounds like not much at all, maybe something that is picture book and possibly cute, like fat-bellied bees in yellow striped waistcoats. But I want a proper horrible sounding name like Skewerataxicosis. Any foul sounding names to call this horrible state, gratefully received.

Need a guide to Prednisolone?

I have given in this morning to the dreaded pills, the Prednisolone.

Hopefully that means nothing to you.

However it might mean something to you people searching on chronic hives and angioedema, and you are really the only people who need this post.

The reason I have avoided these little beasties is not simply that I am a die-hard hippie who has so far handed over my mortgage to Doctor Quack and his magic herbal pixies, it is because Prednisolone comes with fearful side effects more suited to the atmos of a German expressionist movie from 1922. Let's just call them Nosferatu's Happy Pills.

See? Grit looks forever on the brightest side! I am chippy about medical miseries in my vague hopeless way, yattering off my stock of handy British phrases like never mind and mustn't grumble, together with my fortune cookie philosophy useful for all health matters, even though I mostly chant from little seeds grow big trees.

But with this powerful combination I am sure to be able to effect a cheery outlook on the range of medical possibilities the evil Prednisolone will now certainly offer me! And it is too late to stop me. I swallowed six already.

Let's try, anyway, making the best of a bad job.

Have you severe depression, bipolar disorder or manic depression? Prednisolone is the drug for you! Offers to make any mental condition worse, much worse, until you are in the cupboard under the stairs rocking backwards and forwards.

Nervousness, schizophrenia, mood swings and plain old being out of control of your reality? Yes, Prednisolone helps by letting you see things which aren't there! Personally I am looking forward to this one; I placed an order already for three naked men, a vat of champagne and a monkey.

Have you been in contact with someone who has shingles, chickenpox or measles? Even if they don't know about it yet? Like, they're just carrying around that infection, waiting to kill you? Because, yeah, on Prednisolone, if you catch it, for you, it's probably fatal. Never mind! You can take the monkey with you when you wind up screaming at your own funeral.

High blood pressure? Heart problems? Gulp down that Prednisolone, if only for your Sunday afternoon entertainment. Better than the TV when your super-pressurised blood shoots out both ears like oil from an unplugged well. Why not get the kids to photograph the moment for your GP's inhouse magazine, Medical Mess of the Month!

Stomach and intestines. Let's get grimy with the innards. Bloating, ulcers, perforations. Basically, your insides are going to resemble a colander after a few weeks on the Prednisolone. You can always be useful! Maybe you could be hung upside down and use your handy intestinal lining as a spaghetti strainer.

Hormones, you're in for a treat! Soon, passers by in the street will stop to wonder, Who is that girl? And how did she get that glossy chestnut brown on all her luxuriant facial hair?

Skin! The very reason I've been prescribed Prednisolone! Promises to cover me in purple lines, bruising, acne and wounds that don't heal! Yay me! A huge festering lump of drugged out pox!

But hey! Let's look on the bright side. The pills are teensy-tiny, and so easy to swallow.

Not at the parade

Had a spectacular Grit collapse today of the sort that I do especially well, even though I say so myself.

Related, I suspect, to that party turn I can perform where my face swells up like a purple helium balloon then my skin drops off.

I was forced to cancel the craft stall I had booked, where I was hoping to sell my new jazz number. Anyway, it is one good reason for not telling anyone where I will be, because there is a high probability, I won't.

But the elegantly supine Grit meant Dig (who is fortunately at home en route for HK via South Korea) had to ferry about the Gritties Juniors to today's events. To wit: parade of giant puppets where they are proudly (I hope) holding aloft the giant faces they have spent the last six Mondays composing, plus the Hat's party bash by the lake, where there were guaranteed to be choirs and guitars.

So I have no pictures on a day that should have been busting with them. I did, however, capture the view of the jasmine from the hammock.*

I can tell you, I am a crappy person to lose health. I do none of that brave to the last sort of dignity and composure. Absolutely not. I am kicking and screaming my way into this next new phase of my death-in-life.

*The hammock wot I made from an old football goal net and two chunks of tree because I am too mean to buy one. And I bet you did not know there is quite a bit of geometry to get right in a hammock, did you? Get it wrong and the bastard hammock pitches you face forward into the brambly bush. I got Squirrel to test it for me the second time round.

All downhill from here

The ambulance did fine for me, that's all I'll say, without blasting my medical miseries from here to South Korea.

I will only narrate this lovely moment, as three medics stood by my bedside contemplating the consequences of a demolished Grit. They suggest one scenario from here is a hospital stay, so be prepared. I attempt to make light of it by quipping that looking after the house will be easy! I tidied up already!

There is a moment of shocked silence as everyone contemplates the train crash of my bedroom floor. I feebly add, 'I meant downstairs'.

Something is going on. Avoid stuff and eat antihistamines

Spend your taxes.

Take my allotted hour in the NHS, locked up in the Hospital Dermatology Department with Doctor Skin. She explains tortoise balloons and I think, I knew that by Googling.

In short, her diagnosis is, Something is going on. Avoid stuff and eat antihistamines.

I knew that by Googling, too. Honestly, the medical profession might be snooty about the untrained patient using Doctor Internet, but to me her medical knowledge has been essential. Through her, I have learned there are literally hundreds of women - hundreds! hundreds! - who are exploding all over Britain every night!

If you do not know about the tortoise balloons, I can tell you. Essentially it is not a search for a fashionable allergic condition that you hope makes you more desirable at middle-aged swinging parties, it is a bizarre experience where your face goes to bed at midnight and wakes up in the morning twice the size. Two days later all your skin drops off.

Angioedema and urticaria (swelling and hives) are not fun, and do not make me interesting. In fact, they make me sodding boring. I mean, invite me to dinner. I'll bring my own rice cakes.

Well, thanks to my late-night burrowing in bloglands, I have learned from the experiences of many far worse afflicted than me. Now at least I am convinced it will pass. As is Doctor Skin. I narrate, on request, the cocktail of blessings and curses that life has shaken (no cherries, no ice), beginning with the spontaneous triplets, the deaths, the hole in the chest where the heart should be, the international relocation (twice), the hypersensitive explosive daughter, the chill wind blowing through my miserable soul, and the funny knee that goes clicketyclickclick.

Doctor Skin says a person's body can react when it enters a period of relative content. I tell her that would make sense, since I mark this period of stability from the funeral of the brother in law who locked himself in the attic.

Now for all other people doing that late-night search on angioedema and urticaria, the most effective approach I have found is to stick to a boring bastard of a low histamine diet with no alcohol so you can take the antihistamines.

PS. The NHS was okay. Thank you very much.

This one will do it

I am on the search of another cure for my tortoise balloons. The diet isn't working. It is ages before the hospital appointment. I must embrace the homoeopathic approach.

To this end, I first have to abandon the kids in a park. Not any old park, obviously. The park of our Monday meet. When a bunch of home educators come together so we can introduce kids to other kids, call it the S-word and, while the offspring disappear to beat each other with sticks, chat about how no-one understand us.

I think of our local home ed groups a little like an extended family - dysfunctional disparate people, some of whom have nothing in common except for the fact that we all educate outside of normal - yet we still come together routinely to alternatively amuse and piss each other off.

We can support each other too of course, while we bitch and whine, which means I feel safe to dump my kids on them while I attend to something much more important. Me. I need to zip across town and track down this miracle homoeopathic creme with its seductive packaging and fragrant promises.

Back in the park, someone would phone if there was blood.

See? This is how focused I am on the kids and home education in general. Not at all. I am the centre of my attention. I have to make myself be fit for purpose, which presently I am so clearly not.

For a start, I look ahead in my diary and see that I am soon to be sleeping in a field, joining all the other hardened home educators in the annual sleep-in-a-field-fest.

I doubt my capabilities for enduring that, even when I am on top form, so I have already negotiated an opt-out clause mid-week. But I'm worried that in this present state of health I shall not be able to carry out this sleeping-in-a-field responsibility at all. I won't be strong enough. Shark, Squirrel and Tiger will never forgive me.

So the only option is to dump them with the helpful extended family who can complain about me when I leg it, and go grovelling in alternative remedy shops looking for the perfect answer.

Yes! I find it! Aqua, Prunus dulcis, Calendula, Lavendula, Anthemis nobilis, Citrus grandis. A force of Roman deities sweeping to my aid!

But this cure will work, trust me. It promises everything I want in the world!

Instant relief, perfect skin, normal eyelids, a properly responsive autoimmune system, refreshed spirit, fortitude, emotional strength, the stamina to sleep a week in a wet field, weight gain to make a shapely thigh and not a thick ankle, a dinner of spinach and salmon, deep red wine, a vulnerable naked man, and a tiny toy fox terrier to keep in my handbag.

This could be it. Now all I need do is apply it thrice a day, and lo! The magic will prevail!

Oh well

Spent the morning flat out in bed.

Wait there.

If you like to imagine what follows is a glorious sustained essay on the joys of sexuality, stop reading. Take the fantasy with you, and elaborate the narrative in your head. Go happy.

If you are still here, you can have the truth.

Last night (conveniently after the doctor's appointment), corrosion, buckling and general chemical erosion hit the entire Grit edifice. The complete structure gave in. Steel nerves, brass neck, stone heart and thick skin. It all tumbled down, blasted by a wrecking-ball bug the size of Planet Jupiter. Actually, a knock-out blow from Planet Jupiter was just what it felt like. These days I have not much resistance. I could probably have been floored by a microbe a hundredth-size of the Higgs Boson particle.

I expect everything will be fine and I will spring up again, back to normal, within 24 hours. I haven't any other option. Dig is pimping in South America and the Junior Grits need dinner. 

And I am not surprised the stupid body fell ill. It is all a bag of bone. Anything can attack it. Thanks to the restricted diet I eat while I try and stop my even-stupider autoimmune system from attacking the body that offers it a home, I find out that I now weigh in at a weedy 7st 11lbs. Man, it hurts. There are some days I feel I can lift my glasses to my face and I'll knock myself out.

Well, at least the diet is progressing and working, slowly. It started from a luxurious base of around 8 rice crackers and a glass of water, before it became water only.

Introducing regular foods from a zero start, bit-by-bit, is the key, so I am told, to discovering the thresholds about your diet that can help you. In my case, stop my own throat from strangling me, and preventing my skin looking (and feeling) like the neighbour lost control of his blowtorch. But look on the bright side! Tomorrow I intend to experiment on myself with a Brazil Nut.

To get well as quickly as possible and arrive at the joyous point where I can eat, put on weight, and be normal, I am of course seeking supplementary and alternative forms of remedy. For a start, optimistically swallowing somewhere in the region of 980 vitamin tablets a day. No, of course 250mg of B6 in a camomile infusion might not work, and why don't you tell me the dosage gives me nerve damage. But I think I at least deserve a letter of congratulation from the Board of Trade or something, just for helping keep the international pseudo-science industry alive.

Because I am simply happy to try any dietary experiment I can by also introducing all irregular, faddish, get-well-quick food and drinks. Especially any substance that promises immediate good health, great well-being, and general nirvana. I exclude traditional Asian medicine like snake face and panda nose. I am still vegetarian and ecologically minded. (Although give it another few months and I might change my opinions.)

In this spirit, yesterday I tried the magic elixir called Beetroot Juice. The bottle carries a line which tells you that it colours urine pink, and do not worry, this is normal.

As I say, I always look on the bright side. Abandon the life you planned and accept the life you have. Yes, that saying might have originated in a fortune cookie, but it has served me well. I think of it now, as I lie in my bed, wondering how many years I have to drink Beetroot Juice and never taste a Burgundy again.

I planned a life of dissolute irresponsibility. Enjoyment, travelling to intriguing places around the world, dinner engagements, alcohol, spending other people's money, avoiding all work and eschewing serious enterprise at every opportunity, indulging in routine idling, and enjoying entire days in bed blissed out for all the right reasons.

I have managed none of them - or all of them for such a short time it now barely counts in my favour - but look on the bright side. I might manage what I could say is the finest achievement yet. Piss in pink.

Tuesday

I promise this is the last time I write about the facie horribilis, or the tortoise face of balloon doom.

If I go down that route - creating an online cross-referenced catalogue of what I ate, what I touched, how many antihistamines I can swallow, and the allergen potential of benzoic acid when combined with acetyl salicylic acid - then the lovely gritsday blog would cease to become a wondrous and ever-changing daily source of delight and educational inspiration. It would become a mind-numbing catalogue of medical misery of interest only to other dietary obsessives.

I would be seriously bored by that shit, as any sane person would be, and I need to hang on to sanity.

I have been down this road before, anyhow, and recognise some of the indicators. When I turned overnight into a hippy vegan (1986), hanging around with a lot of organic tie died dread heads, I quickly became bored out of my skull. Lengthy meetings, painfully sat cross-legged, conducted cooperatively over earthenware pitchers of hand-picked chamomile tea, always went the same way: Do bees feel the painful trauma and despairing emptiness of loss when their unique stored sustenance is cruelly stolen from them? Discuss.

I quickly realised that half an hour of that was enough to turn me into a pig-chomping meat-eater again unless I speedily worked out a personal route for myself and stopped attending the happy sharing hippy ring.

So it is with the the tortoise face of balloon doom. I am ditching most of Doctor Internet's advice and resigning myself to a lengthy period of self-experimentation and self-study, the details of which I will not share unless I chance upon the elixir of life, the fountain of eternal youth, or the philosopher's stone. Then you can be sure I will share the answer with you, by bottling it and flogging it for a reasonable price.

Now, in other (educationalish) news, it is Tuesday, which means Shark attends the Woodcraft Folk, a group which she adores.

(I shall have to watch her, and if she picks out a tie-died skirt with bells hanging off it as the key to a lovely summer outfit, I shall whisk her off and join her up to the Pig Fancier's Union.)

Monday

Yes, I have been neglecting matters of not much immediate concern, like education, children, and creating my multi-million dollar business from hand-crafted, wrap-around, pig-skin notebooks.

But I have an excuse. I have been busy, scrutinising every website in Planet Internet concerning balloon faces, swollen eyelids, and how to resolve peeling facial skin by sticking my face in a chlorine bath.

I am still wrestling with the allergy/intolerance/whoknowot. I look frightful for most of the day, and probably the night as well, only that's okay, because no-one has to wake up to the hideous sight next to them. My face looks like a dessicated tortoise slept in it. My dainty morning beauty routine consists of a hammer, chisel, a vat of Vaseline, twenty-two pots of Sudocrem and a pneumatic drill.

And another thing. It is painful. Spiritually as well as practically, involving a depressed state of mind, an unenergetic disposition, and a need to stop everything just to check out another 23,000 pages on whether olive oil could possibly be the guilty allergen. Please no no no no no no.

I have now cut out all alcohol, wheat, dairy, most foodstuffs, and am coming closer to a bread and water diet without the bread. This is not a sustainable situation, even I can see that, so back I go to Doctor Internet who will probably prescribe the solution of thrashing myself nightly with stinging nettles while standing in a bucket of water. Soon that will seem like it's worth a try.

Well, of course I believe there are positive things to be found in every situation, even miserable medical ones!


Okay, I can't actually think of any right now. Give me a moment.


How about, this experience is bringing families closer together, because when I walk down the street, toddlers run fleeing to their mother's arms seeking comfort and reassurance thanks to the approaching alien balloon tortoise monster disguising themselves behind a pair of dark glasses and a muffler.

My own children of course are unaffected by the horror, mostly because having a withered head does not significantly impact on my ability to pour a pack of dried pasta into a saucepan and open a tin of tomatoes.

But it is not all misery in the day. I have found an excellent sub-aqua group for Shark, and I am very happy with it indeed. I handed over a wodge of cash with a cracked smile, so that's indicative of how good this club is. Kid-friendly, well-equipped, brilliantly organised and the chief of the squad never batted an eyelid when I asked if he could just move out the way so I could stick my face in his pool.

Keep your Epipen and a sense of humour

So I need to tell you about the angioedema. Angioedema is a reaction to something. As disfigurements go, it's a good one. Your face swells twice the normal size, then your skin peels off. If the swelling moves to the throat, it blocks the runway to the lungs, then you must evolve quickly to breathe through your ears. Failure to do so results in death.

Where this has come from in me, I have no idea, but then, maybe it has been creeping up on me for the last few years? I mean, those eyes that looked like golf balls last May? The morning I woke up in the Philippines and it looked like Dig had punched me? Well, two attacks this last May and I know, something is going on.

Normally I self-medicate my way through all disasters and emergencies because I am the daughter of my mother. When the paramedics came to lift her into the ambulance she bit the head off the driver and yelled I'M WALKING.

It's not only that we are made of stuff which doesn't give in to minor inconvenience - like loss of a limb or having your entrails fall out over the floor - it's that we cannot just stop life because your face explodes. Things have to be done! The washing has to be brought in. The kids must be fed. Shark needs new pyjamas. Quite frankly, if I am not going to see to this, who is?

But even I have to recognise that maybe it is time to call upon the services of the wonderful NHS.

I can tell you, so far the reactions of the professionals have varied.

1. Adopting a very serious face with some finger interlacing, providing information of various prognosis, worst case progression, possible complications, emergency treatment, providing reference to anaphylaxis, prescribing Epipen and instructions to involve your 'loved ones'; all professionally highly competent, efficient and responsible.

2. Handing over the Epipen while bursting into laughter with the words, 'Learn how to use it, quick! You don't want to be standing, gasping your last, and you think I CAN'T REMEMBER HOW TO GET THE LID OFF.'

Yes, I probably need both those reactions, but I preferred number 2.