"My mum always said I was special but I hoped she was just biased"
Let me start at the beginning...
We were out on our gorgeous houseboat one weekend, moored in the middle of nowhere, with me lazily making Christmas cards in front of a roaring fire when it gradually became apparant that I was having trouble breathing. Bit strange you might think! I'd not eaten anything, breathed anything odd in (as far as we know) and didn't suffer with asthma or any allergies other than fabric plasters. As we were in the middle of nowhere we took advice from the GP on call service who recommended getting to a hospital. We walked down an overgrown towpath in the cold and dark with my poor husband on his nerves for about fifteen minutes and waited for a taxi we'd called. The taxi couldn't find the marina we'd walked to though and gave up. I had no energy and my breathing wasn't worse so against my husbands better judgement he guided me back to the boat very slowly and we cruised to the nearest town to be able to get to our own car. We went to the hospital and I spent a week there being tested for all kinds of things, and treated with all sorts of drugs. No answers were found. My breathing gradually returned to normal and I came home.
A couple of weeks later, having started a new job, I was sat at my peaceful desk in a beautiful country office watching the sun on the fields opposite and realised that my forehead was swelling. Then my cheek. I just thought, hm, that's odd and didn't really put two and two together with what was happening. I was on my own and certainly didn't think about calling for help or leaving the office. By the time I got home just after five I was quite unrecognisable and couldn't open my right eye at all. My cheek and forehead were huge and my tongue was swelling drastically so I had to hang it out of my mouth. I was throwing up violently and my heart racing. We went straight to A&E this time at Addenbrookes Hospital in Cambridge where I was treated very quickly for anaphylaxis. I was in hospital another week and took yet another week to get back to any kind of normallity. For those who've never had a big allergic reaction you may not know that one of the huge issues to deal with is the utter bone deep tiredness that it leaves you with.
We thought that this was some kind of wierd one off and really didn't think too much about it to be honest, but then attacks started happening quite frequently. I would be sitting there minding my own business and my tongue would start swelling leaving me fighting for breath and unable to swallow, or I'd eat a healthy dinner and end up with the same thing happening. In that first year after this all started I was regularly treated by the resus team at Addenbrookes twice or more in a week. The staff all know me by name and have a plan in hand for my treatment the moment they see me at the door. Life was utterly exhausting and I was petrified. Doctors thought I might be allergic to my contraceptive pill, or my own hormones for a while but that was ruled out... One of the scariest things was how my voice would change, meaning that no one could understand me. Literally. This still is one of the big potential issues for me as if I'm alone I can't explain.
I can't remember how long after this we went through to the next change. It has all blurred. I do remember that we were at our favourite waterside pub restaurant in Ely and I had a wonderful meal with freshly made colslaw though. I took a bite of it and it felt like someone had tipped acid quite literally over my tongue, down my throat, and then drugged me with some sleeping potion. My breathing/swallowing issues kicked in instantly but I felt like I was being dragged under and slumped with my head on the table. With some very careful testing we realised that it was the onion in the colslaw that was the culprit on this occassion but also realised that I didn't have to actually eat it for this horrible effect to come into play. Simply the smell of it was enough.
Being out alone is very dangerous for me. It does scare me. I'd be lying if I said otherwise. I do still do our grocery shopping though, and I do go out alone (carefully) as I refuse to be beaten by this mess. I just never know where a problem might come from though and it makes me nervous. I've always got a breathing mask with me, and I watch people like hawkes - waiting for them to walk towards me and see if their smell makes me feel like I'm dying or passing out. I walk through rooms hesitantly as cleaning fluids, candles, even the inherant smell of some piece of fabric or furniture can be enough to tip the balance. I have to ring and text my poor guardian husband very frequently and if he doesn't get a fast enough response he comes looking. Justified since our teenagers eighteenth birthday when I didn't text to say I'd arrived safely at work and she followed my tracks to find me just being popped into an ambulance on the high street.
With various experts including world famous specialists looking into my case we were hopefull that they'd find out what was going on and that things would improve but it just didn't happen. Daily life got harder to deal with, with more and more foods and common smells causing quite swift and vicious reactions which makes people pretty nervous to be around you I can assure you. After two years we got an additional diagnosis of Olfactory induced anaphylaxis from the experts at St Thomas hospital in London but their only possible solution was to stop me smelling things and it seemed to stop me passing out completely but didn't stop anything else and was only managed by (and this sounds bizarre!) a cream made from the seeds of red hot chili peppers being wiped around the membrane inside my nose. VERY painful. All this while, a marker pen could lay me out, or walking down the veg aisle in the grocery shop. This still didn't explain the awful hives (urticaria) and the soft tissue swelling. I'd also developed Delayed Pressure Urticaria with Welts which means that anywhere I have pressure on my body the soft tissue literally swells and gets enflamed and gives me the most painful welts. Working with my hands for any length of time gives the exact same result too. Days like this my husband cuts my food up for me.
So we got left in this kind of half life with all this weirdness, and still it carried on. I started getting massively disfiguring hives on my body, hands and face - I looked like the elephant man, and my hands were looks hooked claws, too painful to use. On one of my worst days this cooincided with a hospital appointment and the consultant took one look at me and instantly prescribed very strong immunosuppressants. I've been on them two years now which is dangerous as they can basically stop your liver and kidneys from working and give you very high blood pressure. Mine hasn't gone up too much though, and although my liver and kidney levels are also raised it's not doing anything permanently bad as far as we know. I spend my days mostly in the secure environment of our houseboat where nothing comes in without being checked (unless I am too tired and slip up) and my safe little office with the worlds most understanding bosses. I can safely drive my car as long as I don't eat or drink as I have a state of the art recirc system with a fabulous filter and that's pretty much it. I go in a couple of small local shops where they know me and know when I need an ambulance, and everywhere else is too dangerous. With supervisation it's possible to have days out but without being able to control the environment we can't ever be far from a car or from medical assistance. The smell of someone eating a bag of crisps can be enough for me to be unconscious on the floor, a room painted months ago can be giving me the fumes strong enough to close my throat up, and an errant cooked vegetable aroma lurking just as bad. It makes people worry so much - friends stay away as they don't want to hurt me inadvertently and even family have trouble. It's hard to really realise how many things effect me now as our coping strategies are so automatic. My poor husband lives life on his nerves and he and our teenager are absolutely fierce about dealing with anything that could hurt me. Sounds pretty depressing doesn't it?
Want to know something funny though? I'm really not depressed. Couldn't be further from it actually. I have a family who have proven to me day in and day out just how much they love and care for me despite me being a mutant, I have a job where I not only adore going every day but feel truly valued and respected for all I contribute, and then there is LFCC! I started this accidently really after a friend saw those Christmas cards on facebook that I was making the night of the first episode and then all those times when I was too sick to move I would make more. People started to ask about buying them. I unleashed my creative side which had been under wraps since building the boat and it gave me a whole new outlook and a fabulous focus. I probably spend as much time creating as LFCC as I do at my day job and it's not only given me a fabulous group of friends all over the world, but given me back my feeling of worth that I may not be able to walk through a shop but I can inspire someone and can give the world beautiful things to treasure and remind them that I was here, and that I have a worth. With another scary week passing, this time with the involvement of an air ambulance and yet more allergies appearing (know anyone else who is allergic to hospital wrist bands?) along with the already impressive list, who knows what time will bring, but I know I'll still be here. I'll still be creating, and hopefully you'll be giggling along with me when I have a scattery natter!
I really wanted to say, don't feel sorry for me, and thank you for being here for me when I need a boost, and for allowing me to whinge a bit when I need to! My floaty people, you're fabulous! If I had a choice of trading the crud but giving up the good stuff, then you just keep your hands off my crud! ;o)