Full disclosure

I'm having a good few days - long may it last.

While I'm able to think clearly, I wanted to talk a bit about what's been going on. Not because I think it's important, or because anyone's desperate to know or because I want attention. If you're reading this, you probably know me, so you'll know that none of those are true. It's because this shit is relatively common but not widely known, so if it helps anyone else - maybe you, or people you know - then it's worth doing.

I've had chronic spontaneous urticaria (CSU) since February. That's a fancy name for long term hives without an identifiable cause.

I've attached some photos. I've spared you the shots of my body (because LOL), but these ain't pretty. There's no glossing over the fact that aesthetics have been pretty low on my list of priorities.

Bit of tourism in Italy had this result... (June)

Standard

No idea what I did to trigger this flare. Guess the rash doesn't like the Barbican (May)

One of the very early days - the night before I finally saw a doctor (February)

The day I stopped taking antihistamines for a few hours (March)

Just before I took myself off to A&E (February)

A&E night - truly the most pain and fear I've experienced (February)

The bad hives can leave bruises like these

I've seen 5 different doctors, had a middle-of-the-night trip to A&E, a course of steroids (terrible idea) and I've been on 4x the licensed dose of a prescription antihistamine since March.

CSU is not a well understood condition. There is no known cure - you just have to treat the symptoms until the disease 'spontaneously' resolves itself and goes into remission. Remission may not be permanent, so I'll have that hanging over me now even if I do get some respite.

The disease has causes and triggers. The cause is rarely found. Autoimmunity plays a key role, given CSU often occurs alongside other autoimmune conditions - I've also got vitiligo and sub-clinical hypothyroidism, the latter was diagnosed on the back of the CSU.

The important thing about this condition is that although it acts like an allergy, and it's treated like one (with antihistamines), it's not one. An allergy is when your body tries to fight off something it has misinterpreted as a threat. CSU is when your body tries to fight off LITERALLY NOTHING.

If you ever suffer from this, you'll drive yourself crazy trying to identify any possible cause. Don't ask someone suffering with this if they've tried eliminating XYZ, because if it's an option they will have tried it. It's just part of the process you go through.

I've tried changing or eliminating: my shower gel, shampoo, deodorant, laundry detergent, coffee, alcohol, wine, tomatoes, strawberries, anything processed, aged or fermented, dairy, wheat, rice, oats, chicken.... probably other things I've already forgotten.

The only idea I was never willing to entertain was a cat allergy, because no. There isn't a chance in hell I'd give up Jäger anyway, but I probably always knew an allergy wasn't really the problem.

That's not to say a bad day won't be triggered by something mundane. CSU symptoms are essentially the result of a release of histamine from mast cells (a type of white blood cell), but histamine is present in a lot of food/drinks,  while others stimulate the release of it. If your system is already overloaded with the stuff, it stands to reason that adding extra in will tip you over the edge - that's why I've cut down on coffee and limited what I drink, alcohol-wise. 

That's what I mean about triggers and causes. I have no idea what caused me to develop this disease, but I do know what can set off a bad flare - though sometimes it just goes on a frolic of its own and there's no way of preventing it. It's those triggers - as well as the rash itself - that have ruined the last 7 months:

• wine
• exercise—I'd just started to enjoy that shit
• heat—come home from holiday early? Avoid the tube? A hot shower? A long shower? Standing next to the oven???
• tight/abrasive clothing—turns out, I don't know how to dress if I can't wear jeans. This is why I've been wearing the same floral trousers or dress since February. Can't wear a proper bra either
• standing up—waiting for a bus? Going to a gig? Standing in a queue at the post office?
• walking—literally any walking. I don't get the tube to work anymore because it's more walking than getting the bus
• stress/anxiety—which it causes, too. Obviously (unhelpful)

I mean, that's basically life, isn't it? This condition is a physical one, but its impact on your mental health is considerable. Your social life suffers, and your confidence takes a hit when you can't wear what you want, can't do any exercise and your skin looks like you have something contagious. You feel ugly, frustrated and isolated and that's before you take account of the physical discomfort. It's a horrific thing to have at the best of times but when you're recently 30, single, and your life revolves around being out and doing things, it feels like it's holding you back from everything. 

So, thank you for bearing with me. For not pressuring me to drink, for finding me seats when I need them, for checking up on me, for accommodating me in diet and other things. For nodding along when I go down another ludicrous path of investigation. For getting Ubers for a pathetically small distance because I can't walk. For tolerating my need to be chilled out sitting at the back of a gig rather than in the thick of it. For understanding when I cancel for the 100th time. For letting me work from home because my ankle won't fit in shoes or because underwear is just too much to take on that particular day. You've all made it easier. 

Thank you to my Grandad. The last time I spoke to you, all you wanted to talk about was how I was doing, even though you were in a lot more pain than I was. I miss you.