Freedom tastes like fermented milk

So. I'm like... cured. Almost. Close enough. 

I was sort of aiming to use this blog as a symptom/treatment diary, or some other self indulgent bullshit, but... um... apparently no need for that now. 

I know, right? How the fuck did that happen?

I'm no fan of summer at the best of times but May, June and July were not my friends. There were some good times, but essentially, that part of summer sucked. Heat sucked. Sun sucked. Summer clothes sucked. Summer sweaty nights sucked. You've heard all of this before.

I joined some Facebook communities of people with CSU. All were basically the same - a group of miserable people living with the same inexplicable condition, sharing information and tips and generally a safe space to moan where everyone really does understand what you're going through. 

Lots of people in these groups have had CSU for years. They've had every test under the sun. They've tried every antihistamine or immunosuppressant going, and all the different combinations thereof. Many have gone into remission only for the condition to return later down the line. Lots of people are understandably fed up with conventional medicine's inability to come up with an answer to 'WHAT THE FUCK IS WRONG WITH ME?'. 

Lots of people, in their desperation, have come to the conclusion that the answer is in the gut (see leaky gut). Their belief that their gut is damaged has lead them to live on a very restricted diet in an attempt to help it heal. 

I quickly rejected this idea largely because I'm lazy and like food, but I'm also incredibly dubious about the science - leaky gut isn't recognised by the NHS and to me it seems like a way for unqualified 'nutritionists' to get money out of desperate people.

There were also a couple of people saying they'd been drinking kefir milk and had seen some improvement since. Again, I was skeptical and filed it under 'meh, not for me'.

Until, that is, I read this article in the Guardian. The crucial bit says:

'However much we may like junk food and chemical additives, our gut bacteria does not – and our increasingly narrow diet has led to a similar lack of diversity in our gut. Tim Spector, professor of genetic epidemiology at King’s College London and the author of The Diet Myth, explains that if we “wipe out our gut microbes, then our immune system goes into autodrive and starts attacking us with autoimmune diseases and allergies”.'

Essentially, we're talking about probiotics - introducing that healthy bacteria that we're missing. We've all seen the adverts for yakult and 'good bacteria'. Same thing. Fermented products are a source of these bacteria.

Conclusive proof, this is not. I'm aware of this. But, it was a real doctor saying these things and I now have three conditions with strong links to autoimmunity (CSU, vitiligo and a borderline underactive thyroid). Giving up 101 different things is hard and unpleasant, but trying a couple of new ones can't be so bad. So, I figured I'd give it a go - what's the worst that can happen?

I started drinking kefir on Friday 28th July, and I've been having it daily ever since. 

Kefir is fermented milk. Sounds gross, but it's basically just a more potent yoghurt. I've been drinking it straight, putting it in smoothies or making overnight oats with it - because I'm a hipster, obviously. Stick some cocoa nibs there for full wanker effect.

The hives had almost entirely cleared by Monday 31st July.

Yes, I still get the odd few spots and I have had a couple of minor relapses - but crucially they have actually been minor. 

I've been able to rejoin the gym and take up classes again. I've had lots of drinks. I'm eating whatever the hell I want. I'm able to stand and walk around with no limitations (hello, shopping...). My wardrobe is finally able to ease away from horrific floral trousers and unflattering sacks. I'm going to start weaning off my 4 x daily antihistamines.

It's still early days and I'm trying to manage my expectations, but christ. It's been 6 weeks and I'm still walking around with a grin plastered onto my face.

The worrying thing is that lots of people with CSU are avoiding fermented products because they're high in histamine. I certainly was. So, if a lack of those bacteria is what's causing their hives (though I suspect there are a variety of causes), all they're doing is making it worse. 

Anyway, hopefully this is the last you'll hear from me on this. I'm bored of it, even if you're not.

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.