vasculitis « Pete Hindle

May 26, 2010

It’s Not Good to be Back

I lay in bed on Monday night, feeling pretty weird. I’d been back in Newcastle for four days, which is the longest I’d been away from home since I got sick. Unlike before, I’d taken it pretty easy, and restrained my impulse to schedule a dozen meetings for coffee every day. In fact, by most standards, yesterday had been great – I’d seen my girlfriend, went for a walk in the park, hung out with my flatmates, been to a cafe for lunch, and packed in a few other things too. So why was I feeling so weird?

Six months ago, my Dad had driven to Newcastle to pick me up and take me back to my parents house in Biggleswade. I’d just got out of hospital, but I was far from well; I had a mysterious rash that covered my entire body, I was weak, and parts of me were swollen with arthritis. We all thought that these would go away (and I mean everyone, from doctors to parents to friends, right down the line to me) but three weeks later I was so sick I got dragged into hospital again*.

Somewhere around the 7th of December, I woke up on a hospital ward in Bedford and then had a massive rectal bleed. That mysterious rash that I mentioned earlier was the start of my vascular system shutting down, and when it became unable to pump blood around my internal organs, it started draining out the quickest way possible. Luckily, doctors were able to save my life, otherwise I wouldn’t be able to write this now.

I’ve spent the entire year so far recovering from that event. I’m a lot better now, but there’s still some lingering side effects – like fatigue, meaning that I get worn out from doing the simplest things. I’m not strong enough or well enough to live in my flat at the minute, and it doesn’t look like I’ll be well enough for another few months, by which time the lease on my flat will be over.

If I’m not well enough to live in my flat, you can bet I’m not well enough to work. As I was technically still a student when I got sick, I can’t have any welfare from the government – but I’ve obviously still got bills to pay. It looks like the only place I’ll be able to afford to live for a while is my parents house.

So, that night when I was lying in bed, it felt like I was moving out of Newcastle. Usually when you move it’s because you make a choice, and because you want to go somewhere new. This isn’t like that, and my reception on getting off the train at Biggleswade Station (nearly getting into a fight the very moment I stepped off the train) confirmed how I felt: I’m here, but I don’t want to be here.

* I don’t know why, but I always seem to get taken into hospital on a Friday. It’s really annoying – I assume that I’ll be fighting my way through an emergency room full of booze-damaged drunks.

May 2, 2010

State

Wednesday was a bad day for me. I’d been carrying around a broken tooth, and leapt out of bed to make an emergency dental appointment. I then fixed breakfast and was just starting to gingerly chew my toast when I got a call from the benefits agency who told me that I wouldn’t be getting any money from them.

It took them a while to explain this to me, and when they were done my toast was cold. I hate cold toast.

The problem is that I made the mistake of getting ill when I was studying at university. I’m still ill, in fact – still in recovery from something that took me within a few hours of dying, six months ago.

I’ve put off making this post because I’m angry about it, and I don’t think I’m going to stop being angry about it. Because I was a student I don’t deserve help? I expect that attitude from bigoted chavs, not the government of the country I live in.

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December 27, 2009

Health Update 2

‘You have to get well. Being ill is like being attacked, you see? Your body is like a great fortress that has been besieged by invaders. You’ve repelled them, you’ve seen them off, but you have to be good, and marshal your forces and rebuild the walls, refurbish your catapults, clean your cannons, restock your armouries. Do you see?’

Iain M. Banks, Inversions

As I mentioned earlier, I’ve been unwell recently.

It turns out I was a lot sicker than I thought. This December has seen me go back into hospital, where I almost died from a massive hemorrhage. From there, I was diagnosed with a very rare illness (in the vasculitis family) and told that I’d probably been suffering from this illness for at least six months.

The only near-death experiences I’ve had prior to this have been the result of my own stupidity, but this time wasn’t my fault. There was nothing I could have done, nor was there anything that the medics who’d seen me earlier in the year could have done. Vasculitis is staggeringly rare; so rare that they don’t even know what causes it, and I was well out of the age range for people who usually suffer from my specific strain of vasculitis.

At the time, I didn’t notice nearly dying. I was busy, or – more accurately – distracted. In fact, I only realised how close to death I’d been after a few days, when the nurses who’d looked after me during my hemorrhage came back on duty and were fantastically happy to see me. Why?

Because they thought I was going to die, and I didn’t.

Make no mistake, this was a catastrophic breakdown of my health, and although I’m trying not to be dramatic about these events it’s hard to convey how much of a near thing it really was. Would it help to tell you that I couldn’t eat for six days after the hemorrhage, and was attached to several cannula’s and a catheter? Or am I being too revealing?

I don’t think what’s happened to me was a bad thing; in fact, I’m grateful for the experience. I’m still ill, and I’m told my recovery will take months, but given the alternative I’m happy with how things are going now. I’ve had a fantastic Christmas with my family, and my friends have been amazingly supportive. In fact, I should say that there’s nothing more life-affirming than not dying.

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Pete Hindle