illness « Pete Hindle

November 5, 2010

The Mystery of the Five Coffee Shops

I should be writing my NaNoWriMo novel right now, but I’m finding it hard. Don’t worry, I’m not going to bore you about my scribblings; the reason I’m finding it hard is because it was a year ago that I went into hospital. That was the start of the trail of events that led me back to my hometown, Biggleswade, where I am forced to visit the five coffee shops.

That hospital trip a year ago saved my life, and I am eternally grateful to certain individuals who bundled me into a taxi and made me go to hospital. However, the illness itself was so severe that I have only now just come off the medications I was put on, and it will still be a long time until I am well enough to work. Because of this illness, I now live 250 miles away from nearly all of my friends.

Like I said, it’s been a year now. That year has been a long time for anybody in Newcastle; they’ve all been busy, and where I’ve been watching Star Trek: Enterprise re-runs in my pyjamas, they’ve been working hard. I have had literally nothing to fill my time this year, and anything I have done has tended to make me exhausted… leading to more time on the couch in my jimmy-jams.

Let’s just say I have high hopes of completing NaNoWriMo this year.

One of the pieces of advice that NaNoWriMo headman Chris Baty recommends working in a coffee shop, where you can pick up interesting stories about characters. This is completely not the case in Biggleswade, where there are an amazing five coffee shops within two minutes walk of each other. It’s like a vortex of coffee, but not in a good way!

The mystery of the five coffee shops is that none of them are particularly good. I cringe when I write this, because I expect my favourite shop – the one on the corner, that used to be an off-license where I used to work – to find this humble blogpost and beat me round the ear next time I pop in. However, I would like to assure them that they are much better than the rest, especially the small one on the other side of the town square, who made me a coffee so bad that I almost couldn’t finish it.

I miss my old life in Heaton when I think about this. I miss being able to bump into people I knew and liked in local coffee shops. I miss being able to have conversations with people about the things we liked, such as art. And coffee. I’ve tried to get to events ’round here, but they are too few and far between and to hard to get to – there just isn’t much to do without resorting to going into London, which is extremely tiring and quite alienating.

I’ve worked out it’s going to take me at least another year or two here before I can leave. I’ll need to work, and save up a war-chest, in a town which doesn’t value any of my skills apart from “could lift heavy boxes” (the Bedfordshire region does not need any trained gallery assistants). Maybe by the time I can leave this mangled idea of a town, I’ll have managed to solve the mystery of the five coffee shops.

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July 19, 2010

The Storyteller’s Voice

I’ve been trying to write a blog post about my illness, specifically about the night that I nearly died, for a while now. It’s a story I’ve told to my friends over and over again, and despite it’s grim subject it’s something I can rely upon to have people laughing out loud.

Trying to make that story come alive in writing is something completely different. I don’t know why – maybe I’m just not good enough with written words. But whatever the reason, I just can’t make the story really ‘pop’ when I need it to. Parts of it that are hilarious when spoken out loud come across flat and dull when in a written form, and after a few separate attempts to squeeze it onto a page I’ve given up.

One of the reasons it’s such a fantastic story is that I’ve told it so many times. I now live far away from my friends, and aside from a small number of people I keep in touch with via email and phone calls, I don’t see a lot of people. When I do get back to Newcastle, I usually go on a socialising splurge, trying to fit in seeing as many people as possible. This usually means updating people on why I’ve been away, and/or what’s wrong with me, and why I get so tired now, and to help me do this I fall into a shpeel which rattles through various points of my health failure until I reach the present.

But this shpeel, this story, isn’t really being told in my usual conversational voice. It’s a tale that I tell people, something I share with them, and when it’s finished I stop being a storyteller and talk with them. I like to find out what they’ve been up to in the months that I’ve been away. The storytelling “voice” I use when relating my tale is similar to the written style I use here on my blog – which, again, is not the real me.

The best blogs are blogs that have a focus, like Lee’s printmaking blog, or Mike’s blog about his trip to the birthplace of Russian Anarchy, or Brenda’s blog on her photography practice. Currently, when I blog I have no real focus but to tell an amusing story, and in doing so I’ve let the story-tellers voice become confused with my own when working (and writing) online. I actually get a lot of compliments about my blog, and the style of writing that I’ve used on it, which is really lovely. But I need to try new things.

I’m not sure what those new things are, but I have to stretch myself. Writing in this semi-voice, this tonal range that sounds like me but isn’t quite, is starting to impose limits on the things I can say – and the things I can’t. So it’s time to change.

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June 11, 2010

Getting Things Done?

Yesterday was a trip into London to meet up with my mother for lunch, and then look at some art galleries and bicycle shops around the Brick Lane area. It was nice to get out of the small town where I usually find myself, but after the bike ride on Tuesday I rapidly became too tired with all the walking that being in the capital entails. I took a train back to Biggleswade, and went to bed early.

Another odd thing about fatigue is that after a certain point of tiredness, it’s hard to get a good nights sleep. During the night I kept waking up with an enormous headache, like somebody battering me with a steel bar. I woke up at six and fixed myself breakfast, before going back to bed for another few hours. That headache is still lingering around, occasionally rubbing up against the left side of my brain.

When I woke up for the second time, the post had brought my appeal against my medical assessment. Apparently, because my original medical assessment didn’t show that I had fatigue I don’t have fatigue. Yeah, and the first rule of tautology club is the first rule of tautology club. Thanks a bunch, whoever was in charge of that.

The good news for the week is that I won’t have to pay to go back to university. Huzzah! Lets do a dance. A predator dance:

Truth

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June 7, 2010

Magic Butt-Money

Wondering how it’s going with my health and general welfare? Here’s the important news in a nutshell:

I will not be given any money from the benefits agency and I will have to pay to go back to university.

I got these two pieces of news today, when I seem to be suffering from one of the worst bouts of fatigue in a long time. Funny thing about fatigue: it sort of sneaks up on you. You can think you’re fine, until you try and make sense of the wardrobe options in B&Q, and then you realise that you’re too tired to move properly and end up in a Cafe Nero in St Neots, licking chocolate tortina from off the wrapper because it’s half term and the manager is at home looking after the kids so some sixth-formers who work there forgot to put anything in the chiller.

Unless I suddenly start to be able to pull money out of my butt, it looks like I’ll be staying in Bedfordshire for a little while longer. Actually, pulling money out of my butt sounds like an updating of fairy gold (or, possibly, a term used in the porn industry). I think we can all guess what magic butt-money turns into at sunrise.

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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.

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May 19, 2010

London Trip

Yesterday I took a trip into London by myself. I’d arranged to met up with Jock Mooney, who made this video:

We spent a few hours catching up, and then I set off for Camden’s juggling shop, Oddballs.

I’m not really into Camden. Maybe I’m too old, or maybe I’m just not sold on the commercial aspects of the area, but it felt like I was walking into a permanent half-term. Coming up to street level I was looking at the folk heading down into the tube, and by my reckoning it was a ratio of roughly three kids to one tramp. Once I reached the surface I couldn’t work out how to split my ratio between kids, hipsters, tramps and aging punks, so I set off to the juggling shop by walking half a mile in the wrong direction.

After figuring this out the hard way, I turned back and eventually made it into London’s only juggling shop. It’s tiny, and I had to dodge not only somebody flinging some pink fluffy poi around, but a white guy with dreds and a black eye demonstrating the basics of 423. Juggling might be something I do as a hobby, but it really does attract the “skeezy geezer” type. I made my purchases and beat a hasty exit.

This means I now own a total of eighteen juggling balls. Five regular balls, three bouncy balls (one of which has disappeared), four large thuds and my six new regular thuds. Thuds are slightly squishy bean-bags which are named after the noise they make when they hit the ground. Unlike regular balls they don’t roll away, making them easier to find.

Of course, I can’t juggle 18 balls at once. On the Dancey juggling index, 18 balls in two hands has a difficulty of 8.5263. This is determined by the equation

d=b/(h + h/b)

where d is difficulty, b is the amount of balls, and h is the number of hands doing the juggling.

Using this equation, throwing a ball from one hand to the other has a difficulty index of 0.25. Therefore, anybody who learns to juggle 18 balls at once would be some sort of ubermensch of juggling. Anyone smarter than me who wishes to test my maths on this could check out Jack Kalvan’s paper on the subject, but everybody else could just check out this amazing example of teamwork:

After about five hours of being in London I was physically and mentally shattered. I’m still in recovery, and I know the price for this short trip is going to be spending the next few days resting on the couch, despite the fact I did very little whilst in the city. This makes me feel like mild-mannered Clark Kent, only without the interesting day job at the Daily Planet.

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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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March 31, 2010

I went to Newcastle and all I got was this lousy fatigue-based medical issue

Last Thursday I went back to Newcastle for the first time since November. I spent a short weekend back, celebrating a close friend’s birthday and gathering some of my possessions (because I’ve been living out of a backpack for the past five months).

Although I thought I was ready to start getting out again, I’ve found myself completely flattened by the experience. I guess I have to be a lot fitter – a lot healthier – then I am now, before I can pick up my old life. The only way I can explain it is like when you’re tired after some hard exercise. Except I don’t pick up after resting. This is my third day of resting up after my trip, and I’m still very weary.

Which really sucks, because the last thing I want to do is be stuck on the couch.

I might put a few posts up explaining what happened to me, as my medical crisis was both hilarious and gory. So when I can unstick myself from the couch, where I’m watching my way through these Star Trek box sets I brought back, I’ll update my blog with something a little more exciting than a post about shoes.

Addendum: I’m not actually that happy with this entry (hey – no links and no pictures?! Does this still qualify as a blog post?) but I’m just so knackered right now that it’ll have to do. It’s not like I can improve it with a picture of my couch.

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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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December 1, 2009

What I Did With My November

I’ve been sick all November. And when I say sick, I mean puking, wailing, bed-ridden sick, not “a little bit of a sniffle”. I even spent five days in hospital, and when I got out my friends and family noted that I was too sick to look after myself and packed me back to my parents.

Despite being bedridden for the entirety of the month, it’s still not entirely clear what’s wrong with me. In fact, my current medical state seems to be a continuation of things that went a bit screwy earlier in the year. I won’t go into it – it’s variously disgusting – but the start of November saw me needing some intense medical care.

I went to the doctors several times before being admitted to hospital. It’s not easy these days – I walked into A&E to be told I should go to my GP, but twelve hours later I was lying in a hospital bed. Not because of the GP either; I got to see a nurse at my local practice who told me I was dehydrated and gave me a glass of water. It’s true, I was dehydrated – but it was from sleeping 20 hours a day, uncontrollably, while my body tried it’s best to heal itself from whatever internal stuff was going on.

Medical crapness didn’t stop at the hospital door either. Once in hospital, I surprised a number of doctors by arguing and using logic (the line “it’s not a virus, because I’ve had it since at least June” caused a number of junior doctors to look surprised). I mistrust the medical profession about as much as I mistrust anybody who doesn’t want to continually hand me coffee, and so the various xrays, endoscopies, and insertion of needles was endured with suspicion.

This wasn’t helped by the fact that the first night I spent in hospital, I had a drip mis-inserted into my arm. Thankfully, saline solution is completely harmless, and people more kinky than me use it to inflate various… body parts. I just ended up with a bicep that looked like a kidney bean, but I was too generally unwell to really care.

I’m told that my recovery is going to take a long time, and since getting out of hospital I can count the number of times I’ve been outside on one hand. Pretty much everything I was doing is on hold, and I’m finding it difficult to keep up with a lot of things, including online social networks. Recovery is happening though, it’s just slow, so you’ll excuse me if I crawl back under the blankets now.

See you in the new year.

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Tag: illness