Where I went to this time

Wednesday 25th January

Pain.

It's surprisingly easy to live with pain.

I didn't say it was fun, or exciting or glamorous, but living with pain, yeah that's do-able.

It helps if it's not that sudden pain, like a toothache or a broken arm or something minor like that, but a steady building pain that grows that little by little every day.

Every day is much like the one before it, and even though eating, moving, walking, sitting, sleeping or most everything that you can do hurts, it only hurts that much and face it, it could always be worse, couldn't it?

So be thankful for what you have and remember that there is always, always someone worse off than you.

In fact, since there's someone worse off than you then is it really worth complaining? Probably not. Besides, we're British and we like to keep the upper lip stiffened do we not?

The doctor does do a good line in painkillers though, and maybe that will see you through.

There came a time though when you have to admit that it's all a bit too much. That's the time when you own up to the doctor that you're actually really in trouble.

When you admit that your back and belly are a constant source of agony.

When the heavy-duty painkillers last for a half hour at best if you can even feel them hitting at all.

When you're living on bursts of less than two hours sleep at a time, and constantly wake up in the middle of the night in agony, and very little hope of getting back to sleep again afterwards.

Early December those were pretty the words I used to the doctor to get me admitted into hospital for the … sixth? time in the past year. I lose count. Seriously.

Every day I spent getting more drugs pumped into me as they tried to get the crohn's disease under control. It's obviously the crohn's disease, and we can fix you by fixing your blood. Day by day you get more irritated, lonely and bored, but day by day we can fix you.

For weeks.

I love everybody that sent love, and appreciation and best of all visited, but weeks in a hospital can really grate on your mind, especially when you're still in pain and still waking up in the middle of the night in agony.

Christmas.

Christmas came and went while I was in hospital and as much as I love Christmas I wasn't going to risk my getting better by discharging myself and hoping for the best, so I stayed in hospital, same as I did for my birthday. I did redeem some sanity by getting two day passes from the ward, one for Christmas eve and one for Christmas day, to spend with my fiancée and family respectively. But at the end of each day I would return back to the ward.

New Year.

The day before new years eve I woke up in the middle of the night… and was not in pain. For the first time in months I was not in pain in the night. I rolled over and went back to sleep. My doctor and I agreed that one night is not enough proof but two would be, so we made plans.

On new years ever I had had two nights running without pain and was ready, after three weeks, to leave. I decamped on new years eve at 10am with a skipload of bags and books and stuff to go home and enjoy myself and relax.

I wasn't planning on going out that night but after a very long and unexpected afternoon nap I felt warm and refreshed and so that night I pulled on my dressing gown, picked up a towel and went to a friend's houseparty. I didn't drink but still stayed out until 2am.

The following Monday.

That Monday I had friends come to the house. I was aching a bit, but this was nothing new. What was new was that it didn't wear off, not at all. After they had left, through bedtime, right into the deep of the night, the pain grew and grew and didn't wear off. Not at all. It got worse and worse until I gave up at 2am and had to retreat to A&E.

I couldn't get any relief, no matter how I sat or stood. When I got there, the only way to get around even the small reception area was to get a wheelchair and be pushed around, wailing at every bump and jostle.

Within twenty four hours I had been scanned, x-rayed and poked and prodded and set for emergency surgery. The doctors were a touch concerned when even the lightest touch on my belly made me scream, spasm and look to punch whoever it was that had just seemingly stabbed me.

The theory was that when I had the surgery in July they had found two parts of my plumbing that were active with the crohn's disease. They cut out the really bad one and left the small bit because the small bit was a lot further up and wasn't that bad. The theory was that the small bit was now in overdrive and so they would have to cut that bit out too. And I would have to have a second stoma site, but much nearer to the stomach.

This was not good news.

It meant that my body would be even less able to deal with nutrition and so on and god only knows what intensive treatment I would need after this surgery. But they needed to go in and go in now.

I went under again and woke up in the recovery room in agony. Again.

I was so badly off they kept me in recovery for a long time until something calmed down a little and to make sure I didn't need cutting again.

Six hours later I was stable enough to move.

Over the next day or so when I could move my head enough to look, my belly looked pretty much the same as it did before, though maybe a little flatter. There was certainly no bag in a different place. Something didn't match here.

Two days after they actually told me what they found when they went in.

It wasn't the other bit of bad plumbing. It was the entire length of pipe had decided to go walkabout.

To put it bluntly (look away now), my intestines had found a way of wrapping itself around the original stoma output pipe, and had wriggled into position so that over time it was so constricted it would only let out liquid. And then only air. And then nothing at all.

My intestine was a noose that was strangling itself.

This can cause pain.

And, you know, worse, if left a bit too long. But hey, you know there's always someone worse off than you.

They put everything back into it's original place and added a couple of stitches so that it couldn't happen again.

The funny part, if you can call it funny, is that it was so unusual that the doctors never would have looked for it directly and with it being the soft fleshy parts then the scans and xrays looked right through it without it being discovered. The only way to see it would be to go in and look. Thankfully they did.

Though I am getting really fed up with doctors looking at my case and saying "ooo, that's a bit weird."

From there on in I'm back to where I should have been in August, recovering slowly.

The following Wednesday.

I suppose the story is not complete without telling you what happened when they took the last of the wires off. A week later I was recovering quite well. They took off the PCA (the morphine button), the catheter (look it up) and finally the central line (the tube into the neck). So there I am, wireless, bored, full of energy and a touch twitchy. I've seen a physiotherapist a couple of times to gauge my walking and doing quite well, but it's time to put it to the test.

I stand up.

I walk to the bay doors.

I walk to the end of the ward.

Now at this point I realise that anywhere I go to, I've got to keep enough energy to get back to my bed. But I have energy to burn.

I walk out into the corridor.

At the end of the corridor is a big picture window to the outside world. It's about as close to the outside world as I was going to get and a damn sight better than the walls I've been staring at for a month now, with very few exceptions.

I walk to the window.

I see… darkness, rain, and my own reflection due to the interior lighting. It was a bit of a let down.

Though what was strange was the tiredness I suddenly felt. So I sat down on the small step there. A passing nurse asked me if I needed any help, and being sensible I said yes, and told her what ward I was from.

That was the last I remember before being surrounded by a dozen doctors and nurses, lying on a bed being wheeled back to the ward.

I had collapsed. Quite spectacularly apparently. I had even pinned myself between the barrier rail and the window. And the stoma bag had burst, making quite a mess.

Over the next six hours I was scanned, poked, prodded, checked, put an oxygen mask on, catheter back in while conscious (not fun), ECG, the works. I did feel alright, and proved this to a doctor who asked the standard 'are you mad' questions by naming myself, my doctor, my bed number, the ward number, the hospital, the hospital's address, the date and the time within ten minutes, though I admit that was a lucky guess. It did impress the other doctor at my side though.

But things being what they were, they moved me to the High Dependancy Unit until they worked out what had happened. I won't complain because there they do look after you well and they did give me a new toothbrush, a simple act I could forgive them any sin for.

Finally the doctor gave me two possible options as to the cause, because they never found a conclusive answer, like a blood clot. The first option was simple dehydration, which I will cast aside as pure bullshit since I know what dehydration feels like, even a severe case.

The second option is that when the central line came out, an air bubble went in and worked its way around to my lungs and then stopped causing an air embolism, causing my heart to go into overdrive causing me to collapse.

Oh well, shit happens.

Seriously, I don't know how close I came to being dead, but I didn't, so we move on.

Seriously, shit happens, we get over it.

Now.

I spent a day in HDU. I spent another few days back on the ward. Then I went home. I'm there now. And life is different.

I sleep now.

You would not believe how good that feels. I don't think that I have properly slept in months, maybe years, like I'm doing now. I go to bed, I read maybe a page, then I sleep. Sure, I wake up occasionally, but I just roll over and go back to sleep.

I even dream again. I'm loving it.

Most importantly, I'm not in pain.

Well, I ache occasionally. My back is still a little sore, but its manageable. And the painkillers I have do the job they're named for. They kill pain. Does exactly what it says on the tin.

Pain. You can live with it, sometimes for a very long time.

It's still something better to do without.

This Life - Horizontal

Monday 5th December

There is an upside to being a cripple.

Honestly.

Alright, the primary advantage is that I get to spend the majority of my life sat on the sofa in my living room. Whether I'm in pain or not I get to sit there, sometimes uninterrupted for days.

I sometimes wonder how long it would take somebody to discover my bloated corpse until I realise I still get bothered by people every day, damned loved ones.

Actually, on a serious note, if you know someone who's housebound or doesn't get out very much, give them a call. Just because they're not in hospital doesn't mean that they don't get lonely.

Seriously, give them a call.

Damnit, give me a call while you're at it, I won't be far away from my phone, I'm on the sofa.

Anyway, being sat there gives me two great advantages. I can watch and play whatever the hell I like, and with my happy pills and psychotherapy and after talking to people I now feel a hell of a lot less guilty about not doing anything productive while I'm there.

I was going to do NaNoWriMo, the thing where you write a book in a month, specifically during November. Well, I was in too much pain to even have a single day set aside for that and now it's December. A year ago I would be beating myself up about it, now I just look at it as a time when I could have done stuff, but I did other stuff instead.

Like watched TV.

Or played video games.

Wonderful wonderful games.

I'm even planning on reviewing a few films and Games for you here.

Planning on doing so. I'm making no promises. I'm no longer that stupid, though I am a great deal more mellow.

Did I mention that I've been told by my doctor to quit smoking? Well he did. It's apparently REALLY REALLY REALLY BAD for my conditions. Plural. So I quit. Again. As of two weeks now. The 22nd of November to be precise. Yes, I hate it. Yes, I'm really trying again. We'll see.

The worst part about that is that I'm still feeling pain. I thought doing good things is supposed to make everything instantly magically better?

Shame on me for thinking that.

Dracula's still happening, by the way. Harker is back in chapter 14, which should be in a couple of weeks time.

Oh, and if you're really bored have a look on youtube for 4oD Hollyoaks Delivery and look at the guy with the furry hat. Just Saying.

My back still hurts.

Woe is me.

Heh.

Yeah, I remember exactly what I said about sympathy that time. I didn't say I was expecting any.

Catch Ya Later Bill N Ted.

Breaking News

Tuesday 8th November

Non-existant food is now toasty warm.

The New York Take Away Diner Car Wash burned down last Thursday night. In an early start to the bonfire night festivities, some enterprising soul sparked off a blaze that I happened to drive past as I was on my way home from Manchester for the fourth time that day. Rumours of arson and/or insurance scam cannot be confirmed because I have absolutely no evidence for either. All I can confirm is that the place is now a burned out shell of a dingy tin shack.

The Statue of Liberty still stands outside, though is a little more grubby now.

--**--

Massage helps back pain.

I have been suffering from inconceivable pains for the past few weeks, leading me to seek assistance. In terms of the belly, scar and stoma pains I now have a varied and wide selection of painkillers, some of which quite a bit stronger than others, but the best one is that I happen to know a couple of people that work wonders on spines. One of which I will be seeing tonight. Again.

--**--

Surgery scheduled.

In another 78 days I will be going under the knife again. On the 26th of January I'll be heading once again into the MRI to get my illeostomy reversed. I am literally counting down the days. Unfortunately I'll have to deal with my current position through the holidays, but you never know, it could all be rainbows and gravy from there.

--**--

Brains spread all over the campus.

For those of you interested in being a GM, or a better GM, I'll be lecturing on how to run games and the intricacies of mastering of games at the MMSU on the 20th of November. Lecure starts at 2, get there early to be sure of a decent seat.

--**--

Dog of Corn still missing.

I'm still looking but it looks like I'll have to make my own damn corn dogs if I want one this side of the next century. Though I am planning on a trip to the states at some point in the next couple of years. Or should I say dreaming. Any suggestions as to where I should go and why?

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