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Posts Tagged ‘pain’

I’m sure everyone you know on Facebook or Twitter is doing something like this, but I thought that I would jump on the bandwagon and have a go.

2012 has been a odd but very good year for me. And there is one reason for this: All of the support that I have got from my friends, both old and new, and those around me. Really, this year could have gone a very different way without you all.

I started the year having just about come back to a normal colour. All my jaundice had left me and I was an amazing 11.5 stone.

I want to put this into context. I haven’t been 11.5 stone since before I was 11.5 years old. I have always been a ‘big lad’, ‘built for rugby’ and ‘a little chubby’.

That’s not to say that I didn’t carry it very well, but for me, being 11.5 stone was shocking.

At the beginning of the year I had just started to return to work. I was planning to work my way up from 1 day per week all the way to full time again. This was the plan.

However, this never quite happened. I got to 3 days a week and found that every time I tried to go up to 4 days per week, I just couldn’t do it. The tiredness would come back and the yellow would start appearing at the edge of my eyes again.

This is a pattern that would follow me through the year. Whereas now I can, maybe, at a push work one full week, I will pay for that the week after.

This is just a lovely reminder that while I am ‘better’ I am not ‘well’. There is damage to my liver and I am not quite a whole person.

But it was while I was panicking about what would happen in my job if I couldn’t make it back full-time, I received a phonecall from someone I knew through the electric car world. Offering me a job! They were happy for me to work 3 days a week and I got to work in the charity sector helping the adoption of something I firmly believe will help us all.

Result!

On my two days off per week, I had my side projects. These are the ‘Mark Fun Things’ which I hope that one day will turn into ‘Mark gets paid for’ things.

I showran and produced a second series of Supermarket Matters, my online audio sitcom.

This had it’s ups and downs but as always I loved every minute. I can’t say thank you enough to everyone who helped with this, from the people who supported our funding campaign, to those who we’re involved in some aspect of its creation to those who listen to it.

I owe you all more than I can express here! Thank you so much.

The production company I set up, In Ear Entertainment, that Supermarket Matters is released under, also started work on a couple more projects.

0D Cinema is an evening in a Theatre in Cheltenham where you will be treated to a Science Fiction Double Feature. This will take place in the Parabola Arts Centre, Cheltenham in March next year and I am writing the two scripts for this.

Also, the Shakespeare’s Sonnets podcast was started. A good friend and I are going through each of the Sonnets and looking at them from an non-academic view point. It is great fun and very funny. We are getting up a fair following, so give it a listen if you haven’t.

There are also three other projects that have been being planned but aren’t quite ready for public release yet. But do stay tuned.

Along side this I was asked to stand in and co-host a weekly video podcast on Electric Cars. Transport Evolved really is the news show for electric car news. I hope that I have been received well as a co-host. I know that I enjoy doing it.

Finally, I have been writing a weekly (ish) column on geeky TV on sidekickcast.com for the past couple of months. This has allowed me to rant about such things as why Amy is a horrible companion in Doctor Who and what geeky TV shows you are missing out on.

And, maybe the scariest thing I have started this year: Stand up. Yes. I get up on stage and I make people laugh. At least, I try to. And from what I can tell, I’m not too bad.

Don’t get me wrong, I’m no TV comic. But I can hold my own, it seems. This has had a huge effect on my writing. If you are a comedy writer, do get up on stage and try it. It will teach you more about joke construction in 10 minutes than scriptwriting does in a year.

I’ve missed things out here: A few articles I’ve had published, a script of two I have written just for fun and most importantly, all of the plans I have for 2013. You’ll just have to wait for them.

As I said, I have all my wonderful friends to thank for the above. Without your understanding and help I would not have been able to achieve any of them.

In terms of my health, my itching has gone – which is nothing short of a blessing. You have not experienced itching until you can’t feel a pen you are holding in your hands because the itching coming from them is blocking out all other input. That is itching.

But it’s gone now! Wooo!

I still get tired, as I mentioned, and every now and then I will lose my appetite for a week or so. This is, I believe, infections in my bile ducts.

I can cope with all of this.

But what I am sure you are all aware of as the worst part of my illness is the pain. This is something that would only happen for a day or two each month at the beginning of this year. Now, and over the past couple of months, it has been constant. I have to take painkillers every night, and while I try to make light of it, it hurts. A lot.

This is where the ‘Ask Mark Anything’ comes from on Twitter and Facebook and why sometimes I will chat rubbish at all of you. I am trying to distract myself. So, thank you for putting up for this.

The worst part of the pain is that I am so worried that I will become addicted to painkillers. That really scares me.

2012 really has been about getting my life back. I am now in a position where I feel I am getting back on track now. And this is due to you. If you are reading this, and have made it this far, you are undoubtable one of the people who I have relied on.

Honestly, I couldn’t have done this without you. You rule.

It may be soppy, and not the done thing, but I love you. Every now and then a friend will talk openly and honestly about what they were thinking when I was ill and I am so glad you were there but I am so sorry I scared you all like that.

I’ll try to avoid doing it again.

Mark

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I’m going to do one of those annoying looking back at the year posts, so you have been warned.

The year started with nagging. A lot of nagging. I had yet to book my yearly colonoscopy and I also hadn’t organised or sent out any invitation cards for the ┬ácivil partnership.

Calling in some favours from friends got the latter sorted and a call to the docs sorted the former. Soon enough people had been invited and I had a camera shoved up my bum – Note: The people were invited to the civil partnership, not the colonoscopy. There are already too many people involved with that if you ask me.

Everything got sorted for the civil partnership and it all went well. We both had a great day and words can’t describe how happy I was with the whole thing. I know that the phrase ‘happiest day of my life’ is cliched, but it is true. I was with the person I love more than anything (even pizza) in front of family and friends. Couldn’t ask for more.

But health issues were starting to crop up. In the couple of weeks running up to the big day I had started getting really tired. Also, when I breathed deep I was getting this shooting pain across my stomach. This, coupled with some yellow tingeing in my eyes was slightly worrying. I popped along to my GPs and had they took some blood to be tested.

They warned me that I could need to go into hospital but there was no chance I was missing our big day. On the Monday after the main event I got a call from the doctors saying that my bloods were much higher than expected and that I needed another blood test to see if that was just an error or random peek.

In the following week I had the new test – it was even higher – got more tired and left work early for the first time in my life. I was also starting to feel very sick all the time. I passed the blood results on to my specilists at the JR in Oxford. That night they phoned me and ordered me into the hospital straight away. They wanted me in that night.

I went, reluctantly, the following lunchtime as I had some work that I needed to do.

Form this point, things went down hill. I started to get yellow, got more ill and started losing weight rapidly. I also started itching, although this wasn’t as bad as it could have been.

In the first 6 weeks of my married life I spent half of the time in hospital.

I had many, many, many tests in the following months, eventually being told that I needed a transplant and the process for assessment was started. Unfortunatly, by the time I got to the assessment my health had improved and I have not been placed on the list.

But, and this is a big but, that paragraph above really doesn’t describe what it was like. I went from feeling fine at the beginning of May through five months of feeling very, very, very ill. Looking back, it feels like half of this year has been stolen from me.

But, since then, my health has improved. I am not perfect, I still get very tired and have pain, but I am heading back to work.

I have carried on with my ‘fun’ work. I am working on a second series of Supermarket Matters and we even managed to write and record two holiday specials Grab’n’Go-Ho-Ho and Ayld Lang Syne. Check them out on:

I also managed to get a chance to get on stage and do some stand up. It was an awesome experience and I have another gig coming up to try and take what I have and actually make it funny.

Now, you may be thinking that I have had rather a crap year. But no. Honestly. That one day – the day where I got civilised (it’s not ‘marriage’ as, y’know, the Government don’t like gays that much) – makes up for and far surpasses all the bad. I can honestly say, that even though a fair amount of bad stuff has happened this year, this is still the best year of my life because of that one day.

It may sound soppy. But it’s true.

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So, I didn’t manage to get around to post yesterday. Sorry. But I was recovering.

The big day.

It was with mild anticipation and a huge sense of dread that I set off towards the John Radcliffe hospital (JR) for my colonoscopy. Having had the procedure before (or proceege for those who have read Lie back and think of England), I knew what was coming. And what was coming was a nine foot camera right up the jaxie.

I didn’t go into the JR as my appointment was one of the specially selected few that had the privilege of taking place in the Mobile Unit.Picture of the mobile endoscopy unit at the John Radcliffe hospital

Yes, that’s right: A whole colonoscopy unit that can be packed up and moved around the country on a truck. Now, from what I can ponder, there are two major advantages to this:

  1. If they left it on the truck all the time, they could deliver patients home while they were having the proceege.
  2. If they combined this with the local mobile library, we could see a huge reduction in bowel cancer in the over 60s. ‘Free colonoscopy while you wait’.

I have to admit, I was scared. I mean, look at it. It looks like a deluxe portaloo. I walked in and the first thing they get you to do is sign all the scary forms which essentially say:

There is a chance, when we take biopsies, that we will perforate your bowel. If this happens you will be rushed into surgery and you will be cut open.

Nothing to worry about there then.

I was then changed into a lovely hospital gown. I believe this was from the Arse hanging out season of 2009; I believe it debuted in Paris as modeled by that scary bulimic girl whose eyes are too far apart.

And then I waited. And waited.

And waited.

Eventually, I was taken through and laid down on the table. One of those little tap things was put into my hand and I was asked to roll over and present my rear-end.

I did get some good drugs, which was a bonus:

  • 20mg Buscopan
  • 3mg Midazolam
  • 25mg Pethidine

This cocktail essentially gets you happy, makes you not care about the nine foot snake and makes you forget most things.

But as I was starting to enjoy the high, it began. And, oh boy did it hurt. Actually, no, it didn’t. Not really.

It was uncomfortable; of course it was. But it wasn’t really painful. By the time I had started to get interested in what they were doing it was all over. I am sure this was helped by the lovely nurse who talked to me constantly, keeping my mind off it.

But all in all, the worst part was the prep. In all honestly, as I must have these every year, if I had the choice, I would be booking that team up in advance.

So, now it is just the recovery. For the rest of that day I had amazing gut pain. This is due to the gas they pump into your bum to allow them to maneuver around the bends. These pains followed me though into today but they do get much better with every fart.

So the plan is to head into work tomorrow afternoon. My body still wants to sleep a lot, I guess that is normal after a fairly invasive proceege.

Oh, and for those of you interested: They didn’t see any obvious signs of cancer, which is good. They have taken some biopsies to take a closer look, but initial thoughts are positive.

I shall let you all know the results of the biopsies when I get them.

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One of the many bonuses of having primary sclerosing cholangitis is the fact that I am at a much higher risk of many types of cancer. </scarcasm>

Some of these, such as cholangiocarcinoma, are very scary. Cholangiocarcinoma is considered to be an incurable and rapidly lethal. It is also very hard to spot. So, that’s good! One of the less scary forms of cancer that I am more likely to get (never thought I’d ever write a sentence like that) is bowel cancer.

Now, this, if caught early enough, is easily fixed. In fact, as long as it hasn’t spread, in the worse case they can just chop out the bowel and let you poo into a bag. To ensure that I don’t get this, I now have to go for annual colonoscopies.

Think of this like Christmas, just without the present giving, food or any of the fun. Instead, think of it like a 9 foot camera being rammed up your… well, I’ll be crass… your bum. Now, I’ve had one of these before and I’ve had its baby brother: a sigmoidoscopy. At just 4 feet long, it’s the younger brother with a small man complex.

The time I went for the sigmoidoscopy I was ‘prepped’ in the hospital by a lovely Polish lady.

*Flashback wiggly lines* I nervously walked into the room. In this order, I see: an overweight polish lady, a bed covered in that blue paper they always have at hospitals, a sink with what looks like two baby bottles warming in it, and a chair with a hole cut out of the seat with a cardboard container below it.
‘Don’t worry. For people who don’t make toilet’ she said.
‘MMhhhhnnnnnnn.’ I replied. Not taking my eyes off that seat.
‘You are here for proceege?’ I take a wild stab that ‘proceege’ is her way of saying ‘procedure’.
‘Ummm, yeah.’
‘Lie down, face wall, knees on chest.’ As this is a hospital, I was, of course, wearing one of those lovely hospital gowns with no back. So, the lovely Polish lady had a perfect view of my bum.
Not just a perfect view it seems; also a perfect approach.
Quicker than a flash I had not one but two baby bottle teats shoved up my bum and the contents squeezed into me. (Not at the same time. Gah, sometimes I think my readership is ruder than me.) *Back to the present wiggly lines*

That was my first enema. And, I have to tell you, I can see why people get this done for fun. No, wait. The opposite of that. I can’t begin to reason why.

After this — and the inevitable evacuation — I was sent to another room where the doctor and three nurses explained what they would do and asked if I wanted any anesthetic.

Now, you have to understand, they don’t give you much. Just enough to make you groggy. So either way I would still be conscious, the only difference being that I wouldn’t be normal again for hours afterwards if I took them up on their offer. I said I would prefer painkillers. Perfectly reasonable, I thought. But no. It was anesthetic or nothing.

So, thinking back to my colonoscopy and how easy it was, I said no. They started. And, my dear Darwin did it hurt. It felt like… Well, it felt like a 4 foot camera being shoved up my bum.

Followed by the camera man.

Then the sound man.

Then that big furry mic thing they have on the long pole.

It was then it hit me: The reason my colonoscopy was a breeze was because I was off my tits on drugs. Remember kids, always say yes to drugs when someone is buggering you with a camera. So this time — which is only 2 and a bit weeks away — I will be taking the drugs.

Oh, and if you wanted to know why they have three nurses on hand: two are to hold you down and the other is to patronise you by just telling you to breathe.

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Since finding out that I have Primary Sclerosing Cholangitis on Friday 6 November I have been utilising all of my Google-fu skills to find out as much as I can. Better to know than not – or at least that is what I thought.

My surfing has thrown up the following possible symptoms as a sign that my PSC is getting worse:

  • pain in the upper-right quadrant
  • itching
  • yellowing of eyes and skin.

Unfortunately, this now means that any twinge that I feel in my upper-right area is instantly a sign that I am getting worse.

Any itch that I feel is a sign that my time is ticking away.

And every mirror contains the possibility of the dreaded yellow tint that indicates my liver is about to explode.

I have to keep reminding myself that on average, these symptoms are about 10 years away.

At what point will a twinge just be a twinge and an itch just an itch again? And then, when they are, how will I know when they are not?

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