• Matt Owen


I've titled this using a word I'm not that keen on, which is apt as I'm not all that mad on my backstory. However, you have to make the most of what you're lumbered with, so in that spirit I'm going share a few things with you and get a few monkeys - actually they feel like bloody enormous Silverbacks, sometimes - off my back.

Twitter chums, acquaintances and those who just happen across my incoherent thoughts will notice that I can be a bit "up and down" sometimes. I feel that it might be an idea to give a little backstory by way of explaining why I can seem a bit chippy and off, and just plain pissed-off sometimes.

We all have problems, some more than others - and there are those among us who are purely shit out of luck. I am not one of those people. To be shit out of luck when it comes to your health is the very worst. I haven't been totally shit out of luck, but things haven't quite fallen my way in that regard.

So here we go.

When I was 13 I began falling over, collapsing, dropping glasses, bottles and Lord knows what. The folks went from being annoyed to being concerned. I visited the GP, and they said I had a "heart murmur". What the fuck's one of those?" I asked myself inside my little teen noggin. I was about to find out.

There followed a series of tests, including a horrible thing called an angiogram. The form is this: someone shoves a wire up your Femoral artery and injects dye into your body so they take photographs of your heart. Back then the procedure was a bit medieval, and King's College being a teaching hospital I was more worried that all and sundry were getting a butcher's at my meat & two veg. All a bit embarassing as a kid. What made it worse was the fact that I moved half an hour after it was done and FUCKING HELL THE PAIN.

Following on from being sliced, diced and plugged into things, the cardiac team came to a decision that my aortic valve was narrowed and that I needed a valvotomy. So let the blood run free and I can start to plan for the 1980 Olympics Decathlon. Or something like that. I asked the cardiologist what would happen if they left it, me not being keen on being put to sleep and having my sternum machine-tooled open. "You'll be in a wheelchair and dead within a few years". Bedside manner needed a bit of work, but I got the picture. Ok, well I think I'll go with the Black & Decker / chest cavity option.

A few weeks passed and the operation was done and dusted. There were some pretty horrible moments, but I came out the other side - all good. But I kept collapsing - and that was when I was in hospital. Intriguing, they must've thought. So they plugged me into more machines - this time a head machine which measure my brainwaves. So, a few days after the heart surgery they discovered I had epilepsy. Bonus ball, two-for-the-price-of-one, time.

If anything the epilepsy is the complete bastard. A year after the heart op I managed to get run over and broke my leg whilst bunking off school and going to the chippy. As my mates legged it over the road I just froze as a Cortina Mark II ploughed into me. I'd just had an absence seizure. An absence is a one of the symptoms you get as an epileptic - you just freeze, staring. I thought it was bad enough when you were in a conversation with someone - it a...bit...embaressing. But this was a bit more serious, it happening on a busy main road. I just simply stood there and THWACK! Anyway, dislocated shoulders, missing teeth, many, many stairs fallen down, kind of teaches you how to manage it. Sleep properly, don't have that 11th pint, don't stand 2 foot away from a blast furnace - all the sensible stuff. Don't fuck with it. Oh I have, but it comes back to bite you on the arse.

That's the thing, though - you do learn to manage things. You might not be able to do certain things most people take for granted, but there again, for instance I've never driven so I don't and never will miss it. Anyway, I like trains so winning. Can't do shift work (bummer, hey) can't get up and do things super early (due to the form of epilepsy I have), work in catering (boo-hoo). And of course, I'll never experience the pure joy of driving a combine harvester. As someone who's attempted to earn my living from writing, it kind of limits you from doing those jobs which supplement your "occasional" main income. That can be a bit of bugger. Buy hey-ho.

The heart valve issue reared it's head once again in 1994. I was going to have to have a replacement at some point. Whilst I knew it was important to keep fit but in the meantime, no-one told me having a toothache could be such a ball-ache if you have a dickie ticker. I had piss-poor toothache for about 3 months whilst I was at University, and eventually had to have it pulled. Relief. However three weeks later I began feeling a bit off-colour, chills, temperature. I went to the GP, they took a blood sample and called me 2 hours later "pack your bags and get to A&E straight away". Oh. Right.

I had 3 gallons of blood taken once admitted to hospital and it turns out I had a very rare thing called Endocarditis. In short, it's an infection of the heart lining and if not treated it can cause strokes, and God only knows what. If left untreated it'll kill you. Dead, dead - fucking dead. So that's me in hospital for three weeks as they administer anti-biotics by the tub full. The drugs worked, I was discharged but oh my Lord what a relief. I wouldn't want to go through that again.

Yes, you really wouldn't want to go through that twice. I should know because, years later it came back and kicked the living shit out of me. I was walking down the road one day, feeling ok, but then I started to feel a bit clammy. By the time I got home I was sweating heavily, I was in agony with back pain. Overnight I woke feeling fucking horrible - the bed wet with sweat. Seeing as I had a history of Endocarditis I feared the worse, so I phone the out of hours twat. I mean doctor. I told him my history, and my symptoms "Sounds like you have a virus". Oh, right. Next day I went out for a bottle of pop - just around the corner and I managed a few yards before the vision in one eye went and my breathing got irregular.

So next thing I know, I'm in hospital, but this time I really am struggling. Blood pressure lower than an England middle order batsman's batting average. Then they take blood cultures to see which anti-biotics they can use on me. Well they tried about 5-6 different weapons grade types of drug and nothing. My cardiologist - a good man and a wonderful doctor would later tell me the infection (a Staphylococcal bug - nasty bastard) was literally ripping through my valve. I'm glad he told me a year later...obviously. So the decision was made - Crawley Hospital wasn't big enough for me and my bug - to St George's, Tooting with great haste! Blue-lit all the way - French Connection style.

Normally a heart valve replacement operation in 94-97% successful. Now, in spite of the fact I was totally out of it (I was clocking 109 degree Farenheit on the thermometer) and I was drugged up to eyeballs, even I knew that the 50-50 chance given me by the surgeon I had ( a brilliant, brilliant man) was cutting it close. Afterwards, when I was recovering the surgeon told me it was in reality 30% but he gave me those odds to make me "feel more positive". Well. It worked. This time it wasn't a bad tooth that did for me, but a tiny cut on my foot. Fuck. That.

The people who really suffered throughout were my family and my close friends. They were having kittens, while I was blissfully unaware of what was going on. Every now and then my temperature would drop and in a pretty horrendous moment of clarity it would dawn on me that this was no picnic.

My parents, sister and brother-in-law went and sat in the pub after I was wheeled downed to the operating theatre. Good on them. It's what I would've wanted. Eight hours later it was done and dusted - in spite of the fact I had a massively enlarged heart, shocking infection - abscesses on the heart - the genius surgeon and his team had pulled it back from 0-5 at half-time.

I spent two months in hospital - held up by a pretty horrible DVT on the leg and a continual risk of infection. Eventually the shitbox bastard germs buggered off, my heart recovered and I got home. In the first ten days I was in the hospital I'd lost two stone - and eventually another stone dropped because I couldn't taste anything because of the panoply of drugs I'd had pushed into veins and stuck down my neck.

The staff in all the hospitals - especially St. George's were quite, quite brilliant. Physically, I was up and running once more. However what I never really questioned (what was a million miles away from my mind) is what it does to you mentally. Bad mistake.

I have to admit the next few years were exceptionally difficult. I felt very guilty as a result of putting people through the wringer - especially my long-suffering family - once more. I felt real guilt that people had to go through all that shit. And mate, the nightmares - the nightmares were shocking. Vivid night frights - I was back in the ward, back in the doctor's surgery, back in the operating theatre, back in the USSR. Well, perhaps not the last one.

I was invited back to St George's to attend a seminar and give my perspective on the hospital as a patient. Afterwards, a very eminent looking chap wearing a bow tie approached me - he told me "I remember you vividly - last year, right?" I told him yes, and he replied "As an anaesthetist I've never seen anyone as scared as you were". I wanted to say "NO SHIT BUSTER", but he's imminent, wore a bow tie and saved my life so I didn't and I had a lovely chat with the brilliant man.

Back to the mind. Things were getting...a bit out of hand. I was feeling very low, work was getting thin on the ground and I began self-harming. I was having a full-on breakdown, I guess. It had been coming but I couldn't see it, and sometimes admitting you're in trouble is the hardest thing to do. I approached my GP and he arranged for me to see someone so I could get assessed.

I saw various members of the mental health team and I was finally diagnosed as having PTSD. I think the first thing that went through my addled mind might've been "but I've never been anywhere near shell burst or gunfire" because I didn't really associate that disorder with my experiences - I never joined the dots. I felt a massive relief, as it goes. At last.

I was given a course of EMDR (Eye Movement Desensitisation & Reprocessing). It's kind of difficult to explain but it makes you relive the more vivid, disturbing moments you lived through and helps you process them. In other words - to slightly misquote Phil Daniels in Quadrophenia - it helped me deal with all the rubbish I have to go about with.

Anyway, I felt I had to share this. It might go some way towards explaining why I can seem a bit up and down on here. Most the time it's the satires, moaning about the English cricket team and taking the piss. Sometimes it's not.

As a post script to all the above, I feel I should mention the immense fuckery surrounding my claim for PIP (Personal Independent Payment). I first starting getting DLA (Disability Living Allowance) thirteen years ago. I was taken off it a couple of times and told I had to appeal against it. This I did successfully, with the aid of the CAB. The second time I appealed they came back and told me I was successful, and awarded me DLA for life. Well that's that, I thought, as I began lighting my cigars with flaming tenners in celebration of the forthcoming cashflow jizzfest.

However "life" didn't mean life, as the current government in their infinite wisdom decided to "roll out" (yeah, not down with that term, at all) their all-new benefit, PIP. So all the people on DLA (including those like me who'd been awarded it for life) had to go back to square one and apply for this shiny new benefit.

I'm not a violent man, but I'd gladly watch whoever designed the benefit claim forms, walk blindfold and barefoot across a roomful of upturned three pronged plugs. In all seriousness, it's not just the tear-your-hair out time-consuming period you spend filling the fuckers in, it's the stress you're put through remembering all the shit you went through, as an ill or disabled person. For instance, if you have mental health issues (with me it's PTSD) you're forced to bring all that shit up again...and when you appeal...again...and when you're forced to appeal again...again. In my case, the psychotherapist who helped me package away all the shitty, horrible memories of surgery, and hospital, had all their good work undone by this whole, sorry process.

Anyway, then you're asked to attend a "medical assessment", which is overseen by a "medical professional"- who could be the office First Aider as far as I'm concerned. Now, personally-speaking, I reckon taking the word of a person who knows where the bandages and Paracetamols are kept in the Jobcentre Plus office, over that of a Professor of Cardiology, a neurologist and a GP is the way to go, and not completely arse about face.

The minimum amount of points you need to score to qualify for PIP is eight. First time around, I managed four. Ok, nearly there - but not quite. So I asked for what is called a Mandatory Reconsideration. I went through this process, and I scored a big, fat zero points. Which means I'm officially cured. No ticker problem, no seizures, no PTSD. All those problems I spoke of earlier on, forget it - I'm all good - merely part of my fertile imagination. Oh, wait a moment - that's right. That's complete and utter bollocks, I'm still fucked up.

So now I'm appealing and it's going to a tribunal. I've been told that it could take up to ten months for it to happen, to add to the six months I've already racked up. Which is ok as I have a fantastic support system around me. However, there are plenty of people who'll be told this and will simply go into freefall. So if the powers that be were going to "roll out" this new benefit, they should've been prepared to roll out enough resources to deal with the number of people who've simply been booted off their benefits. In short, they've fucked up.

However, they're never going to admit this, because, well...they're politicians.

#mentalhealth #endocarditis #heartproblems #depression #EMDR #epilepsy

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