Tuesday, March 2, 2021

MY LIFE AS A LIMP-DICK: A MEDICAL HISTORY

Fair warning: in this post I'll be going over my medical history and explaining exactly how I wound up bed bound at the age of 33. I'm not looking to bum anyone out, or illicit sympathy and I haven't undergone a bunch of surgeries or anything too gross. I just know my on-going condition will come up a bunch in the future because it's obviously a huge aspect of my life, so it'll be handy to have something to point at that says what my deal is and that I'm not really bothered by it. If this is not your bag and you want to skip the rest of the post then that's cool, but there are bits that are funny and embarrassing and, not to brag, there was a brief time when I sported too much cock for any woman to handle, so I hope you'll find something in here to enjoy!

What if I told you I found a way to increase patient morale AND reduce the cost of nurse's uniforms by fifteen percent?!

My first real health issue was experiencing chronic back pains in my early twenties. As I wrote about earlier, I was working in a charity shop and riding the bus for four hours a day. The charity shop gig was very physically demanding - there was a shop floor on the ground level and a room upstairs to sort through donations and prepare them for the shop floor or dispose for them at the back of the shop (the back of the sort room led out to the bins, the shop was built on a steep hill). A lot of the volunteers were pensioners, so if anyone came in with a set of encyclopaedias or a suitcase full of junk they cleared out of their loft it was up to me to lug it upstairs. The bus ride was always super uncomfortable, there were never any seatbelts and the buses would snake through country lanes, hitting a bunch of villages and hamlets. I chalked my back problems up to that. I was taking between 8 and 16 ibuprofen a day and it did the trick, though my back and joints felt bad when I woke up and late at night.

I had a little holiday in Portland, Oregon over Halloween 2013, and it was easily the best week of my life. I was like a different person out there, laid back and easy going and talkative; I've never been happier since. I was back at work for a busy, stressful week, the shop having suffered a little in my absence, and then one evening on the way home I felt a little ill. I remember feeling bitterly cold, and going straight to bed once I got home, not stopping to eat, just laying under my duvet with my teeth chattering! After a while I felt a popping inside my head, like the pressure had changed, and suddenly everything seemed silent. I realised that I had been listening to the blood pulsing in my ears. The cold feeling passed immediately and I felt OK, though later that night my left leg was feeling hot and prickly, and tender to the touch. When I woke up the next morning it had swollen up a little and there were several blisters on the front of my leg (I sleep on my back) that burst as I put my trousers on. I went to the doctor and learnt I had cellulitis, an infection of the deep skin. I was given anti-biotics and was told to lie on my back with my foot in the air until it went away, which was a few days later. I remember showing my parents most of my holiday photos whilst lying on the couch with my leg under a pile of cushions!

I experienced cellulitis again a little over two years later when I was working as a dry cleaner. I had the same cold feeling and pounding in my ears that all stopped with a sudden pop. My leg seemed OK the next morning so I went to work, but I could feel it swell up and blister as the day progressed. I know I was originally given oral antibiotics because I remember walking to the local supermarket to pick them up, but I also remember the district nurses coming to visit me at home to administer intravenous antibiotics via a drip for about a week, including on Christmas Day. I was also diagnosed with lymphoedema, which basically means my body will store fluid in my legs rather than getting rid of it all through urination. I used to have compression bandages applied once or twice a week at the GPs, they're a bunch of wet bandages that tighten around your leg as they dry, squeezing any fluid out. At some point I got well enough not to need bandages and had custom compression stockings made instead. I remember watching  POV sissy instruction video, hoping I could get off on the idea of having to wear these things, but ultimately I just didn't find it embarrassing enough. I was taking all of it in my stride.

The lymphoedema stayed bad for about four years. I would see a specialist every six months or so, but my leg was always wet, and by the end of a day's work my foot would be all pruned up and my shoe would be soaking on the inside. My back ache was gradually getting worse and worse, I was still blaming it on the charity shop work. I remember three embarrassing conversations about my back and the weight I had put on during that time:

1) I was in the supermarket after work one day (I was doing all my own shopping and cooking despite living at home and paying rent) when my Mum called to say she was locked out of the house and needed me to come home. I told her I'd finish up and let her in. She later told me she was annoyed that she'd had to wait twenty minutes whilst I dawdled home. I remember thinking this was unfair because she had no idea how long I had to spend in the supermarket finishing my shopping and checking out.

2) My brother showed my Mum a video some asshole had taken making fun of the way I walked, so they had a sort of intervention to tell me about it. No-one suggested I go to a doctor about it, they just let me know what an embarrassment I was. I couldn't understand why they gave a shit about what some douchebag said about me on some video I hadn't seen and wouldn't have known about.

3) A couple of years later, when I was living alone, I wrote off the company van, driving it off the motorway and into a bunch of trees. I was lucky not to be seriously hurt. The van was facing the wrong way down the road and was laying on the passenger's door, I was held in the air by my seatbelt. I was at my heaviest at the time, I got really depressed when the dry cleaner's burnt down and I was doing all the cleaning and pressing by myself, twice a week, in a cramped showroom with no ventilation or natural light. The rest of the time there just wasn't enough work to do. I hadn't driven since passing my test 12 years earlier, and had paid about £100 for lessons to refresh myself and regain the confidence to drive by myself at night. I guess it wasn't enough! But yeah, I was fat and I wrote off the company van, and my boss asked me if the firemen would have had an easier time getting me out if I didn't weigh as much. I told her I'd started losing weight (the new year had just started) and I suggested weighing in once a week at work.

Unrelated to the back problems and the lymphoedema: I developed repetitive strain injury and my fingers started to curl up in what is known as a "spinster's claw." I had to have surgery to release my compressed ulna muscle in my arm; it was no big deal but it left me with a scar that my colleague in the dry cleaner's described as "Frankenstein-y." Ultimately my physical and mental health had gotten bad enough that my boss agreed that I couldn't do the job any more, and we left on good terms, the owners saying they'd love for me to come back if my health improved. On my very worst days it would take me less than five minutes to get to work and about half an hour to walk back, clinging to the wall like Spider-Man with vertigo!

A spinster's claw, My shadow puppets went to shit during this time.

I went into the hospital for the first time on Christmas Day, 2018. I was homeless but had a bedroom and bathroom to myself in sheltered accommodation, sharing a kitchen with some other homeless folk. I had a small fridge in my room, a small cupboard in the kitchen that could be locked, and access to a shared freezer which my food would often be stolen from. This really bummed me out; we had all experienced losing everything and had been given the opportunity to start over, and still some walking shitbag was taking what little the rest of us had. It's worth mentioning that I had broken my wrist whilst there; I fell backwards after falling asleep on my feet watching TV on my laptop, the chair provided being too uncomfortable to sit on for any period of time. I had never broken a bone before and hadn't done anything about it until the next day, when I walked to the GP saying I thought I'd sprained it. I then took a bus to the hospital to get it X-Rayed, where they discovered it was fractured about as badly as it could be, having fallen straight onto my hand and having the bones in my arm splinter as they were driven into my wrist. It didn't really hurt and they put it in a cast, but told me if I hadn't slept on it already they'd have kept me in hospital with it and probably given me an MRI. I can still bend it to a weird angle.

My parents picked me up from the shelter on the evening of the 23rd; I never invited them in to my sparse living quarters. We drove a little while to a theatre, where we had tickets for dinner and a panto put on by a local troupe of touring actors we enjoyed. I found it increasingly difficult to move, and struggled to stand after dinner, and sat by myself in the aisle at one side of the theatre for the show. When they dropped me back I called an out-of-hours doctor, who gave me painkillers and told me to see the GP in the morning. My legs were red and swollen, but not blistered. Over the next day I would also start storing fluid in my groin and abdomen, the skin on my stomach becoming taut and firm to touch. It was weird.

The surgery was usually a five minute walk away, but it took about an hour to get there, popping into the corner store for a bottle of Pepsi en route! The GP arranged for the district nurses to come and give me a daily intravenous drip, and sent me on my way. I don't know who should have insisted I needed hospitalization; me or him, but between us we dropped the ball. I left the GP and took a bus to the supermarket: an easy ten minute walk I was in no condition to make. I bought food for the next few days, knowing they'd be shut for Christmas. I could make my way around the supermarket ok using the trolley for support, though I'm sure I was a sight! I struggled to step up in to the bus home. The bus stopped about a minute's walk from the shelter, by a large open piece of land. It took me about half an hour to get there without a wall to use for support. I would kick my right show off every so often to relieve my swollen foot. At one point, a living saint stopped and asked if I needed a lift anywhere, I pointed at the shelter and explained I was headed there so there wasn't much he could do!

As soon as I got home I got a call from the District Nurses, saying they would be right there! I stayed on my feet until they got there, opened my door to let them in and then sank into my chair so they could pump antibiotics into my arm. I thanked them, and asked if the nurses visiting the next day could ring ahead again so I could be sure to get out of bed and open the door of my room of the building for them; the usual admin team you could reach on the intercom would all be at home on Christmas Day.

Well, Christmas came, and I woke not to the sound of reindeer's hooves or jingling bells but by a nurse knocking on my door. I must have been their first call. I explained it might take ten minutes to get up and dressed and over to the door. As I was getting of bed I heard another tenant at my slightly open window (for some reason, presumably a financial one, there were vertical blinds hanging down instead of curtains, totally ineffective at blocking the streetlight) telling me he'd been sent to climb in and open the door from the inside. The nurses didn't even bother with the drip, they just told me to stay in bed and wait for the paramedics. When the paramedics came a few hours later they couldn't believe I could climb out of bed and make my way out of the room and on to a guerney. I took my phone, mp3 player (never had a smart phone), keys and wallet, as well as a black pen, a red pen and two Christmas cards.

I got to the hospital, after about 15 minutes in the ambulance, and called my parents to let them know what was up. I kept myself busy waiting to be admitted listening to podcasts and creating a little puzzle on the back of the cards, when you lined the coloured letters up right it read "KEEP AN EYE OUT FOR THE POSTMAN" - I had a kind of DIY escape room being sent to their house in the new year. The nurse who was in charge of me was a little drunk, and seemed astonished when I told her I was a dry cleaner when she asked me what I did for a living. "Really?" she's asked incredulously. She was a few years older than me, a blonde lady with an Irish brogue. "Yeah," I replied before bragging (truthfully) "Actually, I'm one of the best in the country." She started at me in awe and left with a kind of reverence. Later she told me that she thought I'd said drug dealer.

My parents saw me before I was admitted on to a ward. They came just before I had to be wheeled off for a chest X-Ray, and didn't stay long after that. Looking back, I should have asked them to bring some food from home - it had been several hours waiting for the ambulance and by the time I was admitted to the ward it was after they'd served dinner. All I ate on Christmas Day that year was a pre-packaged egg sandwich. (PRO TIP: You won't get fed at a hospital unless you are admitted on to a ward before 5pm. You'll be lucky to get a glass of water. However, there is no rule against ordering in a pizza or a curry, just look up the hospital address and tell them which ward you're in. It took me a few visits to figure this and probably won't help you on Christmas Day or during a global pandemic, but generally it's sound advice.)

I was diagnosed with acute cellulitis and treatment involved a lot of antibiotics and diuretics. I needed to have a catheter installed but at some point over the past day my penis had grown to the size of a rugby ball and kind of folded over on itself. It took a doctor and a nurse to work together to find my urethra and keep it in place while they put the catheter in. It must have been a real mess down there because it took literally minutes to find it, and at one point the doctor asked if I was circumcised or not. The actual insertion was a strange sensation. It wasn't painful or even unpleasant - a numbing spray is applied beforehand. All you can feel is the tubing sliding past the same muscles you clench when you have to take a piss, like a drawn out tickle. I'm not going to start messing around with urethral sounding or whatever, but I wouldn't fear it happening again. You don't feel it in there unless the tubing is pulled on and you don't feel like you're peeing; the piss just flows out of you and into a plastic bag. You certainly can't argue with the results - I lost three stone during the first 24 hours! I never thought to ask if they could keep maybe 20% of the fluid in my cock, just enough to terrify anyone at the urinals.

The embarrassment came when they took the thing out about a month later (I think?). My mother visited roughly an hour later, and as I sat talking to her in my hospital robe I started pissing uncontrollably on to the floor. My mother hurried backwards away from my chair and I explained I was feeling no sensation there and hadn't realised I needed to go or even tell that I was going. She said goodbye and left before the nurse got there to clean up!

The shelter wouldn't take me back because they were worried about my condition worsening again, and the council said I was too vulnerable to be put on the street, so I had to wait for a spot in a care facility to free up before, even when I was fit enough to go. By the time I got out I had spent 51 days in the hospital. During that tine I picked up the following ailments:

  • C. Diff.
  • Gastroenteritis
  • Influenza
  • Deep vein thrombosis
  • C. Diff. again!
Another PRO TIP - if you're being admitted to hospital, telling them you had diarrhoea and are worried you might have C. Diff, will guarantee you a room to yourself for a couple of days until they get a negative stool sample from you.

I was also diagnosed with sleep apnoea and given a machine which drastically improved my quality of life, I would feel well rested when I slept and not feel tired during the day. I didn't realise how much I needed it until I had it - a common theme here!

I went back to hospital with cellulitis again three weeks later, this time for a week. I spent the rest of the year in and out of hospital, I did the math when I thought of writing this and realised I spent more time in hospital that year than any three members of the medical staff combined, unless one of them was unlucky enough to also have an extended stay in the hospital where they worked. At some point along the way they gave me a frame to help me walk around with my bad back, still undiagnosed during that year.

The following August I passed out whilst waiting for an IT guy to come see my broken laptop. He called about 10 minutes before coming around and found me on the floor. It was decided it was probably an embolism caused by deep vein thrombosis and I went off to the hospital again, this time to be prescribed blood thinners.

In the October of that year I woke up and after a while I realised my breathing was quicker and shallower than usual. I had a drink and gave it a while and phoned the non-emergency number when it didn't get better. A paramedic turned up pretty quick, this being early in the morning, and told me my heart was beating at 275 beats per minute, about three times quicker than it should be and about the speed of a gerbil's. I was experiencing supra ventral tachycardia, and the weird breathing was caused by blood travelling through the lungs too quickly to be properly oxygenated. I was in hospital for less than a day, I was given a couple of shots of something that set my heart right again. I've had it about half a dozen other times, mostly I've been able to reset my heart myself by blowing into a large empty syringe, a couple of times the medicine cleared it straight away, and one time the medicine didn't work and they were going to shock my heart with a paddle. I'd signed the waiver saying I understood it could kill me and the anaesthetist had come to see what size tube I needed when they put me under. Suddenly, I felt my heart right itself (a strange sensation, you feel it in your throat, like swallowing a golf ball!) so the anaesthetist shook my hand and went away again! Ten minutes later and he'd have been knocking me out.

On Christmas Eve 2019 I went into hospital with cellulitis once again, only this time it got worse overnight and I haven't been able to support myself enough to stand up since. I was moved to a smaller hospital for rehab, but went back to the big hospital when I had another case of SVT, though it had sorted itself out by the time I arrived. I stayed for a week, during which time I had the really bad case of SVT that nearly required shock treatment. A couple of funny things about that, I recognised the signs of SVT and buzzed for a health care assistant and told her to take some observations. She took them with the machine facing away from me, but I could tell it was bad by the look of abject panic on her face! Not much of a poker player, that one. A nurse later told me that they didn't get much excitement like that on their rehab ward, so it was good practice for them. I think about 5 members of staff came to see me being injected with the special drugs.

Whilst getting a PET-CT scan to make sure my heart and lungs were back to normal they noticed my spine didn't look right, and sent the images to a specialist who confirmed I had ankylosing-spondylitis, a genetic disorder that causes the bones in your spine to keep growing and fusing together. This explained my chronic back pain, trouble with bending and then walking and all sorts of other little things. The more I read about it the more obvious it was I had it. My spine has a bit of a kink to it (yes, I am literally kinky as well as figuratively!) and I have a tough time looking to my left. Still, could be worse, and I expect it to get better as I spend more time out of bed in the future.

I went back to the little hospital for more rehab and was doing okay, I got to the point where I could propel myself around in a wheelchair for a couple of hours without any real discomfort. There were plans to send me to a suitable place with decent equipment and regular physiotherapy, and then COVID-19 struck and the priority was just getting me out as quickly as possible, so I spent a few months in a too-small bed in the living room of my flat. They eventually moved me into a bigger bed so I could move my legs a little better, and then a few months after that they moved me into a care home as it was getting too expensive to keep sending carers in my flat - apparently they were spending £900 in PPE just to wash me, make me a quick meal (and I mean quick, these were NHS staff rather than carers and couldn't justify making anything more complex than a toasted sandwich or a microwave meal)!

So yeah, things are bad for me now, but I take a ton of tablets each day to keep my various maladies in check and the pain to a minimum. I'm just about to start physiotherapy again, about a year after leaving hospital. I'm sure if it wasn't for COVID-19 I'd be back on my feet at this point, and if not then at least I'd be zipping around  on an electric wheelchair.

One last story to share; my parents came to visit me on Christmas Day 2019, along with my brother Jason. They were planning on coming to visit me in my temporary flat, where I had gone a little overboard presents and a black Christmas tree with white lights, orange tinsel, and decorations from a tonne of pop culture franchises and some glittery skulls and horror-themed gingerbread men I had bought from Etsy. The whole thing was on a rotating stand - I had some money saved up and wanted to make up for the two previous Christmases, one when I was broke and one when I was homeless and hospitalised, (About the money - I had been denied Personal Incapacity Payment, a benefit for people struggling with illness, in August of 2018. They changed their mind once I'd been hospitalised and not only did I qualify, they gave me backpay up to the time I applied! It didn't stop me becoming homeless, but meant I could at least replace my terrible laptop with a high-end one and still have a savings for the first time in years!)

So I was in hospital with no presents to give. Fortunately, I had been on Twitter a couple of weeks earlier when Tom Skinner, fan favourite on BBC's The Apprentice, had made the mistake of posting his mobile phone number on Twitter. He took it down after 10 minutes as his phone began to melt with incoming calls and texts, but I was lucky enough to be on there for those 10 minutes and took the number down, just in case.

A true diamond geezer! Bosh!

The Apprentice is literally the only show all four of us watch, and I didn't tell anyone I had Tom's number. When my family came we chatted for a few minutes and I told them I needed to make a phone call. I couldn't believe it when the phone rang, or that he answered it, and I'm sure I sounded like a lunatic when I spoke to him:

"All right mate, you don't know me and I'm sorry to disturb you on Christmas Day, but I've been taken to hospital and my Mum's come to visit me, and I've got nothing to give her, so I was wondering if you'd do me a huge favour and wish her a merry Christmas for me."

I was half expecting him to hang up, and wouldn't have blamed him for telling me to fuck off so he could spend Christmas with his family, but he said "Yeah, course I will!" in a really sympathetic way, his voice getting higher as he said it, a real class act.

I passed the phone to my mum, suddenly acting like it was no big deal at all and that they hadn't just heard me beg a stranger for his time. "Tom from The Apprentice" I told her casually.

None of them could believe what was happening, he wished Mum a merry Christmas and answered some questions about how he was spending his Christmas (he was coming back from the pub with his girlfriend and they were about to start making Christmas dinner!) and a few other bits of small talk, and then she let him get on with it. "Was that really live?" she asked me. "Yeah, he was answering your questions" I pointed out. Jason said we should have filmed it, but when would you ever watch it back? I didn't want to tip my hand, and didn't really expect him to answer, so instead it lives on as a pretty great memory of what could have been a pretty terrible day. I've never told them how I pulled it off, because why spoil the magic?

So that covers how my body came to be in the state it is now. It happened gradually enough that I was getting more and more prepared for it. It's been a long time since I've been embarrassed at having a stranger see me naked or asking for help with a urine bottle. I haven't really confronted the idea that I may never walk again, I don't know what my odds are regarding that. I do know that I'll at least get to sit out for a bit soon, so I've got that going for me. My one regret is spending my life to scared and damaged to get physically close to anyone else in a real meaningful sense. I never sought physical contact when I could, and now the thought of going the rest of my life without being able to hug a woman I love is pretty depressing. I guess I'd never noticed how much I'd closed myself off to the world.

Thanks for reading exactly what's wrong with me, I hope this'll answer any questions you may have had, but if not leave a comment or e-mail me and I'll answer as best as I can! If you're reading this because you're facing a similar situation then let me say that none of it was as bad as I thought it would be, the worst thing about hospital is the lack of privacy and having to fit in with somebody else's schedule. I must have been in hospital for nearly a year, cumulatively, and I can only think of two instances where a staff member did an objectively bad job, which is much better than you could really hope for.

If you're just here for the kink then I apologise and promise my next post will be pure, filthy, fantasy!

Peace!

6 comments:

  1. So... those years look like a living nightmare. You are very "resilient".
    At the end of the reading, I thought of Jack Kerouac's way of writing. Even if what happens to him is more various.

    You said that, on the 23rd of December, your parents picked you up from your shelter to a theatre, «  where we had tickets for dinner and a panto put on by a local troupe of touring actors we enjoyed. »
    Was it a habit for you to go to the theater together and how did you choose the play?
    (which panto was it ?)
    Jacques

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    1. We're big fans of this one local theatre company that put on productions around the West Country, usually a pantomime around Christmas and a more traditional play in the Summer. We had been seeing them about twice a year for about a decade, and maybe taking in one or two other productions. Going to the theatre usually meant a long drive to an open air theatre with uncomfortable wooden benches - us country folk have to take entertainment where we can find it! This particular Christmas they were doing their take on Aladdin, but my favourite show they did was Waiting For Godot.

      Thank you for your kind words about my resilience and comparing me to Kerouac! I think it would be a lot worse if it all happened at once, but I just kept getting a little worse over time, so I just dealt with it. I read once that frogs are poikilothermic, meaning they change their temperature according to their surroundings. If you place a frog in a pan of water and turn up the heat gradually enough you will boil it to death without it realising it's in danger. I am that frog!

      Delete
    2. « I read once that frogs are poikilothermic, meaning they change their temperature according to their surroundings. If you place a frog in a pan of water and turn up the heat gradually enough you will boil it to death without it realizing it's in danger. I am that frog! »
      Oddly enough, I told a similar story last Sunday, over lunch at a female friend's house.
      I can no longer find* why I wanted to tell this story which took a scientific form (the executioner's point of view): if the temperature of the bath in which a living being is immersed is increased infinitesimally, he will end up boiling without noticing it.

      Our friend continued on the cooking advice for crabs given to her by her fishmonger: at low heat for a long time, it makes them numb and they don't feel anything, the flesh is then much easier to extract.

      *I found it since : Julie's answer about her second book on her blog on November the first « It was the boiling a frog thing, get you used to it a bit at a time! »
      Jcqs

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    3. My favourite fact about crabs is that when you catch them you can just place them in an uncovered bucket and not have to worry about them escaping; if one crab tries to climb out the others will just pull it back in. I think human beings can be very crab-like in this way!

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  2. I forgot to tell you ... your solution (its illustration) to reduce the uniform nurses budget and boost patient morale is really exciting.
    Jacques

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    1. I will definitely post my idea in a suggestion box the next time I find myself in hospital! The photo is of Penny Barber, I took it from the free gallery on one of her websites.

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