GAMBLING WITH MY HEALTH... AND HITTING THE JACKPOT!

 I wrote yesterday that in the downtime since my last post in August "I've basically been doing worse, physically and mentally." The word "basically" really does soften the blow there, doesn't it? Jesus Christ, what an understatement!

Since I last checked in to tell you about my health I've suffered three episodes of Hamster Heart (SVT), mini pulmonary embolisms, right side heart failure, sub-COPS level SAT readings, and weeping leg ulcers. I only found out about this today, other than the bouts of Hamster Heart, which are pretty hard to miss, the home had documented that they'd recognised the symptoms but not told me! Not that I could have done anything about it. Apparently I also go cyanose when I roll on to my side. I've graduated from a CPAP to a BIPAP (if you're reading this Vanessa, you called it!) and am also on 2 litres of oxygen for 16 hours a day.

To borrow another famous understatement: I told you I was ill.

Bested only by Leslie Nielsen's "Let 'er rip.

 A few weeks ago I was visited by the mental health team. As I wrote back in March, I had a meeting with them in February and they came up with a bunch of ideas of how to help me in the room, but then sent me a letter saying: "As your current issues with your mental health are based very much on your situation, we are unable to provide any support until you have made steps towards changing your situation. We feel that at this time your needs are most appropriately met by weight management services and we would encourage you to work with them towards discharge from [your care home] and getting back into your own property. At this point if you are still struggling with your mental health, you can be re-referred back into mental health services."

As I wrote in March, this was a soul-crushing denial of help, a cruel Catch-22. It was like a lifeguard refusing to help a drowning man until he demonstrated strong swimming skills. One of the women I saw in February came back again last month, and told me in the room that I seemed a lot more depressed. She wasn't wrong.

Not only had the mental health team passed the buck, but weight management services have not met me either. Every specialist or GP I've met here has come to the home unannounced; they know I'm not going anywhere and that they will need to liaise with staff before meeting me anyway, so I'm always the last to know. Well, round about September my social worker told me that they'd written letters to me but I'd never got back to them. I explained I'd never received them and gave her permission to give them my e-mail so they could get in touch directly. A month later she asked why I hadn't written them back, and I told her I hadn't had any e-mails either, (not even in my spam!). I asked her to tell them to CC her so I would definitely get them, and that was the last I heard of it.

BETTER THAN CUMMING

Good morrow, my poor neglected Malpals, you're all looking fine! Please forgive me for my absence! I haven't been doing great the last few weeks. But I write to you today in a state of happiness far greater than any post-orgasmic afterglow!

It seems I was taken off my antibiotics too early, as my mastitis never went away, and has now flared up again. I'm seeing a physiotherapist twice a week, though he is not nearly as hands on as the one I had coming five times a week whilst I was living on my own. I agreed to move here because my carers at the time told me this was a dedicated rehabilitation facility, and that I could be receiving physio all day, every day if I wanted it! Eight months without help later and I have a lot less strength and movement. Never mind, at least I'm on the road to success again!

I've also had two episodes of hamster heart since I last checked in! Regular readers will know that's my jokey name for supraventricular tachycardia, a condition that causes my heart to beat at around 265bpm. You'd think it would be awesome, like when Fry drinks 300 cups of coffee in Futurama and time seems to slow down for him, or when Neo dodges bullets in The Matrix. What actually happens is your blood moves through your lungs too quickly to take on oxygen, and you die if the issue doesn't resolve itself. Fortunately both times I was able to sort it through tilting my bed (I'm bedridden and living in a care home, if this is your first time reading this!) but on multiple occasions it's needed treatment in hospital, with pretty serious drugs. It can (and nearly did!) require defibrilation. Well, of the two times I had it only once did my so-called "carers" ring the emergency bell for the nurse, though I asked for it both times.

The first time it happened I told the carer, in front of the nurse, that it's a serious condition and I need her to ring the emergency bell if I ask her to. I expected the nurse to have my back. Instead the carer told me that she has to use her own judgement before ringing the bell, and would only ever ring it if a patient was out cold. I told this to another nurse and she said I should have reported the carer; I said another nurse had witnessed the whole thing and hadn't said anything. The head carer submitted a report to the manager for me before, and nothing was ever said about it. Why waste my time? Surely telling two nurses is reporting it? My patience with this place has basically eroded at this point.

The second time the carer did ring the emergency bell, after I insisted, and the nurse left me unattended for five minutes whilst he went to look for an oximeter. A room in this place starts at over £400 a week, shooting up to near £600 depending on the level of care you need. They should really go fuck themselves.

All of which is to say, I haven't been feeling awesome, nothing much good has happened, and so I haven't felt like blogging. Well, that all changed today, because PIZZA!!!

I haven't bought pizza since moving in, but I have bought this awesome hat!

WHO HAS NINE TOENAILS AND TWO THUMBS?

This guy! 👍👍

I've been having an ingrown toenail treated every week since November. One of the few advantages of being here rather than the flat is that a podiatrist visits once a week. This is great - pre-COVID I was paying for a chiropodist to come cut my toenails every so often, but COVID put a stop to that! When I first moved in my nails hadn't been cut in about a year. The toenail on the big toe of my right foot has been ingrown at least since then. My toenail on my left foot basically fell off in hospital in early 2019, when I was still just about moving around.

Warning: These are not my feet! They are Mistress T's. Photos of my disgusting feet ahead!

I knew the podiatrists were planning on removing it rather than visiting me every week to look at it and dress it. I didn't know it would be today! I wasn't too worried, though I had to sign paperwork acknowledging I could go into anaphylactic shock and die. Mainly the worst part was spending twenty minutes listening to the two guys talking about their golf handicaps whilst waiting for the local anaesthetic to kick in!

I haven't mentioned the toenail before because it honestly never occurred to me, so low down is it on my list of concerns. In fact, since coming from hospital three weeks ago, I've had a doctor talk with me about:

• Blood in my urine.
• A weird skin thing on my back that keeps bleeding; I've been told the NHS views it as cosmetic and won't treat it as it's not in a place that'll stop me getting work. It'll cost £560 to get it removed. I don't care about it and wouldn't have known about it if I wasn't told about it.
• Low blood pressure, diagnosed at the hospital but not chased up because this shitty, shitty care home doesn't have a blood pressure monitor. They're £20.
• A weird skin thing on my chest that feels like a blister with a ball bearing inside. A nurse here swabbed the discharge and sent it off, but I haven't heard back  yet.
• Serious fatigue. I slept all day and night Thursday, Saturday and Sunday. I fell asleep a few times today. I'm tired right now. I don't know why!

It's the tiredness that's bugging me the most. My CPAP machine for my sleep apnoea was like unlocking a cheat code that allowed me to sleep for half the time, wake up feeling refreshed, and stay alert all day. The difference was incredible! Now that I've had my beard shaved and my hair cut it's working better than ever; I should be full of beans! But I guess I'm still fighting my infections.

I'm aware that I've been letting this blog slide. I had a pretty good streak going of keeping it updated at least every other day. I updated it from hospital. It's easier to record positive events, and I worry about crossing the line from being sardonic and self deprecating and making light of my misfortunes, to just straight up complaining and whinging and generally being a bummer. Most of all I want to write something really sexy, or at least sexual; something very unwholesome. It's hard to write sexy when you feel gross.

Last Monday my mother took a photo of my legs and e-mailed them to me! I didn't want to see them, she just did it without asking. I tend to keep my mind busy with other things. Well, I had to look at them, and now you do to!

Worse photos ahead!

The box on my bed is a present for my mum, more on that on Thursday. My right leg looks mostly normal, just a little red! The skin on the left has been awful for about eight years; since the first time I got cellulitis and developed golf-ball sized blisters! The swelling really isn't as bad as it has been, and is mostly at the back of the leg. I'll be up on these gams in no time, all being well! I'm glad she did take the photos, because it inspired me to take a look at some older ones, and I was amazed at the difference. More on that laater!

The tubigrip gathered ineffectually around the centre of my right foot is supposed to keep the dressing on my right toe in place. God knows how many carers would have seen it like that and ignored it! I really try to give this place a fair shake, and refrain from cynical hostility. I don't think anyone on the staff here is bad, but there's a lot of people who are jaded and they're all overworked. The woman who's been in the room next to me for the past couple of weeks won't ring the call bell; she'll just shout for help over and over again. Sometimes the staff shout at her. I get it; it must be difficult helping some our biddy get dressed or help some old duffer to the toilet whilst this woman's screaming for you. I admire her lung power! Obviously the concern is if she does fall nobody will come running.

I sent my housing officer an email a couple of weeks ago outlining four major concerns I've had since getting back from hospital. I mentioned that I've been paying for four carers but only ever had one or two, that my hamster heart (SVT) episodes weren't treated as emergencies, that the home doesn't have equipment as basic as a blood pressure cuff, and that I'm having to pay for Wi-Fi because the home manager hasn't got the passwords to the networks they provide. He agreed these were serious issues and that he would pass the complaints on to the council. So that's good news too.

I decided to post an old photo my mum took of my legs for comparison. This photo was taken in 2017. I was working six days a week on these getaway sticks! The lymphoedema nurse didn't understand how I was staying upright on them all day! There were no chairs in my dry cleaners; I would walk about five blocks and down a flight of steps to a bench to have lunch. They would balloon up even more (as would my abdomen and penis!) the Christmas of the following year.

You are under no obligation to read any further! The next photos are included only for the morbidly curious and for comparison against my current, relatively healthy legs. Thanks for making it this far, there is no shame in stopping here!

🎶 OWNER OF A HAMSTER HEART 🎶

Much better than the owner of a lonely heart...

Hi guys! Sorry about the unprecedented amount of time between posts. The Wi-Fi has been prohibitively slow since getting back from hospital. I've actually bought my own mobile broadband router and am waiting for a SIM card to arrive. If you're thinking of buying mobile broadband from an internet service provider, this seems a lot more affordable than essentially renting a hub or a dongle from your ISP, and you can pay as you go rather than locking into a contract. The only catch is that I don't get great signal on my regular phone hear, but it looks like the new provider should have me covered. I'm expecting the SIM tomorrow, so look forward to more regular updates!

I've been waiting to share an excerpt from the exchange I have going with my friend and online playmate Babycakes. We met through r/DirtyPenPals and she is a constant delight! The question was:

Imagine you were offered a deal, some time in your past, with no memory of having made it. A sacrifice for a boon. The sacrifice was your physical health and mobility, all the problems you know all too well.

What was the boon worth that sacrifice?

Heavy stuff! I answered as quickly and honestly as I could, and I want to share my answer here because it concerns you guys, the readers of my little blog! Here's what I came up with:

The knowledge that I could still be relatively happy and keep my sense of humour despite it all. As a kid I was terrified of anything going wrong medically. When I was a child I used to scurry out the room when the theme tune to Casualty started! I fainted after being given injections at school. I got so used to being pricked in hospital that I would basically sleep through it! I even jabbed myself in the stomach at home twice a day for a fortnight. The idea of being homeless terrified me so much I tried to kill myself rather than deal with it. Now it's just a technicality, I never had to rough it on the streets.

I know I complain a lot on my blog, but I like to think I mostly do it in a sardonic fashion. If you took everyone in the privileged first world and measured how well they responded to waking up bedbound with ants crawling on them I think I would handle it way better than most; like, in the top ten percent of reactions. Maybe a little too zen, now that I'm seeing an occupational therapist I'm going to have to insist the home help me out a bit more.

TWO SURPRISES, AND I DABBLE IN CYBERCRIME!

Hello Mal-Pals! I'm glad to report I'm doing a lot better than I have been recently. I'm still not feeling 100%, but I'm a damn sight better than I was when I was hospitalised. My hearing is back to normal in my right ear, which is excellent! My main bugbear is the Wi-Fi here, there are three networks and I only have access to one of them. My laptop simply isn't connecting to it, whilst my tablet finds it for a while and then loses it. It's very frustrating, the internet is basically the one place I'm truly free. I have no real privacy and can't set my own agenda. I have to ask for help with everything. There's a family Zoom call later, it'd be nice to be on it!

I spoke to the owner/manager of the home - I had my parents e-mail and ask for help, because I've consistently tried to see her about more pressing matters and have been ignored before. It turns out that of the three networks, she has no information about one of them, has a password that doesn't work for the second, and uses the one I can get on with my tablet herself. There's just no attempt at problem solving or improving things for the guests here, the staff seem so jaded and have way too much responsibility. The care home is divided into two floors and there are over sixty beds; I don't know how many are on each floor. I do know that on Monday overnight there was only one carer and one nurse looking out for the entire floor, from 8.30pm to 7.30am. This has happened a few times before, and seems to me to be pretty irresponsible. Granted, most of the residents will be sleeping, but it still seems dangerous; a nasty stomach bug or a fire would prove disastrous!

I have been playing on Reddit again with the usual suspects. I've genuinely missed carrying on my imaginary adventures and flirtations, but it seemed more polite to not play at all whilst I was feeling down than to knock out a couple of responses in between naps! My playmates know not to expect a swift response anyway, and I like trading a couple of dozen messages over the course of a day rather than fitting it all into a dedicated hour of chat.

I also set a prompt based on my new obsession, The Leprechaun's Game. I said I wanted to be the leprechaun, and that I was looking for someone to play Misha, trying to convince me to spare her husband after he stole my gold, and not to hurt her or her unborn baby. I had a response in less than an hour, because r/DirtyPenPals is mental and there are a ton of very specific and implausible situations posted every day. We chatted back and forth for a couple of hours in character; it was not particularly sexy! I did toy with the idea of staying true to the character and just demanding my gold and then killing her off, but decided against it. I might revisit the chat and decide on whether or not to post it. Maybe I'll ask the girl I played with first. Watch this space!

I was surprised by a visit from the physiotherapist, and she brought an occupational therapist along with her! I saw the physio for the first time back in February, and she told me she'd be back with the OT in the next couple of weeks. This is the first time seeing her since. For some reason the home manager had e-mailed my parents after they saw her in the corridors and asked her what progress was being made on my last visit, and my mum had told me. Nobody from the home had told me, and I'm still in isolation after my hospital visit, so I wasn't sure they'd be here. It's great that they were! Finally some progress!

HOME AGAIN, HOME AGAIN, JIGGETY-JIG! PLUS: ONLINE SHENANIGANS!

So I've been sent home again! How do I feel about that? Well, I've just bought, pretty much on a whim, the embodiment of sadness, paying €20 to have her shipped from France. That may give you some idea!

They only made these for Sadness and Rage! I guess they've done their market research. 

She's not a toy, she's a "soft sculpture." I am not a CHILD, thank you very much!

The hospital was kind of a waste of time. I spent a lot of time in the hospital between December 2018 and March 2020, when COVID hit. I've been in twice since. Beforehand I was occasionally kept in for little reasons. I spent a few extra days one visit because my temperature would flare up at night. I had no other symptoms and it would be normal during the day, but that one spike would keep me in for 24 hours extra. A few times I've spent an extra night because the ambulance crew were too busy to take me home! Sometimes I've been discharged by a doctor during Monday rounds - if there was a doctor working Saturday or Sunday I could have gone home then. And of course, I was well enough to go home for a couple of months in early 2019, I just didn't have a home to go to! A place in a care home opened up, and then after seven weeks (six in care, one back in hospital!) I moved into a "temporary" flat, and I've been living there since! All my staff's there now, though I spend my days in a care home in a different county.

Things are very different since COVID. There's no waiting in hospital on a stretcher until a bed's ready, instead they wait in the ambulance until the bed is available in the right place, and wheel you right there. No waiting in limbo for the right ward to admit you, and they'll send you out as soon as you can bear it! It's a very different experience.

On my last visit I had a room to myself in what used to be the room they used to knock kids out before surgery. It was now partly used for storage,, but you could see old paintings that I guess we're meant to relax the young'uns. I had suffered an SVT attack but was now fine, so they just stuck me in whatever ward had a spare isolated room overnight whilst they waited for transport. It was not the best night's sleep, but I left the next morning.

This time around I was transferred from Majors, which is where they assess you first, to another ward at twenty minutes to one in the night! They don't serve food or drink in the Majors, except with medicine, and by the time they moved me I was sleeping anyway, though eager for a drink!

A CHANGE OF SCENERY

I've just had a doctor pop over and see me, and I'm off to the hospital! He barely looked at me before deciding I needed to go and get some intravenous antibiotics and my ear wicked; the only thing that's unclear is which department I'll be admitted to first, the ear, nose & throat doctors or whoever deals with mastitis! I hate that I have to go but am glad to be getting help. It almost feels like a sick punchline; "I told you I was ill!" I have no idea how long I'll be there for.

I'm focusing on the positives; maybe I'll be able to get food delivered, my bed will probably be better, the Wi-Fi will probably be a lot smoother and I can download a bunch of games onto my laptop ready for when I come out!

I've had both my COVID shots, so I'm not as worried about that as I was when I went for an overnight stay in December. The hospital is pretty near to the care home, so hopefully it'll be a smooth trip there and back.

So yeah, swings and roundabouts! Hopefully I'll be feeling myself soon and this blog will get back to... well, as normal as it gets!

Peace!

✌   🌈💰🍀

HAIRCUT 💯, BUT NO FANTASTIC DAY

 Hello Malcontents! Another checking in article, I'm afraid!

Still sleeping a lot, still suffering from mastisis. I really don't mean to moan every time I come on here, I wish I had more good news, even something as daft as my new, unending love for The Leprechaun's Game! But over the weekend I've developed an ear infection, and that is occupying a lot of my mental bandwidth! I can hear the blood pulsing in my ear, and it's always full of fluid. Not great!

Unfortunately this happened when the worst nurse, Sue, is on shift. She's lazy to the point where it's borderline negligent. When it's not her shift I get all my morning tablets at around 7am. When she's working I get them at around 10am. I was taken to hospital in December with a case of supra ventricular tachycardia. The paramedics were complaining about her in the ambulance, one of them called her "obstructive!" One of them asked her for my medical notes and she told them "in a minute!" My heart was beating at around 265bpm, I needed drugs injected to get it beating normally. It's best not to keep the paramedics waiting!

I had another incident of SVT earlier in the year. The carers I reported it to went to find her on foot rather than ringing the emergency bell. It was twenty minutes after reporting it that she came to see me, at which point I had reset my pulse by raising my legs and controlling my breath; fortunately it was a mild attack. The worst attack I had didn't reset after being given the drugs and I was being prepared to have my heart reset electronically. I had to sign the paperwork acknowledging this could kill me, and the anesthetist came to measure my throat for a breathing tube. Fortunately my body reset itself just in time and I was able to shake the anesthetist's hand and that was all. So when it does hit I need it taken seriously, and when Sue did turn up and didn't even have an oximeter; I had to wait for her to finish her drug round and come back with one. It was genuinely terrible care. The head carer reported the carers I told for failing to uphold their duty of care when they didn't ring the emergency bell, but nothing ever came of it.

So yeah, Sue's not the one you want in your corner when things start breaking bad. Yesterday she took ten minutes out of my parents visitation time to explain that there was no progress getting hold of a physiotherapist. She said they were busy seeing other people, and I explained that I realised that, and that I have been waiting over eight months. She said that the physiotherapists wanted to see me losing weight, and I pointed out that I'd made some serious changes to my diet since arriving here but above nobody has weighed me since my arrival in October I don't know how much progress I've made. She said the GO said there were exercises I could do in bed, and I told her I've been moving my legs as much as possible, but it's different from having somebody help lift them, or putting their arm there to push against, or putting a slide sheet under the legs and monitoring the movement. I literally said that she was a nurse and I didn't understand why I had to explain this to her. In the end my parents just thanked her and sent her off and then told me how frustrating they found her behind her back. Anything to avoid a scene!

SINCERE APOLOGIES

Hi gang,

Just a brief post to let you know that I have cellulitis, and possibly mastitis, which is unpleasant and also a little embarassing, as mastitis usually happens to breastfeeding women. As we all remember from med school, "You can't spell 'mastitis' without 'tit.'" Fortunately it hasn't affected my nipple, it's more affecting the skin towards my armpit. I've had cellulitis before, but only affecting my feet, legs, abdomen and, on one memorable Christmas, my penis.

I saw the doctor today and he's hoping antibiotics will be enough to treat it, though apparently there's a black scab there and if that goes bad I'll have to go to hospital and have whatever's there sucked out of me. Here's to hoping that doesn't happen!

It doesn't really hurt but I keep getting really hot and I've been really tired for days now. I haven't been on Reddit for over a week, I think, and have been sleeping an inordinate amount. It's my favourite thing to do right now! I chalked it up to depression, and that's probably part of it too, but I'm glad there's an actual physical issue I can point at for feeling so tired all the time rather than just being all "I'm sad, leave me alone so I can shut my eyes and disengage from the world."

One of you beautiful Functionistas recently commented that I'm too hard on myself, and maybe you're right, if I read that someone else was tired all the time I wouldn't judge them for it, and if they told me they were depressed then I would be understanding. It feels like there's a part of me that's always ready to kick me when I fall, to dwell on my failures and inadequacies and make me feel worse about myself, to remind me that I'll always be the kid that would be picked last, or not told there was a game on to begin with. I imagine most people have that voice, but it must be louder for some than others. I guess that's what depression is.

Wow, this ended up being a lot bleaker than I intended! Just letting you know that it may not be quick, but when I'm feeling better I'll be back into The Leprechaun's Game! My friend Julie recently complimented my writing and suggested that I might have a future writing professionally! I was hugely flattered, and whilst I can't see myself making a living that way I was encouraged to reach out to ChampDog Films to see if they would let me write the novelization of The Leprechaun's Game. I do have another idea for a writing gig if they reject me, but I'm holding out hope!

Peace!

 ✌   🌈💰🍀