🎶 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.

I've even been able to drop some long term sexual baggage that's weighed me down for decades. There's no way I could snuggle up to you on a sofa like this and be 100% honest even a year ago. The ability to admit that I would like some kind of human interaction, the idea that I am on some level a sexual being with sexual desires; albeit a broken one, and the concept that there's some part of me a partner might find desirable - these are a!l new things to me! So I guess my evolution was the result of my sacrifice and the new perspective was the boon.

Heavy question to wake up to! But know that, and I know this is also the cheeseball answer though I mean it in all sincerity, you are a definite perk to my condition. I very much doubt we'd have ever met if I was still living in my damp, dark flat in my hometown, working forty hours a week as a dry cleaner and viewing my boss and colleagues as a substitute for family and friends. So you're not the boon itself, which I think would have been the slick rom-com answer, but you are definitely a very positive by-product. I don't know if I'm expressing myself as well as I could here, but I hope you take some happiness from that!

The same goes for you, my Mal-Pals! I don't think I'd have been able to write as frankly and introspectively and, let's be honest, self-indulgently had I started this blog a year ago. I don't write this hoping to gain followers, and I think the erratic nature of the content reflects that, but it's nice to feel heard nevertheless! So I thought I'd take the opportunity to let you know how grateful I am for your interest in my ramblings, rants, and "tangled musings!" Thank you.

I saw an occupational therapist today, the second time I've seen one since being here! She's left some fancy cushions to help me position better in bed. This evening has been the closest I've come to sitting out in a chair since COVID hit. This is extremely good news! I sent an e-mail to the OT last Friday; concerned that the staff here haven't been following her instructions, and that I doubt they'll have the time to help with bed exercises and manual handling going forward. She reviewed my care plan and it seems that I, with assistance from the council, have been paying for four carers to look after me and have only been getting one or wo! This place really doesn't run as advertised, and I'm starting to lose my patience!

Tonight I had an extremely mild case of supraventricular tachycardia, a condition I'm going to start referring to as Hamster Heart, as it means my heart can decide to beat at 275bpm!

I woke up at 2.30am and recognised the symptoms. This is my 7th or 8th time having it, I know what I'm talking about! I had a weird feeling in my throat and got light headed. I rang the bell and told the girl I needed the nurse. Another girl came and I told her to ring the emergency bell. She didn't, telling me the first girl was already getting the nurse. The first girl came back. I told her to ring the alarm, she told me she wouldn't because the nurse was on her way. I told them to being my empty syringe from the bathroom. They couldn't find it at first, but did bring it once the nurse came.

I had tilted the bed and breathed in the manner I've been instructed to when a hamster heart episode strikes, and it passed. The girls didn't understand what I was doing and kept telling me to calm down. This was frustrating, I wasn't in a state of shock, but I was trying to convey how potentially serious the condition is. I've needed treatment in hospital for it, and once was ten minutes from being defibrillated for it. I had literally signed paperwork acknowledging I might die. I need to be taken seriously when this happens!

The nurse took my pulse and told me I was fine. I asked for an oximeter and one of the girls went and got one. My pulse was fine and my oxygen saturation level was 99, very high for me! My usual range is 86 to 92. In hospital a couple of weeks ago it was hovering at 83 and 84, despite me being on oxygen! Obviously high saturation is good news, but it does imply I wasn't imagining the attack! I had a similar episode in hospital the first time I sat in a wheelchair for fifteen minutes. My internal organs aren't used to me sitting upright!

I'm going to e-mail my contact from the council and let him know what's going on. I haven't ever spoken to my current social worker, though I've been assigned to her since before Christmas. Now I have a case that these people are failing their duty of care. Earlier in the day I asked Sue the nurse if she should be monitoring my blood pressure, since it had been recorded as low in the hospital and hasn't been checked since. She told me that it was fine in the hospital. I reiterated that no, it wasn't, and that actually they'd taken me off my diuretic as it was so low, and that can affect it. I'm sure it was just because they hadn't given me any fluids. Sue literally rolled her eyes at me and said she'd ask the GP to come and measure it as the home doesn't have their own cuff. This blew my mind; Amazon has a wide range in the £15 to £25 price range. This place is fucking clown shoes!

Well, I think enough is enough. Time to cut through some red tape!

Peace!

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