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.

My whole time here has been like this. I don't have a deathwish, and it's not like I want to spend the rest of my life in this bed, or in these four walls, or even in this city. I've put the work in with my physiotherapist, but once he saw I'd memorized the exercise routine he'd given me he abandoned me. I followed the advice the dietician gave me for months (the advice applicable to my situation; advice such as "Weigh out up to 300g of pasta before you cook it" is pretty useless to me. I've been hoisted every time the staff have bothered to try (once the hoist in my room was replaced, repaired twice, and charged up; for weeks I was told it was broken when it was merely unplugged!)

This is all especially frustrating because the home touts itself as offering bariatric care. I've been here 13 months, and haven't been weighed in all that time. If you've been on a successful diet then no doubt you have at some point weighed yourself and been motivated by the results. You've probably also been surprised how a small slip can cause you to pack on a couple of pounds, and recommitted to being disciplined. Imagine lying in bed for a year fighting infections on and off, obese but also bloated from excess lymph, and hoping, wanting, trying to lose weight, but with no weight recorded, no mirror, no measurements taken. For all I know I've done a good job. I certainly feel like I've made the effort... For the most part.

I will admit, for over the course of about six weeks between July and August I had about ten takeaway meals and was drinking a 2 litre bottle of Pepsi or Dr Pepper roughly every three days. I'll be honest, it was around the time of my birthday, I was depressed, and power crazy with the opportunity to eat anything I could get delivered after onky eating bland care home meals for nine straight months. Most days I was eating sandwiches for three meals a day, not wanting to eat a full hot meal in bed at midday at the height of summer. Main meals are only served at lunchtime, there are very limited options for lunch or dinner: a choice of two hot dishes or sandwiches, the evening hot dish literally being something like a burger, hot dog, or bacon roll.

As I started rejecting the home meals, my social worker got involved. She saw that the food here is, in her words, "low-quality rubbish" and unsuitable for someone trying to lose weight. She got the home to agree to get food for me that was separate to what the other residents eat. She then came back a week later with the healthy eating specialist from the local doctor's surgery, and asked her to create a diet plan based on what's healthy and what I enjoy eating. We discussed it for an hour, and the healthy eating woman said she'd write up her notes and form a proper plan. My social worker went on holiday for a fortnight, so I didn't speak to her for a month. She asked how the diet was going, and I told her it hadn't been started. The healthy eating specialist said she was still tweaking it (this was on a video conference). I was sent this on October 15th, almost exactly a year after moving in:

Transcribed from the back of a fag packet.

What a joke! I'll eat beans, yoghurt, and cooked fruit. When she says I dislike "vegetarian options" she means she asked if I like vegetarian sausages or burgers, and I said I'd rather have actual vegetables rather than ones that had been processed and moulded into an arbitrary shape. What's basically happened over the last six weeks is I have a bagel with avocado and poached eggs for breakfast, baked potato with cottage cheese most lunchtimes, and a cheese and onion omelette most evenings. Maybe twice a week at lunch and dinner I have what the rest of the home has.

The mental health team were called in to evaluate whether I have what they call capacity; the ability to understand the consequences of my actions and realise when I'm making a bad decision. Someone with an eating disorder wouldn't have this cognition, and the state would be able to intervene and take away some of their freedoms. My various health experts and social workers couldn't understand why I'd stopped sticking to the food the home offered, and why I wasn't demanding more help with repositioning and personal care.

I explained to the mental health people that it was simple: this place sucks, and I'd just stopped caring. The staff are almost always short tempered and borderline resentful of you for needing help; not because they're cruel, but because they're underpaid (£8.91 an hour) and stretched too thin. They haven't being trained in repositioning me using the fancy new pillow I've got (paid for by the council after the home refused) and used this as an excuse not to do it for ages, now it's the blind leading the blind. They don't do a good job washing me and the water is always tepid at best. I understood that not repositioning with the pillow could lead to my skin breaking down, but it's been fine without it for the eighteen months since I went into hospital, and I'd rather risk that than risk pissing off the people I rely on to feed me and help me piss without soaking my sheets.

Similarly, I realise that eating fast food and drinking Pepsi are unhealthy diet choices, but after months of a sandwich-centric diet, I couldn't give a shit. I was receiving an hour of hands on physio five times a week in my flat, but agreed to come here because it was supposed to have specialist bariatric equipment, all the physio I could want, and people my own age. It was a total fabrication, sold to me by the NHS Home First team because it was costing them £100 per person in PPE every time they entered the flat, and my package of care called for one person at lunch, and four at breakfast and dinner. Shoving me into a care home for £2,000 a week was obviously a bargain.

So yeah, I think I've been justified in feeling like I've spent a year in stasis. The truth is actually worse than that, I've spent a year in serious decline.

The good news is that by convincing my social workers that I'm prepared to die in this room rather than carrying on living like this, and that if somebody doesn't do something, likely will, a new opportunity has arisen. The mental health team were right back in March, if I wanted help I'd have to take steps to change my situation. They just didn't realise it would be taking steps towards self-destruction; I'd have to make my future the state's concern as well as my own.

Well, my nihilism worked to my benefit; two weeks ago a specialist care home five hours away expressed an interest in rehabilitating me. I met the manager and the head of bariatric care at the end of last week. The manager said that it was five minutes past midnight for me and that I'd clearly been stripped of my dignity, and that they wanted to correct what was wrong with me before things got irreversibly bad. The bariatric specialist said the bed I was in was, and I'm quoting him here, "firewood," and that if I go there I'll lose twenty to thirty kilos in the first two or three weeks, just from lying on a bed that works my lymphatic system. Based on my last weigh in, taken over a year ago, that should put me comfortably under 200kg. I'll be relatively light compared to most of their clients, and I could be out and in the community in four or five months!

Today there was a video conference with me, some of the specialists and social workers, and the manager of the good home, and it was confirmed I'd be moving there on the 13th of December, just twenty days away! I'm feeling optimistic about my future for the first time since COVID hit. It took 14 months longer than expected, but soon I'll be at the home that was promised to me. There's a woman roughly age who was in bed for seven months and is now standing, and she's looking forward to meeting me, and I genuinely connected with the two guys I met. I feel as much a part of the new home as I do part of this one.

I spoke to the head carer here, who was listening in on the discussion, immediately after. We've always got on okay despite all my complaints about the home and the safeguarding issues I've raised. She got me a drink, and I asked if she was listening in. She said she had, and seemed very frosty. "Exciting, isn't it?" I prodded.

"Good news for you," she said, rather curtly, and left. I'm guessing they're going to miss the easy £100,000 a year they were getting from the neighbouring county council. The average resident here pays £500 - £600 a week, so I'm sure it's going to sting. Also, I wouldn't be surprised if there are some frank discussions about how my health deteriorated so quickly whilst under their supposed care. If nothing else, there's no real reason for me not to absolutely slate them all over the internet!

20 Days! Peace! ✌