After managing to not spend the money I got back after my care eligibility appeal, I saved like crazy for around 18 months to get the £25,000 necessary, that amount being what I was quoted back in April 2024. When I got in touch with Balder, they offered me an ex-demo chair of the same model with a full warranty for £16,500; I took a second to consider this, and promptly accepted the offer.
The new chair has better positioned memory foam kneepads, a padded left arm (as I lean on it a lot), and an overall comfier position.
After nearly a month of using it, the only downside was that it wouldn’t fit in between the rear seats of my car, but simply nudging the left armrest in an inch as I get in position solves the problem.
So, I have cellulitis once again. I started to feel rough around 10pm last night, so when I was repositioned about an hour later I asked the HCAs to check my legs and, sure enough, there was a red patch on my right buttock. The nurse rang the out-of-hours doctor and I was on antibiotics five minutes later – I get cellulitis so often that I have antibiotics on standby!
It was the same scenario around six months ago, and because I got on the antibiotics so quickly, I only fell unwell for a few days instead of the usual two to three weeks.
Around 12 months ago I started regularly struggling to sleep; almost every night I would be awake until at least 3am despite being tired and comfortable. I would be lay there with my eyes closed, snuggled up, and often with relaxing music or rain noise playing, only to spend two or three hours getting nowhere near to sleep.
It started to affect, amongst other things, my mental health, and so I spoke to my GP about it, and asked about trying antidepressants again (this would be my third time). The doctor recommended mirtazapine, and mentioned that a side effect is helping people to sleep.
I took my first dose at 11pm a few nights later, and 30 minutes after that I could barely keep my eyes open! I was so drowsy that I was slurring my words, and I remember thinking to myself that, if this happened every night, then I would need time my medication carefully. As it turned out, the second night was much more controlled, and I barely felt a tenth of the effect until I settled down to sleep; when I did so, I was out within minutes.
As of now, I am still taking mirtazapine, and enjoy a good night sleep almost every night. Very occasionally, about once a month, I have problems, but otherwise it is not an issue. It is so nice to be able to doze off so readily, and to sleep through the night, and, as you can imagine, that in itself makes the medication worth it.
Having regular pain can be depressing and demoralising, but waking up in the middle of the night in pain, as I did last night, can be even moreso.
For some reason my left knee ached severely enough to wake me at 3:25am, and to keep me awake for a while after. I rang my call bell and asked the nurse for some Oramorph, and she gave me 7.5ml. I was still awake at 4.15am with the pain having mostly subsided, but not completely. I managed to drop off sometime after that, but was exhausted for most of the day.
It’s not often that I am woken up in this manner, but when I do, it gets me down plenty.
The time has come to start thinking about getting a new motorised wheelchair. My current one will be 10 years old in July and, while it still runs well, as I have looked after it, it isn’t really suitable as far as support goes. When first purchased, it was pretty good for me, but as my muscles have weakened and my body has deteriorated, it is starting to become uncomfortable sooner and sooner in the day.
I still have most of the money from my care funding refund, so the actual purchase won’t be an issue. I have a date booked for a visit from Balder’s representative and so will be discussing seating and leg support options. As a geek (and proud!), I am also looking forward to having a new gadget to play with. The Balder website states that the control unit has Bluetooth; I can’t wait to see what I can do when I get that!
(There are some photos, with appropriate warnings, at the end of this entry.)
I started using a wheelchair on and off from around the age of 17 years until, eventually, I had to use it full-time; I made the conscious decision to stop walking on my 30th birthday, in 2003, and a consequence of this was that my feet would swell slightly due to the lack of use and movement. A couple of years later I started to develop some rough skin on my right ankle and, when I noticed this, I realised that I had stopped being able to roll over easily in bed and so was sleeping on my side all through the night. At some point I started to get quite severe pain at the site of the rough skin and, on one occasion, my partner had to fetch pain medication from A&E in the middle of the night. A couple of weeks after that, the skin on my ankle broke producing a small but very sore area: it wasn’t much of an issue until one day I realised that the break seemed to be growing. My GP referred me to a specialist and he determined that the wound had been infected with a bug named pseudomonas. He prescribed me with some painkillers (tramadol), anti-inflammatories (diclofenac), and ascorbic acid, also known as vitamin C. He also arranged for a district nurse to visit every three or four days to clean and dress the wound.
I tried, as much as I could, to keep my foot elevated but, in hindsight, I could have tried much harder! Over the next few months, with the district nurses cleaning and redressing it every few days, the wound, or ulcer, grew and grew. Eventually, the specialist decided that I needed a spell in hospital and wanted to send me immediately; unfortunately, that was the 22nd of December and I, not wanting to ruin my partner’s Christmas, refused. Therefore, he gave me strict instructions to only put my foot down “when absolutely necessary” and I would be admitted Boxing Day instead. Whilst in hospital, the only time my leg wasn’t elevated was whilst I used the toilet; also, it was regularly bathed in a warm purple liquid that I seem to recall was potassium permanganate (but don’t quote me on that!). After three weeks, the pain had all subsided and the ulcer had dried up somewhat.
After being discharged, the district nurses continued to visit and dress the ulcer, and they were amazed at the change. Each time they came there was a little bit of new skin growing over what was once a gaping wound, and, eventually, they no longer needed to visit; whilst I was glad that was the case, I did miss them as they were, every single one, wonderful people.
I only saw the specialist one more time and he said, “Our work is done. Have a nice life and, in the nicest possible way, I never want to see you again!”
After nearly 12 months of taking tramadol daily, my next challenge was to wean myself off it which, if I am completely honest, was an absolute bloody nightmare. Long story short: I suffered around three days of sleepless nights, cold sweats, and mild shakes to be rid of the addiction no-one warned me about; I write about it in-depth on my old blog.
I took several dozen photos, at first for my own records, and then at the request of the district nurses. Here are just six to represent the ulcer’s progression – please note the description/warning with each one.
15 Jun 2005 – rough skin, no gore;
21 Jul 2005 – broken skin, mild gore;
10 Oct 2005 – broken skin, severe gore;
26 Dec 2005 – broken skin, severe gore;
18 Jan 2006 – broken skin, gore;
7 Apr 2006 – scarred skin, no gore.
After the previous success of my speech therapy outing to Wagamama, Louise, Olivia, and I decided to do it again.
We had another thoroughly good time, and this time I had the teriyaki chicken donburi.
It is a sad and depressing fact that the people who tend treat me with the least respect with regard to my disability are those closest to me. For example, my mother used to refer to me as her “disabled son;” she rarely called me her third or youngest son and it was upsetting because it was an unnecessary label. It took me years of complaining for her to finally stop.
The most aggravating thing, though, is having choice taking away from me; that is, people making decisions for me or doing things based on what they think my answer will be without actually asking me. Things like not inviting me out for a meal because they think it will be too late or too cold for me. Admittedly, there have been plenty of occasions when this has been the case, but it is not always so and I would very much like the opportunity to decide for myself.
A specific example that has occurred recently is a couple sending out “save the date” cards when they decided on a date for their wedding; everyone in the family received one but me, the reason being that the wedding is in a hot country and it was assumed I would not want to travel. It hurt. (I received an actual invite, but only because someone else intervened.)
The older I get, the more likely I am to speak up and make myself heard when things like this occur, but for everyone in my life that I managed to “train” away from doing this sort of thing, there seems to be a new HCA or someone else who has the same habit. But I will never give up trying.
Back in 2015 I was in hospital with pneumonia. It started as a sore throat, progressed into a chest infection, and ended up with me passing out due to not being able to breathe and then being taken to hospital in an ambulance with the blue lights flashing.
Whilst chatting to the doctor at the hospital he asked if I had used my CPAP machine prior to me passing out, to which I said that I hadn’t; he said that it would’ve helped with my breathing and may have prevented me ending up in hospital. It seems obvious when you say it out loud, but at the time I just didn’t think of it.
Since then, whenever I get the beginnings of a cough (as I have at the moment) I use my CPAP machine as much as I can; I find that it helps me breathe really well even when my nose is blocked.
I hugely resent having to use it every night to be able to sleep, but, when I am short of breath, putting it on and feeling that the first push of air is tremendously reassuring.
I am a creature of habit and I like routine. Maybe it’s a symptom or consequence of my (undiagnosed) ADHD, but I’ve been like it as long as I can remember.
Over the years I have had many “loose” routines, but in the last 15 years or so, since I’ve started having care, I have set myself routines that have important function; things like having regular physiotherapy, pressure relief for certain areas of my skin, and other things that take care of my health.
My current morning routine has been set for around 12 months and I see no immediate need to change it.
My alarm is set for 8:15am and I have breakfast pretty much as soon as I am awake. I like to have personal care as soon as I can after that, and then I am placed on my side for pressure relief as I sleep exclusively on my back; this is my favourite time of the day because: a) I am clean, b) I have a full belly, and c) I get to go back to sleep for a couple of hours!
