Doughnut Cushions and Purple Lights

I’m coming out of the relapse I mentioned in the last blog post. It was a very bad one, involving a hospital stay and being very ill for a couple of weeks. I’m hoping to blog about the hospital stay soon, but my brain isn’t up to it yet.

This relapse was different to the previous ones as it was the first one where I actually asked for medical help. There was a good reason for this- my pain levels were unbearable and it was making me consider death as an option (this wasn’t depression, purely an inability to cope with pain). My GP wouldn’t help, but the hospital did by giving me morphine a few times, after which I no longer needed it as the tramadol was working to keep my pain bearable again.

As is normal during a severe relapse, I had problems with various things. I was non-verbal much of the time (including the entire hospital stay), I was unable to chew, struggled with swallowing much of the time, and was completely unable to sit up so I had to use the evil bedpan. I also was unable to deal with much light or sound, and I spent a lot of time sleeping. Then there was being unable to move or communicate except by breathing loudly at times which wasn’t exactly fun, and other times spasms were really bad (though not as bad as some previous times, luckily).

It’s hard to convey just how little I was able to do in writing. I needed someone else to feed me, put my medication in my mouth or roll me over in bed, on top of my normal care needs such as needing to be washed, teeth brushed, pyjamas changed, penguins heated, things brought to me and placed in my reach, all of which I rely on other people for. On top of this I needed Johan to interpret my attempts at communication when unable to type or speak. All my normal symptoms were a lot worse than they are normally, and even though the tramadol was making the pain bearable, it still was a lot of pain to deal with. I was lucky that some of the time I was able to use my tablet (on lowest brightness with sunglasses on) some of the time so I was able to use the internet and type to communicate when I was feeling up to it.

As I couldn’t chew (it drained so much energy it meant I was unable to swallow what I’d just chewed) I ate yoghurts, smoothies, soups, and pureed food. As swallowing was difficult and exhausting, I could only manage small amounts. This meant I lost a lot of weight during that time (I’m still in the normal BMI range, but if I lose much more I’ll end up underweight and it’s been obvious to my carer). 

Due to this I was having issues with my hips getting sore lying in bed (and trying to develop pressure sores- I got a sore, red hot patch, but no breaking of the skin which I’m grateful for). We tried a few methods to take the pressure off- lying me on a pile of pillows (it helped for one night), and buying a doughnut cushion, recommended by someone on Twitter. It was hard for me to use as it made me feel rather unbalanced but it is a good idea. We also bought a double quilt for my bed, so I could lie on a quilt to make the bed comfier. That helped a lot. I’m now lying on the single quilt I already had and using the double quilt on top of me, which is making me feel very cosy 🙂

I also bought other items to help us during the relapse (I’m grateful my DLA came through when it did). Special wipes to make cleaning me up after using the bedpan much easier. A purple clip on LED light that meant I could look at things without it being too bright (which Johan loved so much for searching for things in my room that I ended up getting him one, too). A new eye mask that completely blocks out light, after discovering in hospital mine wasn’t good enough. Some frozen pureed meals so I could have something nice to eat (Wiltshire Farm Foods do them- they actually taste really nice for pureed food). Talcum powder to help stop certain areas getting sore. A longer extension cable so I could move my lamp so that Johan and carers could actually have some light to see by when they were dealing with me (I could manage it for short periods while wearing my sunglasses).

I coped with the relapse with a lot of help. My friends on Facebook and Twitter were really supportive, with lots of offers of help and lots of squishes. They really helped to keep me going 🙂 I had Penguin and Penelope with me all the time, even when I was in hospital, and they made me happy even through the hardest bits. My awesome morning carer helped by doing the little bits of personal care I could manage quietly, and talking to Johan when I couldn’t manage anything. And of course, Johan was there all the way through, supporting me, looking after me, and being generally awesome.

I’m now doing quite a bit better. I’m still very weak and brainfoggy, but I can get in my wheelchair (yay for recline and tilt in space!) and go in the living room. I’ve been able to play a bit of World of Warcraft Mists of Pandaria, which I’m loving and is a great distraction from the pain and my other symptoms. I can eat solid food again, which means I’m wanting to eat all the things! (but I still have a very small appetite so not eating enough yet- I’m hoping the nausea will ease  off enough soon so I can eat more). My first non-liquid/pureed meal ended up being quail from the local Lebanese restaurant (they do deliveries too). It was very nommy, though Johan kept calling me a posh git 😛

I’m not well enough to go out yet, but that will come in time, hopefully. My sleep is still a bit all over the place- ended up getting 18 hours yesterday, and I woke up yesterday afternoon and I’m still awake writing this at 9am. I do have a couple of things to sort out now I’m a bit better. I’ve got my DLA form, which I haven’t started yet and will be hard, and I’ve got my room to sort out as it got rather messy during the relapse. I’m going to put all the relapse stuff in a box so they’re not in the way but easy to get if I relapse again. As much as I hope not to, I’ve got to be open to the possibility. I also need a blood test before I see my consultant so need to ask the nurses to come out and do it, as I don’t know how long it’ll be before I’m well enough to get out to the surgery.

The cause of this relapse was excessive noise from one of our neighbours and their visitors (massive amounts of shouting and banging). It’s scary that half an hour of too much sensory input can make me so ill for so long. It has been reported and our neighbours are being given a formal warning (another neighbour has also complained, and we’ve complained before so it’s not a one-off) so we’re hoping it doesn’t happen again. We don’t want them to be in trouble, but my health needs to come first (as does Johan’s, as it affects him, too).

I’m grateful that I’m doing better. Being able to go into the living room and play on my computer is just brilliant. When I get a bit better I have Doctor Who to catch up with (I think I saw the first two before the relapse, and kinda listened to the third when my relapse hadn’t got that bad). Watching television is harder for me than playing World of Warcraft, as there’s more movement and conversations and a plot to follow, and in World of Warcraft I can check things if I get lost (plus I have it all set up so it’s easy for me- lots of text notifications and warnings and stuff).

The only problem I’m really having at the moment is I’ve lost most of the padding from around my bottom, so sitting in my wheelchair makes my bottom sore. It’s a really comfortable wheelchair with very thick, contoured cushions, and I’ve never had problems with it before even when in it all day. I think I’m probably more susceptible to pressure now though, so I’m going to have to mention it when I go for my wheelchair assessment. In the meantime I’m using my doughnut cushion, but that means my head doesn’t get quite as much support as I’m too tall for the chair and it makes me even higher, so I take it off after a bit to give my head a chance to rest. I’ve also been getting Johan to change the recline on it occasionally to shift my position a bit. I’ve not developed any serious pressure sores yet, so if  I can keep it that way it’ll be good.

I’ll get there. I’m determined to get better, and so long as I’m careful, keep listening to my body, and do what I’m able to I’m sure I’ll improve. I’ve accepted this will now probably take years rather than months, but it will happen 🙂

3 thoughts on “Doughnut Cushions and Purple Lights

  1. I was recently hospitalized for severe pancreatitis. What you describe was similar to how I felt in hospital. My sensory issues were worse and I really struggled to communicate. I’m sorry that you go through that regularly. Was awful and I was foggy for so long. I need to go back for a procedure and I am kind of scared. Hoping it goes well. By the way I hate the bed pan too. I explained I have sensory issues & had trouble being able to tell when I had to go. I begged for a catheter and they put one in! It may have been because I was so sick & my kidneys kind of shut down but I was glad to have it instead of using a bedpan!

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