Fresh Mud

Living with FSH muscular dystrophy.

Entries are listed 10 per page, latest first; this is page 1 of 2.

My second test result was also negative.

My left ear has been blocked since Sunday and, as a result, the tinnitus is extra loud and making me more than half-deaf. I've also been feeling achy the last three or four days, too, and so have generally been a bit miserable. My observations have been taken several times and have always been fine so I'm not worried about coming down with anything.

On an unrelated note, I was tested for COVID-19 again yesterday and decided to stay in my room, and therefore in bed, until I get the result.

One of the symptoms of my particular form of muscular dystrophy that I have always had is the inability to fully close my eyes, especially whilst asleep. This has led to various people being frightened on many occasions; friends during sleepovers, teachers on school trips, and even nurses whilst I was staying in hospital. I say “frightened“ because seeing my eyes partially closed and a significant amount of white eyeball showing has caused people to think allsorts of things including that I had expired in my sleep!

It was never really a problem for me in my youth but as time went on I started getting sore eyes in the morning and increased difficulty when trying to open them first thing; the exposed part of my eyeball would be dry and the lid stuck to it and it would take several seconds of trying to move my eyes whilst holding my lids down with my fingers before the pain subsided and I could comfortably open them.

Eyedrops twice daily have become the norm and, whilst not a perfect solution, they do a satisfactory job. Amusingly, the only foolproof solution I have found to having pain-free and moistened eyes in the morning is to literally stick my eyelid down with micropore tape! Obviously, it is impractical to tape both eyes at the same time so, on the occasions I do this, I choose the sorest eye (usually my left) and then feel like a pirate for the night.

When I came to this care home in December 2014, it was for respite and was only supposed to be for a few months, but after being here for a while I asked if I could stay; I felt really safe here and was actually looking to move away from where I was living anyway. I was surprised and pleased when they said yes with almost no question; my family asked me if I was sure that I wanted to live in a home rather than my own home, but I assured them that it would be a good thing for me and for my health.

At the time I was living alone in a bungalow in Kidderminster and had been there for 14 years. I moved in with my girlfriend after we have been together for around 18 months, but, sadly, she passed away after succumbing to cancer in 2012. I had moved to Kidderminster to be with her and not had no reason to stay, especially in a house that did nothing but remind me of what I had lost.

I was having good care at home with carers from an agency calling in several times a day, and overnight care from a different agency, too. The problem was that I was spending more time alone than I liked and just wasn’t really looking after myself as well as I should have been. Being here in this home and being surrounded by carers 24 hours a day gave me an enormous feeling of safety; I was also getting the therapy I needed and just having people there to talk to helped immensely.

Over the five years I’ve been here I’ve seen plenty of staff come and go, some I’m sad to lose and a few I’m very glad to see the back of! (Occasionally you meet someone who makes you question why they’re in care because they clearly don’t.) I have met some great people here and one or two have kept in touch after leaving; one of these I am especially close with and still socialise with occasionally.

There isn’t really a point to this post other than to add a little more background to my story.

I am officially (currently) negative for COVID-19.

Boom!

Having reduced lung capacity (due to my curved spine and general slouch) puts me at risk when I have a chest infection or something more severe like pneumonia, and especially so with the current pandemic going on - I've had two letters and several text messages from the government telling me "you are at extreme risk" and "don't even go outside." At first I was concerned and a little worried but as time went on I got used to the new routine of doing even less than usual and not seeing some of my favourite people. Yesterday, however, things changed when we were informed that a resident in the neurological centre I live in has tested positive for COVID-19 - two residents were quarantined when they became ill a week or so ago but only one has the virus. Those of us with capacity (i.e. we can speak for ourselves) are being offered the test and the staff are continuing to wear PPE - they always wear gloves and aprons for things like personal care and assisting with meals but they have been wearing face masks around most of us, and other items such as face-shields when the need arises, for about three weeks.

Speaking to my family about it and keeping them up-to-date gave me the opportunity to re-evaluate my feelings and I don't think they've changed; obviously I'm still concerned but having it in the building hasn't really changed things. At first I was a bit "oh, shit!" but then learning that it was only one person (and that they are in a different floor) reassured me somewhat.

I had the test today and I'm going to self-isolate in my room until I get the result; I'll update when I know what that is.

I get tired easily due to my lack of muscle and when I don't sleep very well, like last night, I'm tired and achy all day. Aside from my back and hips hassling me more than usual, my upper arms are particularly sore and I'm only really comfortable when I fold them; this has the occasional effect of making some people think that I'm sulking, as I'm sat there being assisted with my lunch, for example, arms folded like some petulant child!

I take painkillers daily: two cocodamol (codeine and paracetamol) every four hours, four times a day. Most days they ease the aches in my back and hips and some days they don't quite manage it; and some days they go the extra mile and make me feel floaty-light.

Today is a floaty-light day.

Today I had the cushion put back in once I'd been hoisted into my wheelchair and it was fine for a while but eventually, after about two hours, it was causing my right leg to ache somehow; remember that the cushion is on my left-side. I asked someone to remove it and the ache eased a few minutes later.

And I'm still suffering from the exertion during the sit/balance/posture workout yesterday!

This afternoon I had a session in the gym with AE, SM and AN; AE wanted to see how well I could balance and support myself sitting on the edge of a plinth (which is what they call the padded table in the gym). SM was sat behind me on a huge ball holding my shoulders and stopping me from falling forward whilst AE was in front trying to stop me from leaning to my left; AN was also in front supporting me as I really have no strength!

I was scared and felt that that I was going to fall flat on my face on the hard floor several times but I knew that these guys knew what they were doing and so I put my trust in them and (hopefully) didn’t show how nervous I was. They kept apologising for manhandling me and I kept telling them that that was the last thing they needed to do.

The outcome was that I need some kind of support or cushion on my left side as I have a strong tendency to lean against the armrest which gets uncomfortable after a while; I left the gym with a pillow shoved down my side and slightly behind my back with the promise that we would do future sessions and get a proper cushion made.

When I got back to my room I realised that I felt really, really exhausted, more so than I have in a long time. Even though I was exhausted and aching a lot from the effort, I did feel a small sense of achievement.