I’ve been feeling tired lately, more tired than usual, so I spoke to one of my regular nurses and she suggested that they do a sleep study; they’ll attach a pulse oximeter to measure my blood oxygen saturation as I sleep. It then occurred to me that I wear a Garmin fitness tracker in bed to monitor my sleep and it measures my pulse and oxygen saturation, too.
When I was first diagnosed with muscular dystrophy, 35 years ago when I was 12 years old, it meant very little to me; the news affected those around me more so, my mother especially, but to me it was just words. It explained a few things that had always been there, such as my skinny upper arms, my eyes not closing when I slept, and my speech impediment, but there was very little in the way of information; that is to say the doctors couldn’t tell me much about it and, seeing as I was young, I was excluded from most discussions anyway. As the years have passed and my body has deteriorated, I can now fully understand what it means to have muscular dystrophy, and this is a contributing factor to my depression, but I’ll talk about this in a later post (yay!).
After just over two weeks of taking the gabapentin, the spaced feeling has dropped off and the pain in my thighs and hips has eased significantly, being almost nonexistent most days. This is the best outcome I could've hoped for so I'm pleased.
At the age of about 20 I noticed I was getting back pain where my back was starting to arch due to the weakening muscles. For a few years it was bearable but it increased as time went on. Fast forward to the age of 28 and I was taking cocodamol three times a day - 500mg of paracetamol with 30mg of codeine.
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.
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!
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.