Fresh Mud

Living with FSH muscular dystrophy. Questions?
Entries are listed latest first.

I use a C-PAP ("constant positive airway pressure," a form of non-invasive ventilation) machine at night as I breathe too shallow whilst asleep, resulting in me not taking in enough oxygen and not getting rid of enough carbon dioxide. I wear a mask that's connected to the machine via a rubber tube, and the machine pushes air into my lungs as I breathe in.

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On Thursday, one of my 1-to-1 carers and I walked the half mile or so to the nearest Costa. At lunchtime it was drizzling rain but, fortunately for us, it had stopped by the time we left at 2 o’clock.

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A few weeks ago, I managed to get out of the “house" and go for a walk in the park in the estate opposite the neurological centre I live in.

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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.

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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!).

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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.

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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.

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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!

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