Fresh Mud

A playing card collecting, science fiction absorbing, certified inhabitant of The Universe living with FSH muscular dystrophy. Questions?

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Using A Non-Invasive Ventilator

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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A Walk To The Coffee Shop

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 Walk In The Park

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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A Sleep Study

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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It Affects Everything

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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Gabapentin Update

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.