Fresh Mud

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

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On the evening of Monday 8th February, as I was being assisted into bed, one of my carers noticed a large red mark on my left butt cheek; she took a photo on my phone and showed me and I immediately recognised it as almost certainly being cellulitis. The nurse on duty took a look and said that she would refer me to the GP in the morning; the GP confirmed what I suspected and prescribed some antibiotics.

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I had my first COVID-19 vaccination

As is stated in the title, I had my first vaccination on Friday 29th of January. My GP came around 11am and gave the injection in my right arm. During day I was fine, and my arm didn’t hurt as expected; around 11pm that night, however, I started to feel very cold and was shivering whilst being under five blankets. I woke several times during the night and felt confusion as if I was half in a dream, and was still shivering.

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COVID-19 is back in the building

On Friday 22nd a sign reading "ISOLATION" was posted in the door of the room opposite mine; I asked if the resident who lived there had tested positive for COVID-19 but I was informed that, due to patient confidentiality, I couldn't be told.

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Research and Professor Edwards

In 1987, I was approached by a Professor Edwards and asked if I'd be willing to join his research program which aimed to learn more about muscular dystrophy, particularly FSH, by way of testing patients diagnosed with the condition. (Remember, this was long before the internet or mobile phones so finding information was difficult, as was finding others in the same situation.) I agreed to join the program.

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Mobile Phone Accessibilty

I recently downgraded my phone from an Apple iPhone 11 Pro Max to their latest iPhone SE. The main reason for doing this was because I really missed the home button – Face ID (Apple's way of allowing you to unlock your phone via facial recognition) works well and is consistent, but is a bit of a nightmare from an accessibility point of view; having to pick up my phone and lean forward so it can see my face was, more often than not, a bit of a pain, sometimes literally. Being able to unlock simply by resting my thumb or finger on the home button makes my life so much easier.

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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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