Fresh Mud

A blog about living with FSH muscular dystrophy. Questions?

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Entries are listed in reverse chronological order.

Entries in 2022

One-to-one time

Sometime in 2016 I had the idea of asking my funders for some one-to-one time each week so that I could go out under my own steam rather than rely on my family and friends. Continue reading →

No more masks

The management at the neurological centre I live in gathered as many staff as they could in reception yesterday afternoon and announced that they no longer needed to wear a face mask whilst they are in the building. Continue reading →

Outbreak measures

It was announced on Friday at the neurological centre I live in that at least one member of staff and one resident have tested positive for COVID-19, and so we have to go into what management like to call “outbreak measures.” Continue reading →

Third COVID booster

As the title suggests, I had my third COVID booster yesterday, and, as expected, I feel like shit.

I Got Pinged

I was pinged by the NHS COVID-19 app just after 1 o'clock this morning. Following the app's advice, I took an LFT test and, for extra precaution, a PCR test also. Continue reading →


Entries in 2021

Care Funding Update

Following on from a previous entry, after weeks and weeks of trying and failing to get a meaningful reply from the lady who was dealing with my refund, I received a bill for an outstanding amount; I knew that I still owed some money, but I wasn't sure of the actual amount. Continue reading →

Speech Therapy And Noodles

In a normal session, my speech therapy consists of me and the therapist, which used to be Kath but is now Olivia, sitting in the lounge and the pair of us doing a crossword, with the idea being that I project my voice to make myself heard clearly. Continue reading →

Care Funding

Back in 2013, when it was decided that I should use a C-PAP machine overnight, I was approved for full CHC (continuing healthcare) funding because my care would need to be increased to include overnight carers. Continue reading →

Rebuilding My Wheelchair Tolerance

After being in bed for just over three weeks with cellulitis, I've found that the length of time I can comfortably stay in my wheelchair has shortened noticeably; it is currently around two hours before my thighs and/or hips start to ache. Continue reading →

Cellulitis

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. Continue reading →

COVID-19 Is Back In The Building

On Friday 22nd a sign reading “Isolation” was posted on 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. Continue reading →

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. Continue reading →


Entries in 2020

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. Continue reading →

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. Continue reading →

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. Continue reading →

It Affects Everything

When I was first diagnosed with muscular dystrophy back in 1985, 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. Continue reading →

Gabapentin Update

(Following on from a previous entry.) 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 almost as good an outcome I could've hoped for.

Adding Gabapentin To My Daily Meds

Around the age of 20 years old, I noticed I was getting 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. Continue reading →

The Eyes Have It

One of the symptoms of my particular form of muscular dystrophy that has always been present is the inability to fully close my eyes, especially whilst asleep. Continue reading →

A Bit Of My Recent History

When I came to this neurological centre in Gloucester back in December 2014, it was for respite and only supposed to be for a few months, but after being here for a while I asked if I could stay. Continue reading →

A Fellow Resident Has COVID-19

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. Continue reading →

Painkillers

I take painkillers daily: two co-codamol (codeine and paracetamol) every four hours, four times a day. Continue reading →

Sitting And Balancing Follow On

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). Continue reading →

Practising Sitting And Balancing

This afternoon I had a session in the gym with Adrienne, Sam and Aaron; Adrienne 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). Continue reading →

Welcome

I was born with FSH (facioscapulohumeral) muscular dystrophy but wasn't diagnosed until I was 12 years old; it has affected me almost my entire life and it will only ever get worse. And on that cheery note, welcome to my site.