Fresh Mud

A blog about living with FSH muscular dystrophy. Read more →

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Entries are listed in reverse chronological order.

Entries in 2022

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; this prompted a huge cheer and most of them then removed their masks, which did make me wonder how sensible that was with so many people in one place, but, nevertheless, it was a happy moment. Continue reading →

Hearing in stereo

Today I got my ear syringed after being partially deaf for five weeks. I was supposed to get it done a fortnight ago but the taxi I had booked cancelled on me 30 minutes before the appointment; this was incredibly frustrating as they gave no reason and I couldn't get an alternative arranged in time. 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.” This means that only family/friends who are designated “essential caregivers” are allowed in. Plus, staff are back to taking a daily LFT. Continue reading →

Third COVID booster

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

Cellulitis Take 4

I should rename this website “the cellulitis blog” because, guess what? Yep, that's correct: I have it once again. There are a few differences this time from what usually happens, the main one being that it started in my right leg for the first time. Continue reading →

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 →

Cellulitis Take 3

I started feeling rough around 10pm on Tuesday the 14th so I asked a carer to take my temperature; it was 37.1°C. Around 1:30am, someone came in and took my temperature while I was asleep, waking me up in the process. About half an hour later, Debbie and Diane came in to do a lateral flow test; they said they were “being cautious because you haven't had your booster,” to which I replied that I had. Once that was done, I went back to sleep only to be woken again, this time by the nurse with some paracetamol; she asked me if I really had had my booster, and I reiterated that I had it in October. (The communication in this place is a joke.) 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. The nurse on duty had 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. Continue reading →

I Had My First COVID-19 Vaccination

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, but around 11 o'clock that night 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. 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. (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. 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. 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. 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. 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. Continue reading →

A Walk To The Coffee Shop

On Thursday, Liv (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. Continue reading →

A Walk In The Park

A few weeks ago, I managed to get out and go for a walk in the park in the estate opposite the neurological centre I live in. 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. 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. Continue reading →

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!). 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. Fast forward to the age of 28 and I was taking co-codamol three times a day – 500mg of paracetamol with 30mg of codeine each dose. As the years went on the dose increased as the pain increased and, by the age of 40, I was taking the maximum dose of 8 tablets a day; this seemed to be enough to keep me comfortable. 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. 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 open and a significant amount of white eyeball showing has caused people to think all sorts of things, including that I had expired in my sleep! 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; I felt really safe here and was looking to move away from where I was living at the time anyway. I was surprised and pleased when my funders said yes with almost no question; my family asked me if I was sure that I wanted to live in a home rather than my own home, but I assured them that it would be a good thing for me and for my health. 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 – I've had two letters and several text messages from the government telling me “you are at extreme risk.” At first I was 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 (ie. 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 for about three weeks. Continue reading →

Painkillers

I take painkillers daily: two co-codamol (codeine and paracetamol) every four hours, four times a day. Most days they ease the aches in my back and hips, and some days they don't quite manage it; and some days they go the extra mile and make me feel floaty-light. 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). I asked someone to remove it and the ache eased a few minutes later. 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). Sam was sat behind me on a huge ball holding my shoulders and stopping me from falling forward whilst Aaron was in front trying to stop me from leaning to my left; Adrienne was also in front supporting me as I really have no core strength! Continue reading →

Have I Accepted The Inevitable?

Chatting to Abid as he was helping me with breakfast, he noticed an icon on my phone home screen named “If I've Died” and he asked what it was; I explained that it's a text file containing all my wishes and related details needed should I die (my eldest brother has access to my phone). He went on to ask, apologising if he was being nosey beforehand, if I had accepted the possibility of it; I said that I think I have, with a bit more explanation. 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.