Fresh Mud

After the previous success of my speech therapy outing to Wagamama, Louise, Olivia, and I decided to do it again. Continue reading →

It is a sad and depressing fact that the people who tend treat me with the least respect with regard to my disability are those closest to me. Continue reading →

Back in 2015 I was in hospital with pneumonia. Continue reading →

I am a creature of habit and I like routine. Continue reading →

I have been taking co-codamol for around 12 years, probably longer. Continue reading →

When I first came to stay at the neurological centre I currently live in I came for respite as my health had taken a nosedive and, though I still had bladder control, I occasionally had bowel accidents, so I started wearing a pad when I was in my wheelchair. Continue reading →

I had my flu jab and fourth COVID booster two days ago, one in each arm, and, naturally, I felt like shit afterwards. Continue reading →

Having received care in one form or another since 2006, I have met a wide variety of people. Continue reading →

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 →

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 →

Today I got my ear syringed after being partially deaf for five weeks. Continue reading →

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 →

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

Sometime after our outing to Wagamama, Olivia handed off my speech therapy to Louise. Continue reading →

I should rename this website “the cellulitis blog” because, guess what? Yep, that's correct: I have it once again. Continue reading →

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 →

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 →

I started feeling rough around 10pm on Tuesday the 14th so I asked a carer to take my temperature; it was 37.1°C. Continue reading →

If these entries had a timestamp then this one would read 2:31am. Continue reading →

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 →

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 →

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 →

After six months of no updates here, it's ironic that this entry is on the same subject as the previous one. Continue reading →

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 →

I had my first vaccination on Friday 29th of January; Continue reading →

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 →

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 →

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 →

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 →

On Thursday, Liv (one of my 1-to-1 carers) and I walked the half mile or so to the nearest Costa. Continue reading →

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 →

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; Continue reading →

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 →

(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. Continue reading →

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 →

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 →

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 →

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 →

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

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 →

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 →

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. Continue reading →

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. Continue reading →