2026: My FSHD Now

My blogging has been patchy. Between 2014–2019, I was at the top of my game, writing most days. Then 2019 brought drama, Covid hit in 2020, Dad died in 2022, I started studying theology in 2023, and Hannah and I married in 2024. Additionally, as the boys got older, writing about them became complicated. Blogging changed. I changed.

Five years and 32 posts later (roughly six a year), I'm writing again. It feels good. However, I realised I haven’t written an FSHD update in years.

The last post was my acceptance of using a manual wheelchair for bad weather, uneven ground, and to stay safe.

Upgrading to a powerchair changed everything. I started going out alone. I travel around Rochester, Sittingbourne for church, the community hall, and social activities, and even further, like Canterbury a few weeks ago to meet the bishop and wander around with Hannah, something impossible a few years ago.

Bizarrely, people are noticing me. Station staff now chat like we're old friends. Random strangers stop me to say they’ve seen me elsewhere. The chair hasn’t just given me mobility; it’s given me visibility.

While this sounds positive, the reality of my health has shifted.

I can no longer stand independently. I used to push up on furniture, twist, and bend to stand. That stopped around 2020. Now, Hannah lifts me, but standing is shaky and unreliable, with my ankles, legs, or back giving way at any moment. Once standing, I can walk very few steps with Hannah’s support, rocking side to side like a penguin’s waddle, but that’s it. Five steps before I need to sit.

I always knew this would happen. Yet losing this ability hasn’t been the crisis I imagined. I just had to unlearn the ableist idea that walking equals freedom. Instead, transfers have become a thing. I either slide into or out of the chair while someone pushes against my heels or pulls my ankles, or Hannah lifts me.

What I didn’t expect was how hard the arm weakness would hit. Lifting a cup takes both hands, with my left holding my right wrist to stabilise and lift. While brushing my teeth and hair is possible, it takes a lot of effort and energy. Eating means lowering my head to the spoon (I shake too much for a fork) or, on bad days, using the neater eater to help.  

It helps, but it’s frustrating, and relies heavily on hand and wrist strength. My right hand is weakening. As a pianist, that one hurts. My fingers clump together slightly, forming the same shape I use to drive the wheelchair joystick. Writing and typing have also been affected. It's not impossible, but the early signs are there, resulting in using speech‑to‑text software.

My speech has also become slurred, with certain letters tripping me up or with words I mispronounce. I noticed it before, but now I feel it and hear it more. People correct me or make jokes, but it's the FSHD and not stupidity.

Sleeping is now difficult. Regular pain requires constant position changes, but sleeping on my sides is no longer possible due to weakened back muscles. So I now lie solely on my back, with my legs straight, bent, or raised. Alongside this, my mouth relaxes when I sleep, causing a dry mouth, a horrible taste, and consistent dribbling, something I really hate.

Mouth issues are happening elsewhere. Food and drink escape and dribble down my face, and my relaxed, resting face has a droop now, especially on my right side. Subtle, but there.  

My posture has changed. Sitting upright takes effort, with my back, shoulders, and neck slouching.

 Travelling in my chair means I constantly pull myself up to look ahead instead of at the floor. This also affects my driving, which now becomes painful. My neck drops, resulting in me wearing a supporting neck cushion; my shoulders slouch, making them tense, burn, and become sore; and manoeuvring the wheel is harder than I want it to be. I can do it, it’s just harder and comes with consequences.

After a lot of discussion, Hannah and I have decided I’ll stop driving when the Motability car renewal comes. I can still drive, but I'm now super vigilant. I leave bigger gaps for braking time, drive slower, and think carefully about every choice. Although I drove the 6‑hour‑plus journey to Cornwall and back for a long weekend with Hannah in 2017, I can't drive for more than an hour and a half now without physical consequences. I can do more, but the cost is too high. So the next car will have a ramp so I can roll straight in. It is a decision I don't want, but know I need.

So this is where I am now.

I’m still me: independent, out in the world, and causing trouble. My FSHD, however, has moved on, quietly and gently in some places, loudly and dramatically in others. There's no drama here. Just an honest and overdue update.