Don't worry i'm 'armless

Originally written November 2011 — updated for clarity in 2026

Living with FSHD (Facioscapulohumeral Muscular Dystrophy) means facing changes you don’t always see coming, and sometimes humour is the only way to soften the edges. The title might be a bit cheeky, but underneath it is something real: the slow, noticeable progression of muscle weakness — especially in my arms.

When the doctors told me things were changing

Last year, the doctors at the National Hospital explained that my FSHD progression had shifted. They told me I would likely lose the use of my legs within three years and my arms within five. After that I will lose other muscles. My hands and fingers will be affected. My face will become a mask, I'll be unable to close my mouth lose my smile, and my ability to talk will go. A common thing with FSHD. My heart and lungs will be affected, and as my legs and arms twitch, so will lose muscles. This causes heart attacks and suffocation. One day, I'll be a non-verbal body in the bed. Hearing that was incredibly hard. My original diagnosis gave me fifteen years before reaching this stage, and back then fifteen years felt like a lifetime away. My next 15 will be significantly worse.

Over the past year, the predicted decline has become real. My balance is worse, I fall daily without support, and I’m relying on my wheelchair more — which brings its own challenges now that my upper body strength is fading.

The part I didn’t expect: losing arm strength

My legs have been weak since day one, so their decline hasn’t shocked me. I always knew I would end up in a wheelchair. My arms — that’s different. Losing arm strength feels like losing independence in a new way.

I’ve always taken pride in finding ways around my limitations. Piano, for example: something I love, something I’m good at, and something that doesn’t require legs. This is also true for my creative art and drawing ability. However, as my FSHD arm weakness becomes more prolonged, even that is slipping away.

Recently I was asked to play guitar. I know the how and trained as a child, so I thought, “Why not?” Then reality hit: I’m not 16 anymore. My arm strength has changed. Holding the guitar comfortably was painful, and keeping a steady strumming pattern was nearly impossible. I switched to plucking, which helped, but by the end I was in a lot of pain — not that I admitted it at the time. Pain is often a problem. 

What the weakness actually feels like

The sensation is hard to describe. It’s mostly in my right arm, the stronger one. The closest comparison is this: tense your bicep for as long as you can, then relax. That lingering “ghost” feeling — that’s what I get, except it comes with a clear sense of weakness underneath. 

Here’s how the muscle weakness shows up day‑to‑day:

- Struggling to hold a normal cup of coffee  

- Pushing myself up from a chair, which makes my back curve and my shoulder blades “wing”  

- Lifting my arm even 10 inches  

- Quick reactions, like turning a steering wheel  

These might seem small, but they’re the things that make me feel capable. Losing them is frightening.

Telling myself not to worry

Looking back at the title, “Don’t worry, I’m ‘armless,” the part that stands out isn’t the pun. It’s the “don’t worry.” I keep repeating that to myself. Don’t worry. This doesn’t stop me being me. I can still talk… which means I can still argue. Small mercies.

I suppose I just needed to get this off my chest. Keeping these fears to myself only leaves me isolated.  

2026 Reflection

Looking back at 2011, I can feel the fear sitting between every line. It stayed for a while. I was terrified of losing my arms, terrified of what that would mean for my independence, and terrified of the timeline the doctors gave me. Yet here I am in 2026 — fourteen years later — still using my arms. Not easily, not without a neater eater or one arm propping up the other, but still using them. Still living with FSHD in a way that completely ignored their predictions.

I struggled walking for a while and then became a full‑time powerchair user in 2020, far later than they expected, and even now I’m more independent than I ever imagined I could be back then. I’ve adapted, adjusted, rebuilt routines, and found new ways to do things I thought I’d lose forever, like completing a marathon. The progression is real, and the decline is real, but so is the resilience. So is the stubbornness. So is the life that kept going long after their prognosis said it wouldn’t.

Reading this younger version of myself, I want to tell him he was stronger than he knew. The future wasn’t what he feared — it was longer, fuller, and far more his own.