When Your Core Gives Way

Living with a progressive condition teaches you to recognise patterns, the shifts, changes, the way FSHD reshapes strength, posture, and movement. I have written about the years of falling, pain, feeling trapped in a body like this, the early arm weakness, the journey into mobility aids, the fear of using a chair too early, the misdiagnoses, the institutional barriers, and becoming a full time powerchair user. Despite all the years and the ever evolving health, my rare condition continues to surprise me as the FSHD world keeps progressing.

My lower back and core strength has begun to fail. It feels like the old days when my legs used to give way. My back twitches. It shakes with a weakness that screams through the muscle. A weakness I recognise, but not the location. I wobble when I sit. I slouch more. My body cannot hold a structured frame.

It has become noticeable eating dinner, getting dressed, lifts, transfers, in the shower chair and on the toilet. Places where I should feel secure. Where I have felt secure before.

I am blessed with equipment. I have a Vertica Lift Seat over a Gerberit Aquaclean. The riser has been with me for years. The Aquaclean is new. We converted the bathroom into a wet room and it made sense to keep everything in one place. The problem is the toilet itself, where the back is larger. The riser fits, but the space behind is further back to fit the functions. If I lean even slightly, I collapse into that gap and against the tank. I cling and hold on. My back twitches. I brace in case I fall.

[Image 2. A modern bathroom showing a toilet fitted with a Vertica Lift Seat over a Gerberit Aquaclean system. The riser includes padded handles to support safe transfers and sits within a white, marble‑patterned wet‑room. Storage shelves hold hygiene items, and a tall bamboo plant adds warmth to the space.]

[Image 3. A modern bathroom showing a toilet fitted with a Vertica Lift Seat over a Gerberit Aquaclean system. The riser includes padded handles to support safe transfers and sits within a white, marble‑patterned wet‑room. Storage shelves hold hygiene items, and a tall bamboo plant adds warmth to the space.]

It mirrors getting dressed and undressed. Pulling a top over the head is sometimes just enough to knock me off balance. I think the fact that my arms are restricted makes that worse. I can't hold on. I can't secure myself. 

In both scenarios, that old falling anxiety hits, like the days when falling was a weekly expectation. Weekly was optimistic. If I fell once, the chance of another increased. When I transitioned to a wheelchair, that fear stopped. I was safe. I shouldn’t fall again. My mind regained security. Losing it now feels like stepping backwards into an old fear I had outgrown.

The shower chair is worse. It is supposed to be a toilet and shower chair. I have no idea how people sit comfortably on it. My muscle loss means I feel like I am sinking through it. The plastic back is easy to clean but not structured. A push forward pulls me back. A push back throws me forward. My core cannot counter the force. The fear of face planting is real.

[Image 4. A shower chair designed for toileting and washing. It has a grey open‑centre seat, padded armrests, large rear wheels with light green tyres, and smaller front casters. The white frame includes footrests at the front. The chair sits in a wet‑room with marble‑patterned walls, a shower hose, and a hanging sponge.]

Eating has become difficult. I have gained weight since becoming a powerchair user. Less movement does that. I try to eat less or when I am hungry rather than at set times. I think it’s working. The MD belly distorts it, so judgement is difficult. However, where my body slouches, it squashes my stomach. I sit down hungry. I raise my hand as high as I can. My head drops to meet the fork. My back curves. My neck arches. I feel like a crumpled ball. My appetite soon goes. I'm full. 

This also affects every day transfers. When Hannah lifts me, it resonates deep inside. I grip, cling, shake, and hold on because I don’t know which way I will fall. Every slide and moment where I need my body to hold itself for even a second. Then the tension and wobble return. I worry I will fall back, fall forward, hit the car door or the floor. I hate that the fear has returned.

I am not even sure what has caused this shift. It could be natural progression. It could be years of relying on a powerchair that holds my posture for me. It could be weight changes. It could be the slow weakening of deep stabilising muscles that FSHD is known for. Many people with muscular dystrophy, MS, spinal conditions, or EDS describe similar stages. Some lose the ability to sit upright. Some develop scoliosis. Some experience nerve pain, spasms, or the crushing fatigue that comes when the core stops supporting the rest of the body. Others talk about diaphragm weakness, rib instability, or the way chronic slouching reshapes the spine. These stories are common online. They are shared quietly in forums, support groups, and disability communities. They are rarely spoken about publicly. It’s an uncomfortable topic.

The pain is part of it. For me, it’s a deep, dragging ache that sits in my lower back, while my front feels weighted and pulls everything forward. The typical “MD belly” as the 2020 photo below shows. 

[Image 5. A side‑on photo from 2020 showing your torso, highlighting the curved spine and the typical “MD belly” associated with muscle weakness. You are standing indoors wearing red shorts. A shoe rack, wall dispenser, and door storage basket appear in the background.]

My back feels stretched and compressed. My stomach crushed. My breathing feels heavier when I slouch. My shoulders sag. My neck strains to compensate. It cascades. One muscle to another. It worries me. It feels like the start of a stage I thought I had already lived through. A stage I believed I had left behind when I stopped falling. 

This is the reality of progression. It is not dramatic or sudden. It is a quiet shift that changes everything. It is the moment you realise that the muscles you relied on have stepped back and FSHD has stepped forward.

This is what living with FSHD and the top severity looks like. It’s not one story. It’s the journey and constant renegotiation of what your body can do.

This is the next chapter.