The Hospital Obstacle Course
You’d think a hospital would be the one place fully equipped to handle a complex disability, wouldn’t you? Unfortunately, my recent four-day admission proved that assumption entirely wrong.
I have Primary Progressive Multiple Sclerosis (PPMS). I was recently hospitalised to treat a severe urinary tract infection (UTI). While a UTI might sound standard to some, in the context of MS, it is a dangerous medical emergency. Yet, instead of focusing purely on healing, my four days were defined by a grueling logistical battle against an environment completely unsuited to my body.
The Reality of a Modern Hospital Stay
The ward lacked a single accessible bathroom with a raised toilet, and the doorways were too narrow to navigate comfortably. Because I cannot transfer independently and standard hospital setups offer zero postural support for my condition, I had no choice but to spend the entire four days living out of my powerchair.
Thankfully, my powerchair tilts and repositions, allowing me to shift my weight and relieve intense muscular pressure. Without my own technology, I would have been in excruciating pain. My chair wasn’t a luxury; it was my only source of medical necessity in a room that provided none.
It is a stark and frustrating irony: a healthcare facility treating an infection while simultaneously ignoring the basic physical realities of the patient.
Why a UTI is a Neurological Crisis in PPMS
To understand why this lack of accessibility was so perilous, it helps to understand what a UTI actually does to someone with PPMS. It doesn’t just cause local discomfort; it triggers a pseudo-relapse (also known as Uhthoff’s symptom or recrudescence).
While a UTI doesn’t cause new permanent damage to nerve pathways, the inflammation and elevated body temperature temporarily ‘short-circuit’ the nervous system, causing existing PPMS symptoms to flare up dramatically.
Here is exactly how a UTI wreaks havoc:
1. The Sudden ‘System Crash’
When your body fights an infection, your core temperature rises—even by a microscopic amount you might not feel as an actual fever. Because MS damages the protective myelin coating on nerves, these exposed pathways become incredibly heat-sensitive. This slight temperature spike slows or completely blocks nerve signals, resulting in:
- Extreme Fatigue: A sudden, overwhelming exhaustion that makes even lifting an arm feel impossible.
- Severe Muscle Spasticity: Increased stiffness, painful spasms and tightness (which is exactly why my powerchair’s tilting and pressure-relieving functions were so vital).
- Profound Weakness: A sudden loss of the ability to stand, transfer or grip objects that were manageable just days prior.
2. The Bladder Feedback Loop
PPMS often damages the nerve pathways controlling the bladder, leading to a neurogenic bladder (where the bladder fails to empty completely or contracts randomly). A UTI causes intense local irritation, triggering severe bladder spasms, urgency or complete retention. Because the bladder cannot empty fully, stagnant urine creates a vicious cycle that makes the infection incredibly difficult to clear.
3. Neurological Confusion
In a typical body, a UTI announces itself with obvious symptoms like burning urination. But because PPMS disrupts nerve sensation in the pelvic floor, I might not feel any burning at all. Instead, the very first sign of a UTI is often a sudden, unexplained inability to transfer, increased brain fog or a dramatic spike in leg spasms. This is why doctors always check the urine first whenever an MS patient experiences a sudden neurological downturn.
Accessibility Cannot Be an Afterthought
The Silver Lining: This terrifying setback is temporary. Once antibiotics clear the infection and the body’s inflammatory response calms down, the pseudo-relapse subsides, and symptoms return to the previous PPMS baseline.
But knowing a flare-up is temporary does not excuse a hospital from making it worse. When a medical facility lacks fundamental accessibility features like wider doors and properly adapted restrooms, it inadvertently compromises the care of the very people who need it most.
We need to talk about why basic accessibility is still treated as an afterthought in modern medicine. Hospitals should be spaces of healing and dignity for all bodies—not an obstacle course for those of us in wheelchairs!
