My Disabilities Explained

Taken in February 2026 wearing a heavy duty welding goggles to block out light and resting with a large blanket and pillow in a seated position. A moody self portrait in monochrome with the subject slightly out of focus.

I suffer from Myalgic Encephalomyelitis commonly known as ME or ME/CFS.

Additionally, I suffer from MCAS, Protanopia and Deuteranopia (colourblindness) as well as from Reynaud’s syndrome.

I am largely homebound and unable to work, physical activity is severely limited as well as cognitive exertion and stress exacerbates my symptoms often for several days. My sleep is so disrupted any form of planning is largely impossible.

I am sensitive to light and sound most of the time and suffer from a wide range of symptoms including palpitations, stabbing pains, neurological and nerve pain, gastrointestinal issues, overwhelming sense of dread, general malaise, and feeling poisoned.

Imagine the worst flu you’ve ever had and imagine that feeling for everyday of the rest of our life and that is what your new baseline or new normal is. On most days you live in darkness and alone having given up any form of exercise, social activities, or going to any public places when doing any activity out of necessity it feels like you have run a marathon whilst not being able to remember the word for box, or sea…

ME

ME is a complex and chronic medical condition that affects multiple body systems.

It most often develops after an acute viral or bacterial infection from which people seem unable to fully recover.

A recent study showed as many as 51% of Long Covid sufferers meet the diagnostic criteria for ME.

It can cause many different symptoms, which can be triggered or worsened by any kind of effort or activity.

ME Symptoms

Symptoms vary by individual, can change over time, and can fluctuate in severity making management incredibly difficult.

The 4 key symptoms are:

Post-exertional Malaise (known as PEM) in which symptoms can worsen and exacerbate after mental or physical activity, this can be immediate onset or can be delayed, typically around 24-48 hours.
Sleep disturbance and unrefreshing sleep; This can be insomnia, hypersomnia, feeling unrefreshed, stiffness on waking. Increasing time asleep does not improve symptoms.
Overwhelming fatigue - including flu-like malaise, chronic pain, headaches, nausea, digestive problems, and sensitivity to light, sound and other stimuli.
Cognitive disturbance; commonly known as brain fog, whereby finding the right words, or remembering, or understanding is impaired.

If you see me and think I am doing well and must therefore be faking being ill or “you don’t look ill”, it is in fact, that I am faking being well in that moment and will with out doubt be spending several days being worse off for it.

ME Treatment

ME/CFS has no effective drug treatment and full recovery is rare. It is criminally under-researched, understood and diagnosis and medical support is difficult due to a history of misleading and poor quality studies by face-saving psychologists who still perceive ME as a psychological or hysteria issue among Women.

The ratios of the prevalence of ME to Multiple Sclerosis (MS) is 3:1 but the funding is 1:10, whilst many identify ME as having a quality of life worse than cancer.

Modern research has shown genetic markers evidencing a physical and multi-system disease and more research is beginning to take place.

You don’t see charity adverts on TV for ME. Most ME sufferers don’t run 5km race for life to raise awareness.

ME Diagnosis and co-morbidities

Symptoms overlap with many other treatable illnesses so its important to seek support from health care professionals. PEM is the unique and tell-tale sign of ME.

Given the multi-system nature of the disease other issues are frequently identified such as POTs, MCAS, Dysautomnia, Fibromyalgia.

MCAS

Mast Cell Activation Syndrome is a condition that causes intense episodes of symptoms when mast cells (mistakenly) alert the immune system that there’s something harmful in body. Similar to an allergic reaction or fighting a virus.

MCAS Symptoms

Flushing, itching, swelling, hives, congestion, breathlessness, increase hear rate, weakness, fainting, drop in blood pressure, stomach pain, vomiting, diarrhoea, gastro issues etc.

MCAS Treatment

Some see benefit from Type H1 and H2 Antihistamines.
Avoidance of and a reduction in diet to safer foods.

Baked “jacket” potatoes, pistachios, fresh chicken, some vegetables, and blueberries are safe foods discovered so far that I can eat with only minor symptoms being triggered.

MCAS Diagnosis

There is a blood test, although often inconclusive and can frequently be a false negative. Instead with guidance from health care professionals, diagnosis is often confirmed retrospectively after a trial of antihistamine medication coinciding with an improvement in symptoms.