It would be fair to say that 2025 has been a bad year. After a year of tests and waiting while the NHS continues to move at a pace that is no doubt causing 100,000’s of people to be sicker than they should be, I have had to go fully private to get some movement.

A diagnosis has now been given and Myalgic Encephalomyelitis is the culprit. An illness that is diagnosed by ruling out almost everything else and one which some medical people do not even recognise.

There is a long history and some controversy to this illness, but if you have it, you really do know you have it.

I cannot stand up without feeling lightheaded, if I walk my dog slowly (he is a sniffer) I am shattered at the end of the walk, and if I take in too much stimulation, which can be simply walking around brightly lit shops or looking at screens, it can easily end in a crash. I am so tired all of the time, I had a crash recently which was the biggest yet, and the tiredness is becoming deeper and more frequent so I need to change things.

All exercise above a short and slow walk is now out of limits, no caffeine or alcohol, no spicy food and effectively a life I never thought I would have until my 80’s. Trying to pace myself is hard because it is very difficult for an individual to understand what makes them crash.

It is a rare illness in that the natural instinct to push through and get on with it will cause it to get worse. The realisation that your life, or large parts of it, has suddenly stopped is hard and there is a grieving process to go through. Everything about this illness is difficult and suicide rates are high among sufferers.

My wife and I are trying to work out what to do and I am having to face up to the fact that my current job is no longer feasible.

I had a dream last night where my late grandad was stood next to me watching my children play when they were young- he said “Memories Shaun, great memories. You won’t be making any more of them, come join me when you’ve had enough.”

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