My long journey with multiple sclerosis

A long journey that was multiple sclcerosis

1972 was the start of a very long journey

This is the story of 45 years of my life living with multiple sclerosis as we both grew up. I did not piece the whole story together until I took medical retirement in 2012. My long journey with multiple sclerosis.

My long journey with multiple sclerosis

It all started in 1972 and I was almost 18. On a hot summer’s day I went out for a drink with a couple of friends. After a pint I was desperate for the loo. I went to the gents but then I could not have a pee. Was this the start of my long journey with multiple sclerosis?

I completely forgot about this event until a few years ago.  Nothing like this happened again for 7 years but then it was very different.

I am now 25

Working in the antique silver department of the auctioneers Christies South Ken., I was an auctioneer’s clerk and sat up on the rostrum next to the auctioneer. Apart from trying to look important I made up the bills as the auction progressed. Remember this was still in the age of pen and paper.

It was half way through a silver auction and suddenly I was absolutely bursting to go to the loo.

Oh my God what should I do? This had never happened to me before.

Do I try to hold on or leave and go to the loo? I could not stop the auction.

Then the lock gates opened, wooosh and my bladder emptied itself.

I was totally mortified. Even now 38 years later I can still remember that feeling of inevitability. It was going to happen, I was helpless, I had no control over my bladder whatsoever.

What did I do about this incident?

I put the problem down to stress plus I had just had a very bad cold, at least that is what I reckoned. I was living with my future wife and I think she was just as non-plussed as me. The problem disappeared and life carried on as normal. Young men like me will do anything to avoid going to the doctor.

Smaller relapses

A few years later occasionally I had sudden urges to go to the loo but nothing else significant MS-wise happened to me. Looking back I realise this is my undiagnosed MS popping out to say “Hello”. Incidentally I am reasonably certain it would not have been recognised in the 1980s.

I was 40

I got double vision when driving in 1994, a bit frightening. The next day I saw my GP and 6 months later a neurologist said I had MS; I had never heard of it then. The consultant then said “OK Mr Burke, I will see you again 6 months’ time”. There was no advice, help or backup. It was as brutal and brief as that. I soon found a new consultant.

Six years later in 2000 my MS morphed into secondary progressive. No remission, instead everything very slowly gets worse and worse. MS introduced me to his groupies one by one

Now I’m 58

Medical retired in 2012. From the ashes of retirement I created this website. It helps me to live with the disease and it releases my inner creativity.  Who says you are too old to learn new skills?

Associated Links

My MS Clock has gone back a couple of years

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Disabled access is not a tick box exercise

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February 2019

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