Life with MS, always adapting to a new normal
Always adapting to a new normal
My life with MS as a retired man is much easier than when I was working. Medical retirement took me in 2012, aged 58. I then spent a couple of years wandering around trying to adjust to the new life. Two years talking to a counsellor for 45 minutes once a week in the evening helped me to adjust. Now I am a content person though I do still occasionally become angry when contemplating what MS has robbed from me.
The early days
I am quite sure my MS started in 1972 initially it maintained an exceedingly low profile. There were very occasional moments in the 1980s when I knew something was not quite right but, nothing obvious that something might be amiss. Even after diagnosis of RRMS in 1996 life carried on as normal. I was just a normal Dad and husband finding my way as a computer geek. I was blissfully unaware of the future.
Uncertainty
Diagnosis changed to SPMS in 2000. In 2005 my life began to change permanently. It was not sudden, just an accumulation of a little things that no one else would notice. There was still very little information in the public domain on multiple sclerosis but uncertainty crept into my life. Something was gnawing at me with the disease called multiple sclerosis, the fear of the unknown. Its incurable, and no suitable treatment was offered to me This disease was slowly changing my physical life for the worse. My new life, walking with a slight wobble, no more dog walks or driving. Always looking for signs to the nearest loo just in case I suddenly needed a pee. Obviously MrsB knew about these problems and a few close friends.
Self esteem
Now over 50 years old, my health was starting to worry me, eroding my self-confidence. The thoughts of not being able to move on easily from one contract to the next was a cause for concern to a contractor. When working I was able to put these thoughts into a bottle and get on with my life. The periods between contracts changed from weeks to months, I became depressed and difficult to live with when out of work. Who on earth would want to employ a man with multiple sclerosis were thoughts dominating my life. Retirement was out of the question, I just had to keep on buggering along.
Decision time
December 2011, a contract in Jersey was not renewed. The idea of a Christmas break and a chance to recharge my batteries appealed to me. New Year 2012, I was invited to an interview at a large financial institution in London. It did not go well for a variety of reasons. Back at home after the interview I told MrsB my time as an international freelance computer consultant were over. Welcome to the world of medical retirement.
Retirement in 2012
The uncertainty of multiple sclerosis now dominated my life. There was no treatment for secondary progressive MS, it was slowly but inexorably getting worse. I had to use a mobility scooter, could not walk unaided and was labelled a frequent faller. Bladder continence problems were eventually eliminated through botox. OK no wheelchair yet, although I owned one. Retaining my independence was important but gardening and driving were out of the question. My world was getting smaller.
Life with MS
The dark cloud of uncertainty with my MS grew and grew. Serious constipation started in 2020, the latest problem plus an inevitable decline with my cognition and memory. An accessible bathroom with a seat in the shower is essential. On the positive side I am coming to terms with this horrible disease. Still no signs of a cure but it is a contented life despite numerous disabilities especially walking and standing
Life despite MS
My priorities have now changed through necessity. Everything just takes longer and asking for help is part and parcel of my daily life. Every morning over an hour to dress myself and eat breakfast, then an hour in the bathroom.
Cooking is something that has always given me immense pleasure but that has been scaled back, crippling fatigue is never far away. Also very clumsy when with my left hand. Baking cakes, riding my minimalist Travelscoot mobility scooter and listening to audio books are in my daily life with MS. Regular trips up to London to visit museums and the theatre are also in the mix. I have adjusted to retirement but it took a few years.
January 2025
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My life with MS and invisible disabilities
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