My MS diagnosis was 25 years ago. Small relapses were always followed by a remission. I was working and leading a perfectly normal life or so it seemed to an outsider. In 2000 my remissions stopped. The anxiety, bladder and walking problems of MS were now permanent and these problems also slowly got worse and worse.
My friendly MS consultant prescribed some drugs to help me manage these permanent symptoms. A good quality of life is restored. Sadly it is only a temporary respite, every few years MS bites off another chunk of my life and the management needs to be reviewed. With time disabilities that no one else could see started to evolve.
If RRMS is not treated with the appropriate drugs it will just creep on and on. I was diagnosed long before there were any drugs for people with MS. My RRMS morphed into SPMS in 2000 and it slowly nibbled away at my drive and my energy. Despite being stubborn there comes time when work is no longer a viable proposition. In 2012 I retired on medical grounds, this was never part of the master plan. ☹.
Today people cannot see all my subtle disabilities and even some of the visible signals are misinterpreted. I use a funky mobility scooter, known affectionately as The Trike, because walking is impossible. People are surprised, even astonished, when I stand up on my feet. If push comes to shove, I can even stagger a few yards but I must always hold onto something.
She isn’t my carer, she is my pillar. She is the only person who knows all my problems, visible and invisible. I am an independent minded person but there are basic things I cannot do that other people just take for granted. Some of these problems are not obvious.
I cannot carry a cup of coffee or a plate of food. The reason is stunningly simple. I must use both my hands to hold onto a wheeled walker when I walk around the house. My memory is atrocious. Double vision makes reading difficult. The motor control in my fingers has deteriorated to the extent that using a screw driver is a challenge.
People see me sitting in a normal chair in a restaurant or coffee shop and they have no idea that I am now chronically disabled. These people need to come and live in our house for a day or two. Only then will they see my day-to-day problems of living with MS.
My life has changed enormously since Jan 2012 when medical retirement pulled the rug out from under my feet. My hidden disabilities have grown, both in quantity and impact upon my life. MS is frequently seen as a physically disabling condition. In the last few years the mental problems have caught up and even overtaken the physical problems
When I have a shower I must sit down in the wet room. Writing is very difficult and it’s illegible. Nowadays using a corkscrew is not easy, I usually win but it is a challenge. I have great difficulty doing up or undoing buttons of a shirt. My motor skills are vanishing too fast. Sometimes I just run out of energy and must sit down, that’s called fatigue. These are all physical problems which are frustrating because I know they are because of my MS
Undoing a bra today would definitely be a fiddly physical challenge too far. There are some advantages in being a bloke who is over the hill, this is one of them.
The mental issues are much more subtle. Are these problems such as cognition, concentration and memory happening because I’m getting older or are they a by-product of my MS? Could the underlying issue be medical retirement that leaves me feeling unfulfilled? Nowadays I certainly feel a loss of self-esteem and self-value.
I can look my very old friend MS straight in the eye and tell it to take a running jump. I will not allow my MS to howl or wail but it never goes away. Just when I have mastered the art of living with it an existing disability just gets worse. Occasionally a new disability will creep out of the woodwork. Fatigue has recently appeared in the rear view mirror.
I always make an effort to come across as a cheerful happy person. No one wants to associate themselves with a sad and miserable old git. In my eyes the glass is always half full even though the edges are a bit chipped.
I tell myself that my problems are minor in comparison to those of so many other people with MS. My life could never be described as boring. I never know what is round the next corner. Even with disabilities that make getting dressed take me a long time I always want to get up and enjoy the day.
I was diagnosed with MS in the last century and medical retirement was thrown at me in January 2012, it was a shocking event. Since that momentous day I have built the website www.aid4disabled.com, give talks to nursing students on long-term conditions and I have my finger in all sorts of pies. I get around using a funky mobility scooter because I cannot walk unaided, cooking when I have the energy and talking to the plants in my garden.