Multiple sclerosis and the double whammy
Disability and the double whammy
Multiple sclerosis has taken over my life very very slowly. That sounds so much better than ruining my life very very slowly. It all started in 1972 and remained in the shadows for thirty years. The disease is now grown up, it’s matured into SPMS. For every disability there is a consequence. I call this multiple sclerosis and the double whammy.
My permanent changes began in about 2000. Occasionally I tripped over a tree-root during a dog walk or had an emergency pee behind a tree. What started off as an inconvenience grew into a disability. These disabilities are life changing and it is the changes to my life that are the double whammy. Disabilities and these life whammies are inextricably linked. 🙁
A double whammy
It is a situation where there are two bad outcomes. Either outcome is bad news but put the two together and it ain’t good. In this case I’m talking about any disability caused by my MS and the impact of it upon life. Does this sound familiar to your life?
Voices in my head
Whatever I do multiple sclerosis whispers in my ear “Careful as you go, you will find something difficult just round the corner”.
With every disability there is a consequence and that is the double whammy. My fingertips are numb so I cannot turn the pages of a book. I have double vision so I am not allowed to drive. The disease makes me anxious so doing anything on the spur of the moment doesn’t happen.
Niggles
When the problem was just a little niggle the far-reaching consequences never crossed my mind. At first I didn’t even see it as a problem or inconvenience instead just an accident. That little problem grows into a disability. Even worse, MS is still nurturing more little problems.
16 years ago
I remember walking along a slightly uneven pavement in Amsterdam and I stumbled and fell over. I stood up, brushed myself down, then I realised I had caught the toe of my shoe on an uneven paving stone. That weekend I took my shoes to be re-soled. I just happened to notice the toe of the left shoe was much more worn than the toe of my right one, strange I thought to myself. Now I have chronic foot drop and leg drop in my left leg and I cannot walk unaided. That was my introduction to foot drop. The change has been very slow, almost imperceptible but definitely only in one direction.
Multiple sclerosis and the double whammy
If I had known then the extent of the changes to my life I would not have believed it possible. The double whammy includes cannot use escalators at underground stations. I can’t do stairs so I must use the lift.
Whatever the problem I don’t allow myself to worry. There is always a work-around and sometimes there are even advantages. I’m disabled so when I go to the theatre MrsB comes for free because she is my carer. We both love the theatre, it’s an unbelievable BOGOFF (buy one, get one for free), a good double whammy.
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December 2019
Foot drop must be so frustrating. I have never learnt to drive so I don’t really miss not having a car. But if my MS got worse and I couldn’t cycle, I would be devastated. I worry about using the use of my hands – as an artist I am not ready to give up drawing.
Hello Siobhan,
MS is frustrating and foot drop is top of the list. Remember there is always a work around, maybe not so efficient, its clunkier but it is something that allows you to continue doing what you enjoy. I did have one bit of luck, no devastating live-shattering relapses. Instead just a very slow and steady journey down the slippery slope
My MS has developed also from a reasonable shuffle a couple of years ago or so to a real struggle with a stick today as I have I have foot drop on both feet. I am doing exercises from the hospital physio and also going to an exercise class to help me to not fall over called OTAGO. It’s very fatigueing but I have to do it. Maybe it’s the last resort. I’m still driving but have hand controls fitted to assist. I have a car Buggy for hols and another for home and use them when I need to cover A little distance. I have to strengthen my core or bust. It’s critical! Where do we go from here? It ain’t getting any better but what the hell!
Hello Richard,
I feel your pain, luckily for me it is in only one foot even so …. Yup, exercise exercise exercise is a necessary evil. Might an FES (Functional Electrical Stimulator) help, take a look at https://www.aid4disabled.com/category/opening-doors-for-disabled-people/patricks-blog/fes/
I miss driving, double vision and poor peripheral vision put paid to that luxury.
I think you are also suffering the double whammy, just have to grin through gritted teeth.
Look out for the CHARIOT-MS trial starting next year