Recently, I have been asked to explain what MS is – but that is really impossible apart from saying it is a neurological illness. I could talk about loss of parts of the myelin sheath but there are others far better qualified to do that. Let me be clear, I only know about MS because I have it; I live with it every day.
Multiple Sclerosis can be a cruel illness. It affects different people in different ways, no two people have exactly the same symptoms and just because you may know someone with MS, please don´t think you can know how another person is affected.
First of all, there are different types of MS – Relapsing Remitting, Primary Progressive and Secondary Progressive – then there are the many and varied parts of the body that can be affected and also the severity of the symptoms that someone with MS can experience.
At the most serious end of the scale, I have met people who need carers to lift them in and out of bed and to take care of their personal needs and others who show no outward physical sign of the illness. They are the ones for whom MS is described as an invisible illness. They might, however, be affected by fatigue, incontinence or other symptoms that can be hidden for the most part.
There are also people with MS who experience cognitive problems and may need help both understanding and communicating.
I consider myself very fortunate indeed. Ok, so not very fortunate to have MS at all but very lucky to only be affected in relatively small ways. My two biggest problems are that I cannot walk more than 10-15 yards without needing to rest or sit down, nor can I stand for more than two minutes or so before sitting on the nearest available step, ledge or whatever. Wheelchairs are used when the need to walk or stand would be beyond my capabilities.
MS generally affects my left side, particularly my left leg, so that I can now only drive an automatic car as my left foot cannot operate a clutch pedal, and my left arm cannot be raised very high at all.
My brain, speech, hearing and sight seem, thankfully, to be unaffected and this blog helps keep me alert and mentally active. Yes, I sometimes can get fatigued if I overdo things – and by that I don’t mean tired but really fatigued – but I am so lucky to not be in constant pain like so many others are.
Yes, I can fall over easily; yes, it frustrates me; yes, I can get annoyed and event upset BUT I can also see the funny side. I often joke about the floor and I being good friends, I can see the funny side and cannot get up until I stop laughing.
It’s good to laugh and to smile, it is good to be happy whatever life brings and that really is what is behind my positive outlook. There are all sorts of things I have done in my life that I can never do again but at least I have done them and don’t regret not having done so. Now, I look at what I can do and live my life to the full – or the fullest I can.
The past is for remembering the good times while forgetting the bad; the present is for doing what can be done; and the future is for anticipation and expectation, not for regret.
Is there anything else that I need? Yes, and I have it – the love and care of the one and only love of my life, my darling sweetheart, my beloved wife, Lisa.