The piece below was written in 2016, which was pretty much when I’d accepted that I had indeed progressed to the Secondary Progressive stage of MS. All in all, another snippet of my life with MS … perhaps your experience of MS has been similar?
“In 1998 after many medical exams resulting from an episode of weakness in my legs the year before, I was diagnosed with Multiple Sclerosis. By the time of diagnosis the weakness had gone and everything seemed back to normal.
I didn’t know anyone with MS, certainly no-one in my family had ever had it – so the MS diagnosis came completely without warning, totally unexpected.
I don’t know what I did expect, probably just a prescription and a pat on the head – but I do know I sure didn’t expect to be handed an incurable condition.
I know now that Multiple Sclerosis is an (awful) progressive and incurable (to boot) disease of the Central Nervous System.
While the weakness disappeared quickly and the disease seemed to have little impact for quite some time, I have learnt how devious MS is – it gives you a little knock every now and then, and you think it’s not that bad really, until all those little knocks develop into something much bigger and you realise that this evil thing has been festering in your Central Nervous System just waiting til you’re weak enough for it to attack.
And so, in 2016 I’ve definitely moved on to Secondary Progressive Multiple Sclerosis, which in simple speak is the second stage, and where many people land after around 15 years. With MS, you never know what tomorrow will bring, but you do know that it won’t end up being good.
These days, while I’m determined to keep walking I often need the aid of a walking stick or walker (or the arm of an innocent bystander) to help me get around.
Now. Independence is truly a hard habit to break – and these days that’s got to be incredibly frustrating for my family, and dangerous for anyone who happens to be in my way! Because (perhaps foolishly) I’m struggling to hold on to my independence. Often I don’t walk too well and it’s glaringly obvious, but even so I simply can’t bring myself to ask for help – even on my ‘bad days’ when I know that without help I’m bound to fall, trip or injure myself in some hideously embarrassing way. I like to think of it as being brave, you’d probably have a different word for it.”
Soon after writing the piece above I was to investigate HSCT, I felt that I was losing my mobility week by week and knew that the drugs available weren’t able stop the horrible onslaught. I was dreading the future – if there was the slightest chance, I wanted my life back.