In case you don’t know, 24 to 30 March 2017 is MS Awareness Week. Despite there being an estimated 100,000 of us with MS in the U.K. and 2.5 million worldwide, not enough people know about what it is and what it’s like living with MS.
I hold my hands up, before that fateful day of 15 May 2006 when I was diagnosed, the only thing I knew about MS was that it was a weird disease that meant sometimes people couldn’t walk, but then they recovered and could suddenly walk again.
Wind the clock forward by almost eleven years, and of course I’m a lot more enlightened about the realities of living with MS. In fact, I consider myself a Subject Matter Expert, albeit a reluctant one.
Let’s kick off with a simplified explanation of what MS really is. The most common analogy used is electrical wiring.
The nerves in your brain and spinal cord are sheathed in a substance called myelin. This acts like the insulation on electrical wiring. If that insulation is damaged it slows down the current and can cause a short circuit. In MS, the immune system attacks your own body causing scars or lesions (sclerosis) in the myelin, which disrupts the messages. As the brain and spinal cord control literally everything you do, depending upon where those lesions occur, MS can affect any part of your body. It affects different people in different ways and is utterly unpredictable.
There’s lots of conjecture but no single known cause. Some believe it may be linked to early exposure to the Epstein Barr virus. Lack of Vitamin D is understood to be a causal factor as MS doesn’t tend to occur in the tropics. Scotland has the dubious honour of being the world’s MS hotspot with the highest incidence per capita on the planet, and some experts believe there is a racial link. The neurologist who confirmed my diagnosis actually asked me if I had Scottish heritage. Although it isn’t hereditary in the true sense of the word, if you have a family member with MS the likelihood of you getting it is slightly increased.
It is the most common neurological condition in young adults. Most people are diagnosed between the age of 20 and 40, and it affects three times more women than men.
There is no cure.
For me, the most troublesome and visible issue is my wobbly legs. My brain is urging them to take a simple step, but the wiring malfunctions and the legs stubbornly refuse to shift. I can’t flex my right foot and ankle, which means I often trip over my own toes. The mixed signals buzzing through my wiring cause me odd sensations. The soles of my feet feel like they are permanently on fire, I often think I could walk across red hot coals and not feel it, but they are ice cold to the touch.
At the moment both my legs feel like they are wrapped in tight coils of barbed wire, encased in a compression bandage. Some days they feel heavy, as if they’ve been hollowed out and filled with concrete, and so placing one foot in front of the other becomes a Herculean effort. Other days they’re not painful, but wobbly and prone to simply collapsing beneath me without warning. I get the most excruciating spasms in my legs and sometimes my hands, which take my breath away and bring tears to my eyes.
Add to that fatigue. It’s not just a case of getting tired, it’s a feeling of being overwhelmed. I can only liken this to trying to row a slowly deflating dinghy through white water rapids. You start off hard and fast, but as you are buffeted against the rocks your energy gradually dissipates as the effort to pull the oars through the current and steer a safe passage becomes ever greater, until suddenly you hit a boulder, the dinghy concertinas beneath you and sucks you under the water. Resistance is futile!
It’s the unpredictability which I find most frustrating. Somehow, if I knew what I was going to be facing every day it would be easier to deal with. But when you’re never sure what you’re going to wake up to, you can’t prepare yourself. It’s a bit like dipping in to a bag of Revels – it’s pure chance whether you’ll strike pay dirt and bag the malteser, or have an apocalypse and get the orange cream.
I’m not telling you any of this to elicit your pity. Perish the thought!
I bloody hate having MS, it’s a royal pain the arse and I curse it pretty much every day. But I’ve learnt to live with it. I’m determined to live a full life. Along with lots of help from my MS Team and my friends and family, I’ve adapted the way I do things in order to maintain my independence and have some fun along the way.
In MS Awareness Week it’s our opportunity to let people know that living with MS isn’t always easy. I live in hope that one day a cure will be found or, even better, they pinpoint the cause so it can be prevented.
I suspect neither of these things will happen in my lifetime but it’s our responsibility, as the current generation of MS Warriors, to keep the fight alive.
To find out more about MS please see MS Society U.K.
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