Founder’s Blog #10

Hello everybody,

I have had the most physically challenging month since I have been diagnosed with Secondary Progressive MS, and that of course leads to the battles of the mind. I have the combination of age, hormones and MS to blame for pain, sleeplessness, forgetfulness, etc., perhaps symptoms most people my age seem to get at some point, it’s never easy to tell with these things.

The difference for me is that I know what’s coming and there are plenty of reminders that this disease is progressing; I sometimes wake up in the night with horrendous cramp in my toes that often lasts for a few hours. I occasionally have a bizarre inability to sit or bend down after a walk because my spine feels like it is compacting and my hip has lost the ability to rotate properly. I have gotten used to the common ‘shin splints’ feeling, the patience needed to get my balance again after standing up from a long time sitting still. These things take my MS to a very real place. All these hurdles are becoming relatively normal for me, yet relatively unnoticeable to all. Sportin MS is here to give a voice for those diagnosed, raise awareness, help bring MS more in to the mainstream and in doing so, raise funds for vital research, for treatments, support, therapy and hopefully a cure in the future.

When my children ask me to play garden tennis or cricket, I’m first in. I initiate an afternoon walk. Every morning I go for a run which has now become a walk with a bit of running (I’m getting old). I still dance in my kitchen every time I cook dinner… My point is, to most people, you wouldn’t guess that there’s a problem but we need to be aware of the humongous psychological despair that all of the above can bring with it. I am riddled with fear – fear of what is happening, but mostly – the waiting for what is to come. The worst thing about MS is that there is no plan, no set route, no time scale and no references for consultation, as each individual suffers and progresses completely differently. So, you feel like you are on your own. In the meantime, we guess, we push our bodies, we get frustrated at the incompetence of our limbs, our bladders and our bowels and lose all positivity when we are unable to perform the smallest of tasks – like getting the bloody hover upstairs.

Sportin MS is striving to contribute to a support system for both the mental and physical challenges for MS patients. We are negotiating with the powers-that-be to help deal with this overwhelming fear and encourage positivity so that the body can have the courage to remain agile for as long as possible. More than ever, the time is coming for your fantastic support to take our aspirations to where this help can happen. I look forward to sharing that with you as each stage is reached in achieving this goal. Thank you – always.

Lots of love,
Antoinette

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