Tag Archives: primary progressive MS

So This Is Christmas …

We are recovering – The Teenager from being attacked, my much lesser incident of a twisted ankle.

Damned foot-drop.

I remember lying at the back of the works van, having fallen and thumped to the ground, thinking, ‘this is just not happening’. But it did.

Do you remember those falls you had as a kid? That sickening thud of the pavement rushing to meet your head? That’s what foot-drop is like. Of course, it’s ‘curable’, if you concentrate on every single step you take and will your feet to rise to the occasion.

But who has time for that? So I fall. I trip. I can trip over dust, cables, pavements.

And it brings me up short, and maybe not in the way you might think.

Our dad died forty years ago this year from complications arising from his MS; I am one of four siblings he left behind.

When he died in 1978, nothing was available to alleviate his condition; he was sent home after brutal tests, with only a walking stick and a diagnosis of ‘crippling paralysis’, now known as Primary Progressive MS.

After eight years, he died at the age of 35, a husk of the brilliant man and scholar he once was.

I am lucky. I was born into an age of MRI’s, MS nurses, disease-modifying therapies, which is why I didn’t hesitate to accept the one that would allow me to be well enough to be around long enough to see The Teenager in to University.

So when I come up against seemingly impossible situations, such as The Teenager calling me in work saying, ‘Don’t worry, but …’, I am perhaps more sanguine than most parents.

He is alive, well, and healthy. It is him who called me, not a consultant, a police officer or an anonymous University staff member. I was only grateful that I could speak directly to him, despite his trauma.

Christmas is always a tough time for families. The Teenager will be home in a week, and the washing machine will be pushed to its limit. The cat will be giddy with delight and I will be over the moon to have him back in our little cottage.

However, gratitude is the most important emotion; gratitude that I can greet him at the door, welcome him in and be the same person (plus limp) he last saw at University. His bed is ready with fresh linen, the fridge will be stocked and we’ll have a great catch up.

It’s precious. I’ll never lose sight of what we could have lost.

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A Back-Handed Compliment

But You Look So Well‘But you look so well.’ A loaded sentence most of us with MS hear at some point.

I hear it a lot, along with ‘but I heard you were ill’. The complex nature of my, so far, mostly hidden illness.

What they don’t see is the work that goes on behind the scenes. Yes, I look fine for that hour or so. No, they don’t see me taking ages to get ready or lying on the sofa afterwards. Or the long evenings spent alone at home, too tired to go out with friends.

I’m proud that I still want to look my best, but not fitting the physical perception of the ‘sick role’ can distort the view people have of me. I’m used to it, or so I thought until Saturday.

I was at an MS meeting. At the end of it, we gathered around in groups for a coffee. I was talking to a friend when suddenly a woman I had never seen before pushed in and without any greeting, asked if I had MS.

‘Um, yes?’

She looked me up and down before saying, ‘but you look so well.’

It was the ‘but’ that threw me. She didn’t say, ‘great to see you looking so well’ or ask how long I had been diagnosed. I felt immediately guilty, as if I had to justify myself. I had always thought that I was ‘safe’ with other people with MS – no need to explain nerve pain, fatigue or the general fed-upness that goes with MS.

I told her that I had been having relapse after relapse and had been offered Campath (Alemtuzumab) treatment and touch wood, no relapses since last May.

‘Relapses? Hah. I never had any’ she said.

‘Oh. Is that good?’

‘No! I’ve just gone downhill. I have primary progressive MS. We don’t have any miracle cures. Nothing can be done for us, all the research, all the meds go on the ones with relapsing remitting MS.’

Awkward. What do you say to that? I made my excuses and wandered away. I wasn’t in the mood to be challenged. I went home deflated and upset. I did see it from her viewpoint, but it was the abruptness of the exchange that threw me. I don’t want to justify myself to other people with MS. I have to do it enough to everyone else.

I went home, dragged my duvet onto the sofa and fell asleep. 4pm and the day was over.

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