Jacqueline sits at her laptop, smiling at the camera. She's wearing and MS Society t-shirt

Making the invisible visible during lockdown

"But you look so well!" If I could have had a pound every time I used to hear that said, the MS Society collecting bucket would be overflowing.

Outward appearances can be deceptive. Even more so now, when all you see of friends and loved ones is the scaled down version on the Zoom or Houseparty screen.

I know only too well about the invisible, but visible to me, symptoms of MS from which I suffer. Here are two of them.

My experience of trigeminal neuralgia

No one sees the pain that ravages through my face, not all the time, but a little more often than I would like.

TriGemN, as I call it for short, is a sudden, severe and sharp nerve pain that shoots down the side of my face. It feels like having an electric shock in the jaw, teeth and gums. There is no other pain like it and when it hits, it leaves me floored, literally.

It usually happens in short, unpredictable attacks and hits my upper right jaw, lasting for about two minutes, every three to four hours.

You think it’s over and it hits you again

It occurs for up to 10 days and nights at a time and then the attacks stop as soon as they start.

Then nothing, perhaps for weeks, even months although I've noticed in the past year or so that the periods of relapse are getting gradually shorter.

You get lulled into a false sense of safety and think it’s over. Then, out of nowhere when you least expect it, WHAM! It hits you again. There is no escape.

Medications can help manage the symptoms, but only to an extent.

Shielding from pain

Only last week I found myself counting the days until the next attack and then guess what? As we tucked into our rationings of Easter fayre, it arrived back with a vengeance.

As the world is absorbed, understandably, by the ravages of the pandemic, I find myself shielding from an insurmountable pain that ravages my very being.

Cog fog – issues with cognition

Perhaps a more common invisible symptom known to many with MS is having trouble with memory and thinking. ‘Cog fog’ as it’s often called. Again, there’s nothing to be seen.

It’s easy to disguise, I did for several years before finally I had to give up work. I just thought I was getting more stupid as I struggled with even the easiest of tasks like shopping online or booking travel.

It started at work with a gradual loss of understanding of simple instructions, reading basic documents, drafting correspondence. Increasingly I could no longer process the information given let alone decipher and make any decisions with it.

Feeling less competent

At first, it’s easy to blame getting older, that time of life for us over 50 something ladies. “Oh that happens to me all the time,” I hear my friends lament. Only I could tell it was more than just the menopause.

The more it gnaws, the less competent I feel. My husband has learnt to read the signals. As soon as he sees me fumbling with a train booking, or the grocery shop, he steps in gently to help or sits reassuringly at my side watching every single click.

There have been far too many financial mistakes made by the click of just one button!

My fears for the future

It’s the simple things that I’ve realised now are becoming very ‘un-simple’ to me. My greatest fear is what can I do about it? Do I struggle and fight through every step and decision I take, desperately trying to hold on to ‘normality’ or do I gently hand over everything to ‘safer’ hands?

It’s like my heart and mind is being ripped out of my body. At what point do I just hand everything, so I’m stripped to the core and I am just a shell of my former self.

If anything in Jacqueline's blog has affected you our MS Helpline is here with emotional support and information for everyone living with MS. The lines are open Monday to Friday, 9am to 7pm except bank holiday. Call 0808 800 8000 or email helpline@mssociety.org.uk

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