The first cut is the deepest

It's Hallowe'en - what better way to celebrate the night of heebie-jeebies than by dwelling on my own unnerving condition?

I've spent some time today wondering at which point over the past near-15 years I have felt most scared by my MS.

• That very first hospital admission?
• Hearing the diagnosis?
• Telling my partner he could leave if he wanted to?*
• During the decisions we made about having children?
• Leaving work and feeling useless? Restarting and struggling again?
• Struggling with poor balance, pain and gradual cognitive destruction?
• Realising that my eyesight really wasn't going to improve?
• Wondering if this moment is as well as I'm ever going to be again?

I honestly don't know. And the sad likelihood is, unless some sort of miracle cure is discovered, the most frightening is probably yet to come.

Of course, I'm fully aware this is no way to live a life - trembling in the face of what-ifs - but sometimes these thoughts are completely unavoidable.

And maybe they deserve some consideration.

Being diagnosed with an incurable, progressive disease is frightening. There's no getting away from that.

Once we're diagnosed we realise that, to a greater or lesser extent, fear is a part of our lives now. Fear of the unknown, fear of the known, fear of the damage, fear of medication, fear of progression and fear for our future.

I think we need the chance to acknowledge this dread now and again; to talk about our what scares us and rail tearfully/angrily/gin-sodden against the unfairness and randomness of a disease that was absolutely not our fault.

Sometimes we need these times of overwhelming dark to be able to fully appreciate our light: to see how remarkably we're coping, how strong we became when it was our only option and how very proud we should be of the fact that we get up every single day and carry on.

Perhaps if MS could see what it was up against, it might play a few less tricks. 

:: The first cut is the deepest by Cat Stevens

* He didn't. We got married.