Red right hand

Ruddy relapse continueth and for the past couple of weeks my hands have been quite badly affected.

This has happened before and I am hoping against hope that the pathways aren't too damaged to repair to a decent degree.

My hands are both somehow numb AND - when they brush against something (anything) - feel like they are covered in sand.

They are massively uncomfortable - but even more depressing is that the dexterity has gone and they no longer feel under my full control.

I struggle to write, type (thank goodness for autocorrect), cut things, undo things, grab things and hold onto things.

And I don't like it. I don't like it one bit.

Stuff that's hard to do with MS hands:

• type without fcuk-ups
• apply eyeliner successfully
• deal with laces, zips, buttons, hooks
• negotiate tampons without causing a Kill Bill-style bloodbath
• stroke my daughter's hair while she sleeps

Find exercises to help arms and hands from the MS Trust.


:: Red right hand by Nick Cave and the Bad Seeds

Warm wet circles

Ick. Ick. Icky. Ick.

So, the sensory relapse continues and in an exciting change (deterioration) from last week has decided to throw a new sensation into the mix.

Honestly, MS, too kind.

Anyway, this is a new - and unwelcome - one on me - I now feel as if I'm wearing damp clothes. ALL THE TIME.

Good Lord, it's unpleasant.

I know I'm not actually wearing damp clothes, despite the End of Days style deluges we've been getting.

I know this because my daughter keeps checking for me. What with that and the prodding duty she's on to see what feeling has returned (none, thus far) and the hugging to try and over-rule the MS hug (sometimes works), it's been a particularly weird mother-daughter bonding relapse.

What amazes me is the amount of peculiar sensations that our bodies can produce. Who knew we were capable of burning or buzzing or sensing the soggy?

Presumably we could all experience these oddities - it just takes a breezeblock to the central nervous system to release them.

I'm all for expanding my emotional horizons, but there are some feelings that I can live without.

:: Warm wet circles by Marillion

A little time

Well-meaning friend: Feeling any better?

Me: Thanks for asking but no, no I'm not. And it'll be a while before I am.

Well-meaning friend: Oh right, another week or so?

Me: Erm, unfortunately no, it'll be more like another few months.

Well-meaning friend: Oh right. It's just that it's been about a month already. You must feel slightly better.

Me: No. Sorry. (Why am I apologising?)

Well-meaning friend: So you still can't feel your fingers?

Me: No.

Well-meaning friend: Stomach?

Me: No.

Well-meaning friend: Legs?

Me: No.

Well-meaning friend: Oh. Wow. That's pretty unbelievable.

Me: No.

Well-meaning friend: But you don't look any different. I thought I might be able to see something.

Me: Nope. Just me.

Well-meaning friend: Wow. What can I do?

Me: Nothing really, but thanks very much for asking.

Well-meaning friend: Okay, if you're sure. Let me know though.

Me: I will, thanks very much.

Well-meaning friend: No probs. I'll text you in a couple of days, see if you're feeling any better.

Me:

:: A little time by The Beautiful South

(Un)Comfortably numb

So the pins and needles of two weeks ago have transformed into a full-blown sensory relapse. Oh joy.

I have had ongoing sensory issues ever since my first relapse 15 years ago, but not quite to the extent that they are at currently.

They are overwhelming, frightening and, like all invisible MS symptoms, a tricky beast to explain.

I don't look any different on the outside. There's no hazard lights marking out where the problems are. There's no helpful tattoos illustrating where the damage has been done. There's no real adequate way of explaining what's going on because it all sounds so far fetched.

Numbness, pins and needles and intense pressure are about as close as you might get to help non-MSers understand, but they don't really give the full picture.

It's so hard to explain the panic of being able to touch your own body but not feel anything but the cascade of internal pins and needles that pressing on your stomach has released in your fingertips.

Or the girdle-like tightness of the MS hug. A skin-tight corset that you can't remove at the end of the day.

Or the pulled skin sunburn-esque sensation stretching out over fingers and palms.

In addition, as I've been damaged along these pathways before, I don't know how well I can repair again.

But if 15 years with MS has taught me anything, it's to be patient.

It's early days in the relapse, so there's nothing for me to do now but wait and hope that I can get some sense of my body back.


As a reference point, here's a highly scientific diagram of my current status:

The MS Society has produced a useful booklet about pain and unpleasant sensations. You can download it here.

:: Comfortably numb by Pink Floyd