Somewhere only we know

I've been wondering how to approach this.

This subject our Victorian ancestors might, hilariously, have called horizontal refreshment but one which I like to think needs a bit more maturity and nuance. (Although obviously I am going to use that historical euphemism from now on.)

Yes, it's sex.
But not just sex - sex and disability.
It is, to put it mildly, a complicated mixture:

• the emotions: Am I still attractive? Will anyone still want to sleep with me? What if I do/don't want to do it but my partner does/doesn't?
• the practicalities: Can I still do it? How do I still do it? And even if we're agreed on the cans and hows, what if I am seriously too tired to do it?
• not to mention the stuff you don't initially think about: What if my hands give up halfway through? What if my brain refuses to think sexy thoughts? Not to mention, erm, swallowing difficulties.

Challenging, isn't it? But common. A quick Google indicates that around 50 to 80 per cent of women with MS will experience some degree of sexual symptoms during the course of the disease, along with up to 90 per cent of men.

And bearing in mind MS generally divebombs into peoples' lives in their 20s and 30s – potentially prime sexy time* - and could last for the rest of our lives, what can be done to help?

There's no easy answer, but there are a few handy tips: scheduling sex for when you're least tired (not hugely sexy, admittedly, but practical), trying different positions to avoid physical impacts (take THAT annoying spasms), sex toys (can help with decreased sensation), medication (viagra and synthetic hormones) and being prepared to keep talking and keep trying. The MS Society has some useful thoughts and suggestions.

From a personal point of view, the relapse I experienced after having my daughter successfully knocked out all – and I mean ALL – of the sensation from my waist down. Pretty rubbish.

Initially, however, my main focus was on somehow recovering while also caring for a three-month old who needed a mummy. Any other concerns were taking a bit of a back seat.

But as time went on and sensation didn't seem to be making much of an effort to reappear, hubby and I realised we needed a few frank conversations. And, I think, this is where sex talk (in the medical sense) was really important.

Being able to speak honestly, and with some humour, about what had happened to my body and how it affected us both was really helpful. If there's two of you in bed, then logically there are two sets of feelings to be taken into account. (If there's more than two, the same applies, but you might just need to organise a conference call.)

Talking is always good, it helps rebuild and reconnect after damage. Talking through your feelings about sex – the worries, the fears, the changing perspective - is not necessarily easy, but my view has always been that if you're willing to share your body with someone for extended periods of time, you should also be willing to share your mind.

In my case, while some parts of me took a substantial amount of time to recover, fortunately others didn't take quite as long.

And while the physical mending was a huge relief, it was actually the emotional communication that really helped us through that particularly intimate relapse.

How refreshing.

:: Somewhere only we know by Keane

*Although I'm sure a few older readers will disagree – and I hope they do, it means I will have something to look forward to.