April 29, 2017

Sexual dysfunction, anorgasmia, and missing the boat entirely

You have got to love a disease that gradually takes away all your fun. It's a darn good thing we MSers have a sense of humour, or we'd give up in despair.

So you've lost the pleasure of a long hike in the mountains, or the joy of marshmallowing in hot tubs. You can't even sit long without cramping and you love a good drink but hate the subsequent smell of pee as your bladder misbehaves.

Coffee may be your best friend when at home, and your enemy when out, unless you locate yourself next to a bathroom. Your vision - well, we won't go there as I am terminally depressed about mine.

I used to joke about my fatigue and dating - that I'd go out on a date and be overwhelmed with making conversation, so I'd bring the fellow home, and then I'd be so tired I had to lie down. Somehow the guys ALWAYS got the wrong impression...

But now even that sinful pleasure has left the building. Sex can be exhausting, and overwhelming to sensations. One of my more perceptive dates (god love his furry little hide) noticed that I was in pain after sex if I didn't orgasm. (Note: no one else has ever seemed to notice or care - and of course I am battling exhaustion so don't demand as I should)

But that isn't often easy for we MSers, either. Not only are our sensations all over the place, missing, or twisted, but we don't get to the end point as often as we'd like. I liken it to lighting a firecracker and then having it just burn down, with no explosion. The firecracker is burned out, but still full of unexpended gunpowder, and sparks that fire in places they shouldn't.

Tuppy Owens, founder of the Outsiders Club in the UK, is a proponent of sexual workers being able to help those of us with handicaps in this area. These sex workers are not prostitutes but essentially perform a similar service, spending time in a sexual way with disabled people. Unfortunately, this service is not available in Canada - it's still illegal to purchase these kinds of services, no matter the medical need. I suspect this is because we are still under the conservative thinking that sex is not necessary for survival or health. And/or that disabled people wanting sex is just creepy. I think that is wrong-headed, discriminatory, and hurtful.

I know people who have lost "normal" sensations for whom touching an ear can be thrilling. Other more intimate touches may 'work' after the body is turned on with focus elsewhere.

But what about those who are immobilized, who can't share physical sensations with their partners, who don't know how to please each other in a changed situation?

So that's why I'm working on my book. It's not that I live for sex or are terribly focused on it - it's that I know what it's like to lose a bit of it, and I know how it affects me. So few people with disabilities get touched in any other than a helper way. It's wrong. Touch is important to everyone, disabled or not...and sexual or not.

So I toil away, with my  unhelpful MS brain dragging behind my wishes to get it complete.

In the meantime, I've found a site for people with spinal cord injuries (which we often are - I find it helpful to think of MS as acquired brain damage and spinal cord injury) that provides information about many aspects of intimacy with this condition. Please visit and tell me what you think. Is it enough to be told these things, or do you wish for access to sexual surrogates (not me, I hasten to add) here in Canada? And why is it that all of these sites focus almost exclusively on male erection and ejaculation and so little on women, other than mentioning lubrication? Sheesh. Apparently we are again simple receptacles.

Here it is, from Vancouver, of course, from their spinal cord program: http://scisexualhealth.ca/sexuality-201-sci/

They also have a lovely booklet that talks about devices that can be used for different abilities. Once again, there is a greater focus on aids to men, but the information is adaptable:
Pleasurable: Sexual Device Manual for People with Disabilities
What I like about this one is that it breaks down toys by where you need help (hand strength, positioning, etc) and includes a section on devices that can be applied by caregivers and left in place while you have some privacy...

 'There's nothing you can't do if you set your mind to it. Nothing is impossible." Rick Hansen

Have a look, have fun, and let me know what you think!

No comments: