Sex and disability - yes yes yes!

A lovely series about sex and disability - check it out!

http://www.scarleteen.com/article/sexuality/disabled_sex_yes

An excerpt:

There is nothing wrong with disabled sexuality

Disabled sexuality is very stigmatized in many cultures, and there are a lot of reasons why, some of which start with the belief that disabled people are "innocent" and need to be protected from the big bad world. You may have encountered attitudes suggesting that disabled people who have sex are freaky or weird, and that disabled people only have sex when there's a fetish involved. That's not true — lots of disabled people actually have super mundane sex lives, while others are total kinksters, some of whom are even part of the fetish community, but often their fetishes have nothing to do with disability!

Consensual, joyful sexuality isn't wrong or weird or gross or freaky, even if your body doesn't always do what you want it to do or your brain likes to fight you and even if other people want to desexualize you because of your impairment. The only people who should be ashamed of themselves are the ones who think they can dictate what your sexuality looks like because they make assumptions about you on the basis of how your body and brain function.

In fact, there's also something very right about it. Sometimes adaptations that make sex more accessible, fun, and empowering work to your advantage — like being more conscious about communication and taking advantage of props to get comfortable before you get down for sexytimes.

The site talks about many aspects of sexuality, including masturbation and toys, safety and consent, and especially, cognitive issues and sexual relationships.

http://www.scarleteen.com/sex_on_the_brain_sex_and_autism_mental_illness_and_other_cognitive_diversity

It's not specifically about MS, but a lot of the issues could apply. Check it out. It's an easy read, and as far as I can tell, full of good info!

So, how does it feel for those of you who have to deal with a partner with MS?

I'm hard at work on a book about MS and intimate relationships. It's been an interesting process.
I've been to our excellent local sex shop, Venus Envy Halifax, and interviewed the funny, smart and wonderful Kayleigh Trace, who provides sex education through the shop and advocacy everywhere.
I've wandered the aisles of hardware stores, looking for things shy men could pick up to spice up their sex lives. I've done the same at Dollar stores and pet stores, I've cruised so many websites, looking at furniture and various equipment and ideas and such.

I have to say I have NOT gone to porn sites. I personally find porn boring and degrading, so I asked someone else to do that research for me. He's got a background in that stuff, so can judge better. I always find myself wincing or giggling.

I've read every sex and intimacy related book in the Halifax Library system. There are a lot. My favourite is A Tired Woman's Guide to Passionate Sex, by Laurie Mintz, because even the title sounds right.

I've done the same with MS related books. Fewer of them, and more focused on things like taking meds to control pee, or helpful advice like "Talk to your partner". Oh, and full of grim info on what can happen with MS and such as it progresses. Not cheery reading for me.

I even started a survey on Survey monkey about what people wanted to know, about challenges they had, etc. Belatedly, I added a second survey for partners, because I want to know what they want, too. Being as how good relationships often require partners....

But I need more responses. I've had over 100 responses to the MS-ers survey, and I would love to have more to the partner's half. Could I ask you to circulate this to your contacts and partners?

Partner survey

Oh, and another question - regarding illustrations. I don't have the budget to hire actors to pose in sexual positions for me, and trust me you don't want me in the book, so I was going to either use:

a. Wooden dolls
b. Needle felted dolls

to show positioning. What do you think? All comments welcome.
Here's one of my needle felted dolls (dressed) for perspective:

Arggh and Bloody Hell and sex and MS

Okay. A few months ago I pitched a book about MS and intimacy and there was publishers interest in it - and then my co-author dropped out of the project and I was fed up and decided to not write it, for the moment anyway.

And then I saw this today and I am mad again. Once again, the "recommendations" are merely a list of things that go wrong in MS, and the recommendation to "Talk to your loved one".

OF COURSE it is important to talk to your partner (if you have one, which I don't and let me say that dating with MS is another whole ball of wax), but just talking about it won't help the problem. My experience in talking with neurologists and others about this is that they toss blue pills and stuff at men (lest their threatened penises get all worried) but provide nothing in the way of help for women other than a bottle of lube, which, face it, is more about the man than the woman.

Geez.
It's so frustrating! Lately I've gone all completely numb again and I am cheerfully considering a cat as a life partner cos I have no reason to think about anything else, and yet I know there is no one in my health care circle who can help me.

So I'm off to find another co-author and research this myself and then share what I find out. Cos if you're out there with MS and want a little physical affection, you are alone at the moment.

from the inimitable Despair.com

Here's the OH SO HELPFUL article.

Neurologic Impact of Multiple Sclerosis on Sex

Sexual arousal begins in the central nervous system, as the brain sends messages to the sexual organs along the nerve pathway in the spinal cord. MS-related changes to these nerve pathways can directly or indirectly impair sexual functioning. For example, the following symptoms can occur as a direct result of myelin breakdown in the spinal cord or brain:

• Decreased sex drive
• Altered genital sensations (numbness, pain, increased sensitivity)
• Difficulty or inability to maintain erection
• Decreased vaginal lubrication
• Decreased vaginal muscle tone
• Ejaculation difficulty
• Problems having an orgasm

The following symptoms can arise as a consequence of MS physical changes or treatments:

• Fatigue can suppress sexual desire
• Spasticity can interfere with sexual positioning or cause pain
• Sensory changes can make physical contact uncomfortable.
• Pain

Psychological Impact of Multiple Sclerosis on Sex

A loss of interest in sexual contact or intimacy may arise as a result of psychological or social issues associated with multiple sclerosis, such as:

• Depression
• Performance anxiety
• Changes in self-image or body image as a result of disability

What Can Be Done to Improve Sex With Multiple Sclerosis?

Talk to your partner about your sexual issues and multiple sclerosis. The most important way of dealing with sexual difficulties is to discuss your feelings with your loved one. When MS begins affecting your sexual desire, talk to your partner. Confiding in your partner deepens intimacy and may help resolve concerns relating to sexual intimacy.

A Helpful Book

As a youngish and dating woman with MS, one of the things that has filled me with the most despair over the past several years is my loss of sensation in the...ahem...sexual areas. I consulted with my docs, whose recommendation was to place a bag of frozen peas over the...ahem...area in question and that that would help me feel increased sensation.
Well, I dunno about you guys, but frozen anything DOWN there doesn't sound too enchanting for me or the fellah involved. As one friend said, it's like going swimming in the Atlantic Ocean - cold at first, but okay once you're in...
Yikes.
Now, other than developing a jaundiced eye whenever I see a bag of frozen peas in the market, I haven't had much success with that advice. A friend of mine (who works with people with disabilities and their sexual health) and I got to talking. What if we combined the power of her knowledge of everything sexual and battery operated, and my nursing knowledge and the experience of someone living with MS, and we put together a helpful book?
Not a deadly boring one, but a light, useful one, with advice and drawings and some laughter and fun. That. we figured, could be a help to other people like me.
After all, MS is being diagnosed earlier and earlier, and it sounds gruesome to be sentenced to years and years without any idea of how to have a rewarding sex life. We deserve one, no?

But maybe that isn't what's needed. So we thought we'd ask you. In a short little survey, with no chance we can identify you, compiled on machines somewhere in the deep dungeons of the internet, impossible to trace. Well, maybe not completely impossible to trace, but I've got better things to do than find you. There are all those other frozen veggies to experiment with...

Here's the Blurb:

Dorothyanne Brown, a person with MS, nurse, and epidemiologist, and her
writing partner Karen Kalinowski, a Natural Health Consultant and Sex and Kink Awareness Educator, are collaborating to create a resource for people with MS and their partners about sexual intimacy. 

We've created a short survey, ten questions, to get a feeling for what your
needs are as a person with MS or a partner of a person with MS.

The survey is completely anonymous. We have no way to figure out who answers
it, we plan no cross linkage to any database or physician services. 

It will help us create a resource that will be most useful to you. 

Just click on this link and you will be taken to the survey:
http://www.surveymonkey.com/s/LSLN9XN

Please share widely with others with MS or their partners. Help us create a resource that will work for you.
Questions? respond here or email msandintimacy@gmail.com
And thanks!

MS and lust, lethargy and lipgloss

Okay, I'll admit it.  I'm a fifty-one year old who has rediscovered the joys of lust after a long marriage where sex was the only medium used to indicate displeasure (unfortunately, ex didn't get that message). Let's just say it was a bit sparse near the end, say the last five years or so. (or 10)

One of the best best things about leaving my marriage was meeting a lovely man that taught me that it wasn't ME that couldn't respond, didn't like touch, etc.  It was the situation that cooled me off. I was overwhelmed with joy and sensation and still love the guy, years later, though he is no longer part of my life.

So I find it terribly unfair that MS has sucked away my sensations in certain, ahem, key areas. Not that it has slowed me down. I argue to my friends that I am so fatigued from the MS that there comes a point on a date where it is just easier to lie down and do something that doesn't require much chat. It passes the time, remains fun, provides physical activity, I don't have to be witty, and the men seem to like it.

It's a bit dangerous, though, as it becomes my fallback position (as it were) when I am tired at the end of the evening. When I was dating more, I'd go out for dinner, say, go for a walk, wander about, then feel, really, I HAD to lie down right away.  Y'all with MS know this feeling.

The men - well, they were only too happy to keep me company. Add to that my main sensations left are located in my lips, and after a few kisses, well, life became rather scandalous pretty quickly.

But, I reasoned, if I don't use it, I might lose it. And, like eating chocolate when I knew diabetes was pending, I felt I should pack in as much as I could before the boom fell and I wouldn't be able to enjoy it any more. Well, they do say MS impairs some cognitive functions, too...

Alas, even using it hasn't helped me not lose it. MS marches on, and now I am a seriously lascivious woman trapped in a body with seriously impaired sensation. I tried to tell my neuro about it and had to revisit it a lot before he (always he, always he) would listen.  I'll just bet if I'd been a man and told him I couldn't get it up, he'd have been all over it with ideas.  But it remains that women lacking sensation is still deemed rather unimportant, despite so many studies talking about how sexuality is essential for intimate relationships, self-esteem, bonding, etc.

I'm still interested, and thank heavens I am in a relationship now with a kind, loving man who seems willing to explore options, but the fact remains there are times when I can't feel him touch me. And no matter how aroused my mind may be, if I can't sense his touch, my body doesn't respond. It's frustrating. I miss that thrill of neurons firing up and down my spine and tickling my lust centre. I miss the feeling of an aroused body. I miss the increasing heartbeat, the warmth speeding to the skin, the hairs raising. It often doesn't happen, and it's definitely not his fault.

It's tempting to give up, but I've never been a quitter...and I'm not quite ready to retreat to memories of my explorations.
But I've had to give up chocolate.
Unfair.