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:

Numbness and by the way, will I notice sex ever again?

I'm sending out my book proposal for the MS and Intimacy book sometime next week. It's sort of funny, because right now the only intimacy I have is with my new adopted cat, who comes over and kneads me.

But all I can think of is the line from "The Truth about Cats and Dogs", where the vet is taking calls from the public on her radio show, and this guy calls in and says his cat likes to lick him and keeps doing it and he seems to have developed a rash (location unspecified). The vet, Janeane Garofalo, says, "You can love your pets, but remember you can't LOVE your pets."

Still, it's nice to be kneaded. As it were.

Meanwhile, numbness continues. If I weren't such a chicken I'd attempt cutting just to see if I'd feel that but heck, I'm in enough pain already, why go ask for more? Besides, the blood is messy.

I remember from my past intimate moments oh so very long ago that one of the fun things was that since so much of my body was numb, the spots that felt, felt EXTRA. It was like a treasure hunt. Nothing, nothing, nothing, WOW, nothing…Fun for play and exploration with a patient partner.

I also remember the summation principle -where the more I was touched, the more synapses would light up so that I could actually feel things, even if they didn't feel where they were touched, but elsewhere, so to speak. Like someone would stroke my arm and I'd feel that in my knees or something. Still felt wonderful. It was as if my partner was adding current to my fried wiring and after a certain point, the lights turned on.

Sometimes it's alarming for my partner, I think. There I am, la di da, yes this is nice, whatever. Did I shut off the stove? And then, kerplowie. Not necessarily THAT kerplowie, but fun anyway.

Anyway, since the cat, handsome as he is, does not have that effect, I'll simply have to remember what it was like for my book.

Memories are nice, too. mmmm.

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.

Need your input for MS and Intimacy book!

 While ago I posted a link to the Survey Monkey survey I'd put together for the book I'm writing with Karen Kalinowski about MS and Intimacy.

In case you don't know, I'm a former registered nurse, epidemiologist and freelance writer, living with MS. Karen is a Sex and Kink educator who has worked extensively with people living with disabilities.

A good many answered, but more input is needed. Some of the comments said that there didn't seem to be much focus on partners' opinions, so I've created a secondary survey for partners.

Both surveys are COMPLETELY ANONYMOUS. There is no was I could ever link your response to you, your location, anything about you. The online survey people can't do that either.

It does allow me to compile responses and gather information that will guide the book's creation. Won't you please help me put together a resource that will help you and your partner as you live with MS?

The surveys are below.
Only ten quick questions each...

Persons with MS: http://www.surveymonkey.com/s/LSLN9XN

Partners of persons with MS: http://www.surveymonkey.com/s/NCTJSLM