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:

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

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.

Love, romance, and the eternal doubt of life with MS

It's all very twee, isn't it? The whole vision of love and romance and walking through a landscape filled with hearts and flowers, babbling brooks, sunlight, and sweetly chirping birdies to add music....

Well, I've always had a hard time believing all that - typical first love broke my heart thing. And, as an overweight, very short gal, I've spent quite a bit of my life feeling unloveable. Having MS for years and not knowing it made me feel even more unworthy - tired all the time, cranky when I was too tired to think, numbing and filled with pain in alternates.

Add to that the full MS cover. Now it becomes almost impossible to think that anyone would ever want to be around me for more than a short time, for more than a quick roll in the hay, for more than the good times. Who in this big world would be willing to take on a moody with MS, falling apart lass, who has difficulty with everyday tasks and regularly forgets things on the stove? Who will probably get worse and worse and worse?

I mean, I can be brazen and tough it out, tell myself I am good on my own, be more fiercely independent than ever. I can wear my push up bras and mock men for their attention to silly things such as breasts, I can educate myself and fool myself that I am perhaps alone because I am too smart, I can push away everyone who tries to get through the armour.

I do all of this, deny my need for support, contact, affection, touch, love.

Because I know there are storm clouds beyond the sunny meadow, and I don't want to inflict those on anyone. Not even a dog.

It makes me unwilling to trust in love, to let myself fall into it, to accept it when given. Like the rest of my life, which has become undependable, I figure it's a wobbly thing, given to short-circuiting like my fraying nerves. And who knows? Perhaps I have a lesion on my "accepting love" gyrus or something.

It would take a very patient, persistent, and kind man to lead me down the meadow past the hearts. I'm balky.

I may, may have found just such a man. Fearfully, I take a step into the warmth...

Try a little tenderness....

I'm a single woman, divorced for the last couple of years....When I first received my diagnosis one of the thoughts that ran through my head was: "No one will want me now....I will always be alone..." I thought idly of surfing MS websites, checking for hot dates who also had MS, thinking they at least would accept the unpredictable bundle of neurons I was becoming.
One of my friends immediately started trying to caregive, intruding into my life as a person with MS, and I realized that I couldn't bear that, that this was my disease to live through. In my mind, I decided to mentally shut everyone out, plan to be alone during the worst bits, hide from friends until I felt healed, only show the strong side of me, joke about everything so no one would seriously worry about me. I didn't want people to use this to take power over me.
Lately, though, people have been lovely to me. They reach out to me, they treat me kindly. My little town has taken me under it's communal wing, and I can feel them wanting me to stay here, wishing me well.
One person has diligently warmed me, allowing me to open out and trust a bit in a relationship, carefully, always afraid he will hurt me or abandon me as has happened before with others. He's persistent, and despite my sending him away, he has waited patiently for me. He knows what to expect, but he seems to care for me anyway.
His tenderness awes me. I am touched, deeply.
While I don't know how things will go in the long term for me and my friend, all I can say is that I wish for everyone out there that has MS to find someone who sees the you outside the disease, willingly accomodates your limitations, and brings you close.
And for those of you who haven't found them yet, here is a tight, warm hug from me, from my healing heart.