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!
A blog about living with MS. Why Mad Sow? In homage to Denny Crane, on the TV program Boston Legal. Every time he forgot something, he'd point to his head and say "Mad Cow." I refer to my MS, primarily a cognitive thing at present, as my Mad Sow.
Showing posts with label relapse. Show all posts
Showing posts with label relapse. Show all posts
July 15, 2012
September 14, 2010
Crashing
I feel like an ant who comes across an ant lion trap.
For the last few weeks I've been feeling fine. No real signs of the Mad Sow, exercising like a crazy thing, doing aerobics and strengthening and able to walk and hike and carry heavy things and balance and move and filled with energy and light. Carrying and toting and sending kids off with furniture and stuff I helped load into vans, helped take off vans. I am busy with my daily endeavours, running here and there and doing important ant-like activities. I'm cheerful, glowing, stimulated and stimulating.
Suddenly I notice the sands slipping around me. It becomes harder to exercise - my balance is off - I start to risk falling as I step into aerobics. I find volunteer things seem too difficult to continue with -my brain won't take on new information. I stop eating so healthily because it's too tiring to even think of food preparation. I get tireder.
Last night, needle sharp pains start in my eyes. I drive my car against the side of a building when I do a drive-through for coffee. I go out for lunch and am overwhelmed with the noise and chatter and can't quite make my head work properly. After lunch, I am entirely wiped out, stagger home and crash into bed, too exhausted to move, lying flat and unconscious for two full hours. Now I'm awake, but shivering like I have the flu. I am slipping down, like the ant in an ant lion den, grains of sand slipping under my feet.
Like the ant, I'm going to pretend the jaws aren't at the bottom of the hill. I'm going to keep scraping at the sand grains, hoping to pull myself out of the trap. I'm going to rest tonight, eat healthy things, look after myself with green tea and cuddly blankets and send myself back to bed early. And hope, hope, hope the edge of the pit is closer than it looks.
But there is something nasty waiting at the bottom of the pit.
I like the healthy ant me. I don't want the illness to take me again. I don't. I don't.
For the last few weeks I've been feeling fine. No real signs of the Mad Sow, exercising like a crazy thing, doing aerobics and strengthening and able to walk and hike and carry heavy things and balance and move and filled with energy and light. Carrying and toting and sending kids off with furniture and stuff I helped load into vans, helped take off vans. I am busy with my daily endeavours, running here and there and doing important ant-like activities. I'm cheerful, glowing, stimulated and stimulating.
Suddenly I notice the sands slipping around me. It becomes harder to exercise - my balance is off - I start to risk falling as I step into aerobics. I find volunteer things seem too difficult to continue with -my brain won't take on new information. I stop eating so healthily because it's too tiring to even think of food preparation. I get tireder.Last night, needle sharp pains start in my eyes. I drive my car against the side of a building when I do a drive-through for coffee. I go out for lunch and am overwhelmed with the noise and chatter and can't quite make my head work properly. After lunch, I am entirely wiped out, stagger home and crash into bed, too exhausted to move, lying flat and unconscious for two full hours. Now I'm awake, but shivering like I have the flu. I am slipping down, like the ant in an ant lion den, grains of sand slipping under my feet.
Like the ant, I'm going to pretend the jaws aren't at the bottom of the hill. I'm going to keep scraping at the sand grains, hoping to pull myself out of the trap. I'm going to rest tonight, eat healthy things, look after myself with green tea and cuddly blankets and send myself back to bed early. And hope, hope, hope the edge of the pit is closer than it looks.
But there is something nasty waiting at the bottom of the pit.
I like the healthy ant me. I don't want the illness to take me again. I don't. I don't.
February 6, 2009
Clearing timber

My brain is clearing and laws above, I am less tired. Perhaps, perhaps, my flare up is over. It feels like driving along a highway and seeing a clearing through a forest to the side - it flickers into your view first; you doubt it. When you pass it again, you are a little more certain that it is there, and eventually it becomes clearer and clearer.
The light starts to filter through the trees, and eventually you can see each individual plant, leaf, animal.
Feeling energy return is so encouraging. I never thought it would be so.
January 28, 2009
Scooped out

I feel scooped out, scraped clean along my husk like a wedge of cantaloupe. The blanket I'm under is wrapped around me, but I only feel one section of my body, an area under my breast on the left hand side. The rest of my body feels absent, air-like, weightless, sensation-less.
My face is gone, one sliver left, around my cheek. The rest has no weight, no form, no edge. My legs end in nothingness, my arms sense nothing below the elbow.
I feel my consciousness hanging loose, like a low-lying cloud, suspended in a transparent framework without form.
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