Whatever do you mean?

  

Ah yes. MS and relationships. I'm working on a book about how to liven up your intimate relationships even with MS and the research is mind-blowing. Well, it can be fun, too, but I digress...

Like, for example - did you know that one of the cognitive changes that comes with MS is the gradually increasing social disorder of not being able to read other's emotions/faces, and not being able to express our own?

“What may be overlooked in relating to and caring for patients with multiple sclerosis is the fact that the neurodegenerative disease sometimes affects a person’s ability to properly convey and perceive emotion. According to the National Multiple Sclerosis Society (NMSS), while there is not enough conclusive evidence to suggest the disease directly affects emotion, it is important to consider that MS patients may either be struggling to cope with the disease, or are physiologically affected by it, making perception and expression beyond their control.

Aside from the loss of the ability to recognize the appropriate emotion behind certain expressions, a new study from the International School of Advanced Studies (Scuola Internazionale Superiore di Studi Avanzati or SISSA) in Italy now suggests MS patients have an increased difficulty interpreting emotions expressed through one’s posture, countenance, and comportment. Additionally, the study suggests these issues are caused by the patient’s inability to identify his or her own emotions, which is a phenomenon termed as alexithymia, and is observed in some MS patients.”^⁠1 (Emphasis mine)

¹ http://multiplesclerosisnewstoday.com/2014/11/12/inability-to-recognize-and-convey-emotion-an-effect-of-ms/ Accessed Mar 30, 2016

Alexithymia. A new multi-syllabic word to whisper in our partner's ear, late at night.

"I'm so sorry, darling, I didn't realize you were upset. You see, I have alexithymia..."

I'm so sure that will be the curative word...relationship fixed. "Oh, I see, you can't express or understand expressed emotion. So how SHOULD I reach you? Flash cards?"

Maybe flash cards or one of those "Daily Mood" flipcharts would be a good idea if only to help identify our feelings to ourselves. Because, apparently we can lose that, too.

Definition: Alexithymia

Alexithymia is defined as a personality construct characterized by the sub-clinical inability to identify and describe emotions in the self. The core characteristics of alexithymia are marked dysfunction in emotional awareness, social attachment, and interpersonal relating. Furthermore, individuals suffering from alexithymia also have difficulty in distinguishing and appreciating the emotions of others, which is thought to lead to un-empathic and ineffective emotional responding...

The treatment options for alexithymia are often times very different from typical counseling or talk therapy. For people living with alexithymia, a mental health professional will often concentrate on building a foundation of naming emotions and appreciating a range of feelings. The process will likely include both consideration of the experiences of other people and self-reflection. Even though some people with this emotional comprehension might sound very basic to others, for a person with alexithymia the process of growing their emotional intelligence and capacity may be difficult. Things such as:

• Group therapy
• Daily journaling
• Skill-based therapy
• Engaging in the creative arts
• Various relaxation techniques
• Reading emotional books or stories
• https://www.disabled-world.com/health/neurology/alexithymia.php, accessed April 2017

Brain injury changes us, no matter how it is caused. The brain injury that comes with MS evolves daily and is still being understood. For the people around us, our emotional winds can blow a bit strongly. And for us, the hurt that we may inadvertently cause adds to our isolation, something all people with chronic disease suffer.

I seriously dislike the word challenge - it seems to mean we can overcome whatever it is. I haven't heard of too many people who overcame brain damage. I think in this case, we could call it a botheration. Annoying, non-fatal, often not big enough to kill us, but certainly big enough to maim some of our closest relationships.

 I suppose it all comes down to communication, understanding, and a fair dose of tolerance. Knowing about it helps. Reading about this was for me a revelation, a light of understanding why I hesitate so much to connect with people, why friendships remain distant, why I can move away from places without a backward glance. My brain doesn't notice the disconnect.

Mind you, I keep hoping I can dig my way out of this particular brain black hole and find a way to care and express my caring. And perhaps, someone like this:

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

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!