Monday, October 21, 2013

Sexapalooza Baby!

I'll never forget the first time my husband and I made love during one of my MS relapses (the first really significant one that involved a sensation of numbness from my neck down). Although he was gentle and sensitive to the fact that I wasn't feeling entirely well, it was a frightening and upsetting experience.

It was very scary because I couldn't feel what I normally feel during a sexual encounter. It was kind of like making love wearing a knit body suit. Every sensation seemed muffled and indistinct and it took much longer than usual for me to achieve orgasm.

When you have relapsing/remitting MS, you need to have faith that your body will recover eventually. But one never knows if the body will recover fully or incompletely.

I've been lucky so far. My body has now almost recovered fully from three separate relapses. I do have some residual symptoms, but they are very mild and serve to remind me that I do have a chronic disease lurking in the background.

But there will always be a voice in my head, when a relapse is at its severest, that says, what if I don't recover? What if my MS has now changed to Secondary Progressive and I will either stay like this or keep getting worse? You have to tell that voice to shut up. But let me tell you, when a relapse affects sexual performance, it is hard not to be a little bit scared.

This may explain why I have consciously and boldly embraced my sexuality, without fear, ever since that first big relapse of five years ago. I received the gift of a fully functioning body back from the brink, and dammit I will not apologize for celebrating what makes me excited, turned on, and able to achieve physical pleasure.

I now have many published works of erotica, either for sale or available for free, that I wrote in the time period after my MS diagnosis. Yes, they are male/male stories, because I have always found the idea of two men being physically intimate together a turn-on, and I've learned that many other women do as well. I also love the idea of being able to turn on a gay man with my writing. I've always loved gay men, and have a slew of close friends who identify as gay or bisexual. Although I identify as straight and I'm married to a wonderful man, I have several Lesbian friends and find many of them very attractive.

Last November, for research purposes, I attended a fisting seminar as part of the Mister Leather Ottawa event. I initially did not realize it would involve an actual demonstration of said activity, which I had seen in videos many times. Because I knew the presenter personally, and he knew that I was there to find out all I could about it, I soon found myself challenged to participate in a "hands on/in" way. To my own surprise I took up this challenge and had one of the most interesting and informative experiences of my life. (A more detailed description can be found at my Author Blog - it remains one of my most popular posts)

Knowing as I did that three months, or three years, or even three weeks down the road, my hands could become completely numb and non-functioning again, I had to take advantage of this opportunity. I wanted to do it, I had the capacity to do it, and it was a safe environment for doing it. I would not let societal prejudices or judgements stop me from participating in something that I may never get the opportunity to experience in such a way again.

Yesterday, I took advantage of a friend's offered free pass to attend the Ottawa Sexapalooza show on Uplands Drive, which is in my neighborhood. My husband and I have attended twice together and find it overpriced and tame for a venue that boasts to be a scintillating journey into the world of sexuality. Unfortunately, it is very much hetero-centred, and geared toward a subset of women who are just branching out of their narrow view of monogamous vanilla sexuality.

But, the kids had been stressing me out and Greg kindly offered to look after them while I went to the show on my own for an hour. Since I had just recently begun to feel better after my latest relapse, it was an opportunity to see a few friends and just get out of the house.

It was fun to see all the sex toys on display, especially the gorgeous tempered glass dildos and plugs (a personal favourite) which come in so many different designs and colours. I do wish the organizers would take a leap and stop dimming the lights and keeping everything so dark and mysterious.

Since my husband and I already have a plethora of toys and accoutrements we hardly ever have time to use, I didn't purchase any. I did buy a fun bag and a couple of necklace pendants. My friends Isaac and Keven were manning the MLO booth so I was able to chat with them for a bit. Eventually I sat down and had a drink and watched the people moving about in the darkness.

I don't think I will go next time, even if I'm offered free admission. It's much more exciting to attend an event like MLO or a Pup Night at CPs, where at least I get to see things further from the mainstream.

It is a great thing to be able to follow one's own desires and take advantage of one's full sexuality, no matter how "out of the norm" it may be as long as it is consensual, people are treated with respect and one engages in risk-aware behaviour. You never know when the ability to do so might be taken away from you.

~ Alison


Thursday, October 17, 2013

Big M, little m...

...what begins with M?

MS and Menopause, M M M.

So...had a nice chat with my doctor today. She doesn't actually think I'm starting Menopause or Peri-Menopause yet, because I'm still having pretty regular periods, and I'm only (!) fourty-four. She thinks the increased premenstrual symptoms I had in August and September were caused by stress from my MS relapse. She might be right because they aren't as bad this month.

So that is good news!

We spoke for a bit about the possibility that menopause, when it does start, might cause more MS problems for me. She said that hormone replacement therapy would be an option, and that it is not as bad as they thought years and years ago. I really don't know if I want to go that route though. But it's not something I have to think about yet, so yay!

I told her that I had started this blog and she thought it was a great idea, to help me manage my emotions and the stress of dealing with this illness. She also printed off a list of community resources/counselling services in case I might need them. She is so awesome!

~ Alison

The Gift of Time

I seriously do not know how parents who both work outside the home full time do it.

I "work" at home, and we still find it incredibly challenging to ensure that our nine-year-old keeps up with all the homework she's getting. Luckily, because she and Graham come home to me after school and not to after school care, I can encourage her to do some of it right away. This has actually happened on several occasions. But even if she doesn't get to it until after supper, because I'm home we are usually done with supper by 5:30 or 6:00 and there is still an hour before bed time rituals begin.

I know that some children are not even picked up from their caregivers until 5:30. Supper in homes where both parents have outside jobs may not even get onto the table until 6:30 or 7:00.

If my daughter is too tired to finish her homework after supper or, as on Tuesday evenings, has an outside activity to attend (Hip Hop Dance), she is lucky to have me here in the morning to make sure she sits down and completes what she didn't finish the night before. Quite often she breezes through homework in the morning that she was struggling with the evening before.


We are so lucky to have the luxury of time. Although it is not an ideal situation financially (!), the fact that my illness makes working full time outside the home a virtual impossibility and definitely a bad idea, may just be a blessing for our family. True, we only have one car and will probably never be able to afford a bigger house, but we have enough to live comfortably. I am here with a listening ear when the kids come home from school, and I walk them to school in the mornings.

My husband benefits from this situation as well. We don't have any childcare expenses which, even for after-school care, can be substantial, and he doesn't have to worry about taking time off when they are sick, because I'm here to look after them.

Although I'm sure there will be things that the kids will regret about the fact that they had a mom struggling with MS, at least it has given me the opportunity to be present for them in a way that alot of my friends can't be. No doubt they will be sick of me by high school, but I will still be here, keeping an eye on them, checking on homework, making dumb jokes and cooking chicken nuggets for supper.

~ Alison




Wednesday, October 16, 2013

August Reality Check

Diagnosed with relapsing/remitting multiple sclerosis five years ago when my kids were four and one years old, I tried to find support meetings or organizations to provide assistance to moms dealing with chronic illnesses like MS.  There were none at the time and I don't think there are any as of yet.  Part of the reason for this is probably because moms, especially moms with limited energy, are very busy people and don't have alot of time to travel to a realtime support group meeting, or initiate/organize such a group, even though it might benefit themselves and alot of other people.

Once I fully recovered from the severe relapse that precipitated my diagnosis, I refused to focus on the fact that I had MS.  Instead, I decided to pursue a career in fiction writing and forget that I had MS for awhile.  I soon had a publishing contract in hand for a daringly erotic and subversively different kind of fiction, one that has gained in popularity since I discovered its existence - that of male/male or gay male romance.  Three published books later (two novellas and one full-length novel), I'm waiting for a fourth book (my second full length novel) to go through editing, and dealing with the reality of experiencing another MS relapse this past August.

Usually cautious in the summer about spending time outside in the heat, this past summer I threw caution to the wind and spent many lovely days outside at my mother-in-law's home with my husband and kids, cooling off in the pool if I got really uncomfortable. I do remember coming home each time and barely having the energy to put the kids to bed before collapsing in exhaustion. I should have realized this was probably not the best situation.

So in August, just as our community parking lot and paths were dug up for a total repave, causing me much stress and added activity since we had to park on a nearby street instead of right in front of our home, I experienced another relapse.

I was not expecting it and it was very much unwelcome. At first, as I felt the numbness creeping up my feet and legs over a few days, but tried to ignore it or imagine that it would go away as quickly as it came. I didn't change my activities - I still had two kids to entertain for another month before school started. By that weekend, however, when the numbness extended up to my waist, I knew I was experiencing a genuine relapse, and I'd better slow down or it would continue to get worse.

Slowing down when you are a wife and mom is extremely difficult. Although I explained to my husband and kids what was happening, and that I needed to step back, I'm not sure they fully understood. It was as much of an inconvenience to them as it was to me. When my legs and feet became so numb that I had trouble walking, I had no doubt they believed what I was telling them. After several days of fearing I'd fall while out walking the dog, I borrowed a cane from my Dad, which gave me confidence and helped maintain my balance. It also served as a visible signal to others that I was experienced some physical issues. I spoke to the foreman of the paving company, cane in hand, about how difficult it was for me to get around with all the paths and the parking lot dug up, and he promised to get the paths paved as soon as he could. 

I also experienced debilitating fatigue. My mother-in-law had planned for us to take the kids shopping for their back-to-school items and some new clothes. Even though she drove and we only went down the street to Walmart and The Children's Place, I had to sit down several times to rest, and even the normally not too difficult job of choosing clothes and finding sizes for the kids proved mentally exhausting.

The worst part of a relapse is not knowing how bad it will get. As the numbness slowly creeped upward, I feared that it would go as high as my neck or even higher and that my arms and hands would be severely compromised again. It felt like being stuck in invisible quicksand, not knowing how much I would sink, and also understanding that the anxiety and fear of that unknown could make the relapse worse. So many nights I went to bed hoping that the numbness wouldn't be any higher when I got out of bed in the morning. And sometimes, lying in bed on waking, I didn't want to get up and face the altered sensations of my body. But I had to get up, because my kids and my husband were depending on me, which was a very good thing. It is important to maintain function and motivation in the face of sudden impairment. One simply has to keep going and hoping for the best.

Luckily, with alot of help from my husband, family and friends who assisted with entertaining the kids for the last few weeks of August, I made it to the start of school. My son entered Grade One this year so both kids are in school full days, and I put myself on strict "couch rest" for a couple of weeks, watching Ellen and HGTV and napping when needed. Soon, my symptoms started to very slowly decrease in intensity.

Now, two months after the start of my relapse, I am almost back to normal. My energy has returned, my legs and feet feel close to normal, and I'm able to go walking for some moderate exercise now. I still have a small band of numbness around my lower chest, which sometimes feels tight in the stereotypical MS Hug phenomena. I'm sure that will go away eventually. I've gained about five pounds which I really didn't need because of the stress of it all and not being able to exercise. But I'm trying not to beat myself up about it.

I am very thankful for all the good things in my life - my two gorgeous and talented children, my loving and helpful husband, my brand new niece in Toronto, my ability to write fun and sexy stories that are actually published, and all my friends on Facebook and in the Ottawa Leather and Fetish community that keep my wits sharp and my curiosity piqued.

I won't be referencing my MS in every post on this blog. But I won't be shying away from the challenges it gives me either. It is a part of me as much as anything else.

The Spoon Theory

Recently I stumbled upon a very accurate analogy to describe what it is like to live with a chronic disease such as MS, called The Spoon Theory. The author does a great job in demonstrating the energy limitations imposed by chronic illness or disability. If you've ever wondered what daily life is like for a friend or loved one with such challenges, this is as good an idea as you'll ever get:

The Spoon Theory by Christine Miserandino

~ Alison

The Challenges of Parenting with a Chronic Illness


I battled for a long time with the idea of creating a blog to describe my struggles as a mom with a chronic illness. I didn't want to make the fact that I've been diagnosed with MS to be a major facet of my life.

I had five relapse free years after my diagnosis during which I simply tried to focus on other things. This August, I had to face the reality of another MS relapse. It was almost as if I had to go through the adjustment process all over again.

Now that I've been forced to face the fact that I DO have a chronic illness that can rear its ugly head at any time, I find I need an outlet in which to deal with that hard fact in a way that will help me to process the varied emotions it engenders and maintain an optimistic outlet.

I can't just bottle it all up inside.

I've been going crazy with so many thoughts and worries in my head, from how will I parent my two kids to the best of my ability to how can I maintain a healthy relationship with my husband, to how will menopause affect my MS or vice versa. So many things that if I don't write some of it down I think I will explode. I can only hope that there are other moms out there, dealing with MS or another chronic illness, or a disability, who can relate to my struggles, doubts and fears as a mom and a wife.

(The blog title refers to my daily injection therapy - a treatment to control my disease as much as possible, and to a popular children's book by Dr. Seuss.)

~ Alison