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.


  1. Glad to see your new blog, Liz. I love the page's subtitle of "A daily reality injection with a dose of optimism" because that's so you! Even on the days where you're given more challenges than solutions, it's inspiring that you always have a silver lining to mention and share. I look forward to future posts.

  2. Thanks so much! It's hard to see the positives some days but I do try. And I know there is always someone in a worse situation than I am.