So, how's your love life these days?
Has MS robbed you of an intimate relationship with your significant other?
I'm told it doesn't have to.
You don't have to take my word for it, but I kinda included my personal thoughts in the following chapter of my common sense guide to living with MS: I Have MS. What's Your Super Power?
CHAPTER TWELVE: Not tonight, dear, I have a head ache.
This lovely July morning dawned in a typical fashion of early fall design. The air was crisp and I could smell the distinction of football in the air. Kind of weird for July, but West Virginia is not known for playing by the weather rules of nature.
Regardless, it was the perfect morning for chores. I cleaned out my closet in record time, put dinner in the crock pot for later, and even enjoyed twenty minutes of gentle yoga, all before my teenage son even bothered to address the day from his dark bedroom.
I felt great.
And, then the bomb dropped.
As I was preparing to take a shower, my head began to thump dully and my vision blurred around the edges. Before I could decide on the color of my wash cloth, I knew I had a migraine, full blown and very, very unexpected.
I have always been prone to headaches, but since my diagnosis, and maybe because of it, I don’t know, when I experience a headache it absolutely ruins an other-wise wonderful day.
And these were no normal headaches. It is an extreme hangover sensation from days left on college campus. There is no way to explain the pain, the nausea, the dizziness that accompanies these headaches. And there is no way to outlast them. Drugs are necessary and immediate.
Thank goodness I have the luxury of my teacher’s summer holiday, as well, the ability to down my extra strength ibuprofen and recline on the couch to close my eyes and try to relax. A cool cloth over the eyes and I am set.
I hate headaches, especially these of the “hangover” variety, and especially when I didn’t even get to imbibe in something yummy the night before that would result in such pain. I was never into the marijuana that many of my friends experimented with when we were younger and some still do to this day. It is a way of life for some people and I know several folks who would love to move to Colorado if they could.
Pot never turned me on and use of anything like that has always scared me. So, in my research of MS, I have yet to understand the effects that smoking pot has on multiple sclerosis. Evidently marijuana offers respite from MS pain. I refuse to judge anyone who uses pot for medical reasons. We all must discover our own weapon to battle our kryptonite. We do what we need to do and there is no disgrace in that. It is just not my thing.
But at that moment, I would have “passed the pipe” to extinguish the pain in my head.
Probably more than the intense pain, I hated the suddenness and unexpectedness of the arrival of my pain. There was no indication that it was coming. It just arrived like an unwelcome guest and there was no polite way to let it know that it was not welcome. And even with the attitude of complete indifference to its prescience, it refused to take the hint. It was oblivious of my disdain for its existence and it totally ignored my attempts to kick it out the door. Aren’t ignorant guests fun?
So, as I reclined on my couch, full of prescription pain killers, cool cloth on my eyes, and my twitchy feet elevated on cushions….yes, now my lower extremities were involved. (Somehow my brain had gotten the message out and everyone was invited to this little pain fest.)
My drop foot, even though elevated and not on the floor, refused to remain on the sofa and kept flopping over the side and onto the floor. I mean, really. Had all of my muscles gone on strike? Why could something as simple and elementary as keeping one’s legs stretched out before them become such a chore? But that what was MS was all about.
Then I realized what was happening. MS had been stalking me and teasing me all morning by allowing my body to return to things gone past. I had walked across the room with no stumbling. My mind was clear and I was full of energy prior to the arrival of head pain. I had been duped and MS was ready to crown itself victor. I couldn’t help but to raise my invisible glass to this worthy opponent, and I allowed it to wallow in its success for a few more seconds.
Game well played, my friend; but I could feel the effects of 800 milligrams of ibuprofen coming to my rescue and in rebellion of my screaming head, I reached for the television remote and fired up the infomercial on channel whatever. I apologized to still sleeping teenage son, but shook my mental fist at MS.
Take that, head pain, because I can. And I will.
And now to the nitty gritty, X-rated stuff…
I don’t know how guys with MS handle this, but there are times when I must avoid intimate contact with my husband at all cost. And it has nothing to do with lack of desire. It has everything to do with FEAR.
What if I pee on him? Or worse? (Because “that” happens also. Yuck!)
Incontinence has played a huge role in my MS identity. Remember the traffic light? Incontinence is difficult to talk about, not to mention a real sexual turn-off.
Add to the possibility of a bed-wetting session, there is the existence of the woman parts going completely numb. Yep. That’s fun. And when he hears me writhing in discomfort, he only hears lustful bliss.
I never want my husband to feel rejected, but I also need to maintain my own dignity.
Wow, isn’t having MS enough of a challenge without the need to comfort our loved ones?
Worry = Stress = Disaster
And I have worried and stressed enough about this issue of intimacy. So, work it out on your own.
Communicate with your partner. Own your kryptonite, but don’t let it own you. You may borrow my Common Sense if you want.
But that' all I have to say about that.
Intimacy can be challenging regardless of your medical
condition. The NUMBER ONE rule to follow is to listen to your
body. The CO-NUMBER ONE rule is to communicate with your
partner. Be honest in your desires. No one is a mind reader, so
certainly do not expect your mind to be read! Make your voice
heard. In the end, both parties will benefit.
Sex has never been a comfortable topic for me to discuss, so I will
instead offer these resources to boost your sex life.
Sex for Dummies (Yep, there is a Dummies book for everything) by
Dr. Ruth K. Westheimer
Enabling Romance: A Gide to Love, Sex, and Relationships for the Disabled(and the people who care about them) by Erica Levy Klein and Ken Kroll.
Guide to Getting It On by Paul Joannides www.amazon.com › Books › Self-Help › Relationships Amazon.com,
The Ultimate guide to Sex and Disability by Mariam Kaufman, Cory Silverberg, and Fran Odette http://cleispress.com/
There are many, many websites and sex resources available on line, but this little goody two shoes is blushing at the very mention of a few encountered in my research. You are a big girl. If you are really interested and have an internet connection, I am certain you can find what you need.
Just as it difficult to know how and when to disclose you MS to a potential partner, it is even more difficult to be open about the many obstacles involved in sharing a healthy physically satisfying commitment. So, I will say it again...COMMUNICATE.
I was very fortunate by being on the receiving end of a relationship that is not based on physical intimacy. My husband knew of my MS. He was even warned by mutual acquaintances that I was damaged goods. None of that stopped him from loving me, though. We just like being together. That's a HUGE turn on for me.
This just tells me that sex isn't what intimacy is about.
Like who you are. Like you are with. Be comfortable. Be happy.
Have a wonderful weekend and a blessed Easter.