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Tuesday, December 3, 2013

Let's talk about sex and demyelinating disease!

**Please note that I will be honest about Sex and this is not intended to offend anyone but hopefully 
 may relate to what you experience**

SEX! Yes, I said it and I will say it again SEX!! This is such a hush hush topic. We tend to keep this to ourselves. Avoid talking about it to your partner or physician. But why?? This is a very important aspect of life, love and marriage. But when you have a demyelinating disease and severe fatigue, the conversation with your partner or physician gets even more quieter. Let me break it down for you...

  1. Fatigue: I have severe fatigue. I can barely have energy to wash dishes, how the hell am I going to have sex? I have to rest up. I cannot have sex in the morning because it would then zap all my energy I have for the rest of the day. By nighttime, I am too tired from the day that all I want to do is snuggle down in my bed. 
  2. Sensation: The sensation is not the same. I have numbness at my "lady parts". What used to turn me on, no longer works. Sometimes the touch of my husband's hand is painful or irritating. Orgasums are few and far between. I am left frustrated, annoyed and wondering what is the point of having sex.
  3. Incontinence: I'll say it...one time after sex, I stood up and urine just started streaming out. I had no idea, no feeling, nothing. The dogs were looking at me like "hey, we get into trouble for peeing on the carpet"!Also,  I am afraid that I will leak during sex. Which is so embarrassing! I have to make sure I empty my bladder before sex but that really doesn't mean anything because sometimes I cannot completely empty my bladder. 
  4. Muscle Spasms: Back, legs, arms, neck, feet! Gesh! I am feeling like crap because of the spasms so why would I want to have sex. And sometimes, I will get a spasm during sex. Here my husband is thinking he is doing a great job and I am saying "GET OFF OF ME! BACK SPASM!". 
  5. Joint Pain and Weakness: These 2 things make certain positions impossible. Being on top, nope, weakness in my arms and joint pain in my knees kick in. Then Tremors in my arms and legs worsen. Being on the bottom...well this may be better but my legs feel weighted after awhile. But then you have to worry about back spasms because you have extra weight from your spouse and you are moving around. 
  6. Uhthoff's Syndrome Worsens: Yep, it does! Residual optic neuritis symptoms come back. Tremors kick in. Body temp rises, so now you are hot. You can barely lift your arms and legs because they are so heavy. Feels like you are having an exacerbation! You have to lay there and wait until it passes.
  7. Vertigo: I have some vertigo. Not too bad. But sometimes during and after sex, the room feels like it is spinning. I just have to lay and pray that it passes!
  8. Humor: Keep in mind that you have to keep your sense of humor. You have too. Why be hard on yourself? Life with this disease is already difficult....laugh!
So, after all the aforementioned above, I do ask myself A LOT "really, what is the point of even having sex?" But then I think, I need affection, closeness and love. I need to know that my husband still wants me even though I am sick. I need to know that my husband still finds me attractive. I need to let my husband know that I still want him. 
On a positive note, sex releases endorphins that ease pain and depression! At least that is what my husband always tries to tell me!

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