Friday, April 26, 2013

Let's talk about sex baby...

Image by Kelly Bell
In keeping with the 'discussing subjects that gain little attention' philosophy, I thought it would be worthwhile to address some issues that PWN may encounter when it comes to sex. Under the age of 18? Know me in real life? Kindly click back to another post please. Thanks!

Sex, love making, rumpy pumpy, bonking, humping - whatever you call it, we all do it (if we're lucky!), enjoy it and yet it's still a bit of a taboo subject when considering issues that affect a PWN. It's not a topic that crops up too often in the forums and an area with very little research. I don't think it's something I've ever discussed with a physician, let alone anyone in a virtual world filled with complete strangers. I must be insane writing this post!

Too tired for sex
It's fair to say that this isn't an issue effecting PWN. Children, a change in circumstances, commitments or routine can all push sex down the list of prioritises. Nobody has an unlimited amount of energy and once its gone, the prospect of sexy, bedroom athletics can easily disappear with it. The way I see it, the problem doesn't lie so much with feeling tired, but more with bad timing. Sex gets tagged onto the end of day like an after thought. How many people climb into bed after a long day, to only then consider sex? It's this mode of thought that can be problematic for PWN.

Most people with this condition are likely to have reached a point of complete exhaustion (and possibly fallen asleep) way before they've gotten anywhere near their beds. It's a very simple formula really...

                              

By the time we've crawled our way into bed, it will be with a deep exhaustion that nothing can rival, not even the prospect of hot, steamy sex. Keanu Reeves (my long time love/obsession) could be on bended knee whispering all manner of filth in my ear and I can pretty much guarantee that he wouldn't get past first base!

It's important that our partners understand the formula, to avoid any unnecessary feelings of rejection or hurt. For them to ignore it is a little unfair and can create unnecessary pressure. In my opinion the solution can be easily found - Make sex a priority. Consider trying a different time in the day. If this isn't possible, then have an early night. Allow sex to be the 'unwinding' element of the formula, then both parties can happily fall straight to sleep after guilt free! Of course, there will be times when it's just not going to happen. In the grand scheme of things, this isn't and shouldn't be a big deal. No one should be made to feel guilty for something that is out of their physical control and a lack of desire to have sex due to tiredness is no different.


Did the earth move? Hell yes and so did my legs!
I suspect that the occurrence of cataplexy episodes during sex is much greater than any forum discussion or internet search would have me believe. It's a difficult topic to gauge as there is so little research available. I'm taking an educated guess and proposing that the embarrassing nature of the subject is the main reason for so little discussion. The trouble with embarrassment is that it can easily lead to hiding things, which is only a few stops away from feeling ashamed. I'm concerned that the limited amount of information/discussion online, has the potential for someone newly diagnosed to think that this is an issue that is specific to them, not the condition. 

For those who are new to the term, cataplexy refers to episodes of uncontrollable muscle weakness (such as legs giving way) triggered by an emotion - laughing for example. More detailed information can be found here

I consider myself very lucky as I have a very mild form of the condition, with symptoms easily managed with treatment. However, I can imagine that adding a big 'O' to the equation could lead to difficulties for those with untreated or chronic cataplexy. Collapsing in a paralysed heap is bound to be a bit of a mood killer. I would hope that any long term partner would be understanding, however getting to that point with a new partner could be a little embarrassing at first. It makes sense to warn any sexual partners beforehand; perhaps making a bit of a joke out of it so it doesn't feel too uncomfortable. Episodes such as these maybe common place in our world, but other people may never have seen anything like it before and panic. Last thing you need is emergency services knocking at your door! Failing that, perhaps make a big deal of how amazing the encounter was after! Like most things, it's workable and shouldn't be the sole reason for not enjoying an intimate relationship. We all have our quirks, with this just being of the slightly more unusual variety. If a partner is not accepting of me and my quirks then they can jog on, an approach I hope most people adopt.


During my digging around I came across an article discussing a link between sexual hypnagogic hallucinations and narcolepsy. In layman's terms, hallucinations triggered during sexual encounters. Now if you'd asked me a few weeks ago if this was something I have experienced, I would have said no. The term automatically had me recalling memories of frightening audio and visual impairments with my brain settled in sleep mode, whilst my body was awake. The more I read, the more I realised...yes, I do experience these!

The paper uses the occurrences of out of body experiences as an example of a hypnagogic hallucination, something that I hadn't given much thought to in the past. The occasional sensations I have of falling, accompanied by a slow, seductive spinning during sex are examples of hallucinations, albeit milder versions. I've never really considered that these were part of my narcolepsy, so it was an interesting read.

So....
Cataplexy, hallucinations and tiredness may all be additional considerations to sex lives, but needn't be the sole reason for avoiding intimate encounters. The most important thing is to discuss any concerns with any partner. Yes its embarrassing and requires a level of openness that may feel a little uncomfortable, but surely that's better than the alternative...avoiding sex or partners misinterpreting situations that can lead to them feeling hurt, frustrated and rejected.


Sex is a healthy element to a relationship. The physical benefits of a regular sex life are well documented - reduction in blood pressure, stress, boost to immunity and promotion of restful sleep. The psychological benefits however, are just as interesting. Research has repeatedly found that the release of the 'love hormone' oxytocin during sex can have a positive effect on anxiety and depression; with one piece of research claiming that oxytocin alone can "change how people see themselves, which could in turn make people more sociable ...a person can perceive themselves as more extroverted, more open to new ideas and more trusting." Medical New Today.  Physical benefits, psychological benefits AND fun. That's good enough reason for me!

11 comments:

  1. "Rumpy pumpy" is a new one for me. It made me have slight C. :)

    I actually have a 3 day rule for my husband's sake. If we haven't had sex in 3 days, I make sure we do that day or very soon. For one, it keeps him happy. For two, it keeps me happy, too, because once we get going, I'm glad I decided to make it a priority instead of just going to bed by myself again.

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  2. Thanks for stopping by and commenting Heather. Great to see you here. I LOVE your 3 day rule idea. Sex is like an engine - needs constant running or the old girl ceases up!! I can imagine that your approach helps ease any potential feelings of guilt, when the n is at its worse.

    Think rumpy pumpy originally came from the British 60's carry on films. Oh matron!

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  3. Thank you for sharing! I swear you are a God send! When I was first diagnosed about 3 years ago, this was a huge problem in my relationship. I didn't fully understand my condition at the time and my husband(then fiancé) felt rejected. It was an awful feeling for both of us, and at times can still be frustrating. I really like the idea of the 3 day rule! I think this is something I need to try, as well as becoming more responsible with my planning, I need to have a schedule..

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  4. I expect experiences like ours happen far more often than people are happy to admit. I understand the reluctance to openly discuss very personal subjects such as sex, but it's important for others to know that they are not alone with these issues. It's so difficult when energy is limited, we really have to consider what our priorities are and use time more efficiently. Must say, I do like the idea of sex schedules! If it helps, then why not!

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  5. I'm very glad to see a post on this subject, especially with all the useful information you included! I got Narcolepsy/Cataplexy three years ago when I was 16, and was definitely a virgin haha. My friend made a joke once about what my first time would be like with Cataplexy and I realized she was so right--if sex doesn't involve "strong emotions", I don't know what does! There needs to be more brave people like you who aren't afraid to share a bit of their personal lives to reassure others that they can still enjoy sex despite their N&C :) thanks!

    But I've since made up for all that innocence, and am happy to share that cataplexy doesn't bother me much at all in bed! And my boyfriend is totally understanding on the rare occasion Cataplexy does cause us problems, which is usually when we're being too silly and I laugh too hard ;)

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    1. Thanks for taking the time to comment Julie and glad to hear that cataplexy doesn't stop you from enjoying yourself! I think everyone needs a bit of reassurance sometimes. Hope this goes some way to helping others feel more comfortable talking about cataplexy and sex.

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  6. I love your blog! I was diagnosed in my first year of uni, the same week that I went on my first date with my first boyfriend. Learning about my condition and learning about love went hand in hand, and I think this was particularly the case when it came to sex. Initially not medicated for cataplexy as it was relatively minor, I regularly experienced attacks during sex. Usually they were small, but I did once almost break his nose collapsing on him! What I found was that it really didn't interfere too much - though I now recognise that anticipation is a major trigger for me - but that it really deepened my relationship. Sex with someone you love is all about sharing and being vulnerable, and you can't get much more open and vulnerable than a cataplexy attack. In the end, it makes a funny quip among friends, and in private it was something very special that I was sharing with someone I loved. I think if I had to weigh it up, it probably gave me more than it took from me.

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    1. Oh...anticipation is everything ;) I completely agree that honesty, openness and vulnerability are the hallmarks of a good relationship. So lovely to hear that cataplexy became something positive that you felt you could share with another.

      Thank you for supporting my blog. I'm glad that you're enjoying it :-)

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  7. Thank you Claire!
    I'm noticing that I'm the only man to comment. I've had severe N/C for 24 years and I definitely have a problem making it to a complete orgasm. I first dealt with it by abstaining but with my fiancé who was my first wife 29 years ago, that was not acceptable. She totally doesn't mind that I sometimes have a full body collapse from cataplexy at times in the heat of the moment and we are working on ways to keep it from happening more often, including making sure I'm taking my meds and planning for daytime instead of late night when I'm mostly asleep.

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    1. Thanks for taking the time to comment Brian. There does seem to be a shortage of male perspectives on the subject....

      I'm really pleased that you've identified a solution to work towards. Where there's a will and all that!

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  8. Thanks so much for writing this... it makes me feel way less weird :P This is an increasingly frustrating problem for me as my muscle weakness tends to kick in about halfway through. As I don't have the ability to support myself, variety in the bedroom is pretty much non existent. Luckily I have the world's most understanding boyfriend who doesn't mind at all that he has to put in most of the work, but it would nice to be able to lead the way once in a while. Thanks again for you honesty and I will definitely be following your blog from now on :)

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