Thursday 10 May 2012

Sex and M.E.

WARNING: This post contains adult concepts.

I have had to do a lot of thinking over whether to post this, and then whether to do it from a better time or a worse time. For now, it's going to be the latter.

Programmes like "The Sex Education Show" on Channel 4 have talked, briefly, about disabled people's sex lives. About them being able to have sex. That, even if they for example, are missing limbs, they can still enjoy sex. They've talked about aids to help in such situations, too. What they haven't covered, are disabilities which have a slightly different effect on one's sex life.

In all honesty, it's like most things related to disabilities. If fatigue isn't an issue, then your possibilities seem almost endless. But add fatigue to the mix and possibilities are extremely limited, and there is simply nothing to help you. If just one of you is affected by extreme fatigue, there are still solutions. There are positions or equipment which enable the healthy person to do the hard work, so the fatigued partner doesn't have to.

But what about when you are both fatigued? When you are both too tired to move from a lying down position. When your arms and legs aren't strong enough to support you? When you don't have the strength to enjoy the other's body. Or even worse, when you're touch sensitive? At that point even cuddling can be impossible.

There seems to be no answer. You can enjoy each other emotionally, spiritually, intellectually. Most of the time you can hold each other, and at least feel the other. But actually having sex - and enjoyable sex at that - can seem impossible.

Hopefully, at times, you both have a good day. You've managed to avoid hospital appointments for a few days, and you're both dosed up on your painkillers. Both partner's "best time of the day" occurs simultaneously, and you can have some fun.

But what about if one or both partners have some mental health issues too? Thankfully my husband's learning disabilities have no effect on our sex life, but my mental health issues most definitely do. They say that for a person to enjoy sex, they need to feel physically and mentally healthy. I haven't experienced that state since I was 10 years old! What hope do I have?

Depression… It makes it difficult to be in the moment with sex. It stops me from letting go, and just puts me in the depths of negative thoughts. How can great sex be experienced when your head is in that place?

Anxiety… It makes just the concept of having sex terrifying. It reminds you of every failed attempt, and thoroughly puts you off.

Stress… It stops you from being in the moment, and instead allows your 5 page long to do list to run through your head on repeat.

ME… Fatigue so intense you simply don't have the energy. Pain so intense you can't move. 10 months of thrush leaving you red raw. Two bodies that struggle to simply climb the stairs - what hope is there?!

Although, sex is the best painkiller for my headaches. I guess because, no matter how difficult it is, it relaxes me and relieves the tension. That's why we laugh at the "headache" excuse women use. I turn to my husband and say, "I've got a headache, can we have sex?"

Both being well enough… That's the toughest thing. You're balancing two lots of ME. Trying to make snippets of health coincide for long enough. Knowing that if we follow through, we won't be well enough to do anything else - including making dinner.

I know I'm not alone. I've spoken to at least one other couple where both partners have ME, who are trying to find a solution… A way for both partners to be well enough and to enjoy it.

There needs to be more support for couples where both are disabled - whether ME or something else entirely. We may be somewhat rare, but we still matter. When the only answer to better sex is to be physically healthy and mentally content, there needs to be an option for those whom that isn't an option.


Tuesday 8 May 2012

Good News

At last! Apologies for the delay in the post, it has been a very busy week, and I simply have not had a clear enough head to think.

I had my tribunal a week ago. It went well! It was moved to earlier in the day, as there was a cancellation. A surprisingly welcome relief, as my anxiety was horrific. It was long, and my husband really suffered being upright. But I got awarded Lower Rate Care on personal grounds, as I need attention throughout the day (for example, I won't go to bed unless I am encouraged for several hours). It is a huge relief! Until summer 2014 as well, yay :)

Just got to wait for my ESA result now...

I find after meetings like this you start to remember everything you should have said. Like, why have I been ill for 12 years? I made up answers at the time, but it's because I keep contracting things that make me relapse. Stupid brainfog! Hopefully everything will work out ok though.

Taking some time out to really chill for the next couple of weeks. Much needed! That might mean less posts as I chill, or more as I find time to write the posts I've wanted to for months...

• My personal story with ME.
• Our story of benefit battles.
• The effect vaccinations have had on my life.
• How I learnt to drive.
• Sex as a disabled couple.
• Making the decision to start a family.
• The balance of pacing v enjoying life.
• Continue the My Experience series.
• How every medical professional wishes to confirm the diagnosis I have.
• The jealousy of those around you when you are too ill to work.

I am also hopeful to do a post for ME awareness week, but in case I'm not well enough, please look at this series my friend is doing, it's not too much to read which can be good!

Anyway, it's 5 years today since my husband asked me to be his girlfriend, so I will leave things on the happy note they started :)