You, me & my connective tissues

 In Adapting, Carers, Disability, Ehlers-Danlos Syndrome, Emotional Impacts, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Self-Care

Oh, the things I never thought I would have to explain.

I’m 28, and I hobble into the physio rooms using a walking stick and the wall, trying for the life of me to pretend that everything is hunky dory because I know, I just know what my physio’s first words are going to be. And sure enough, she looks at me and says “what happened?

I come out with a stream of fibs, each more unlikely than the last so that I don’t have to have an awkward conversation:
“I was doing my exercises, and it happened…”
“I was picking something up off the floor… ”
“It just popped out!”

My physio wasn’t born yesterday, and she is very switched on to all things hypermobility. So she looks me dead in the eye and says, “You were having sex, weren’t you?” “Yeah.” Big sigh.

The excuses I have used over the years!!! No matter how old I get or how long I’ve been married, there is still something mortifying about popping your hip out mid-coitus and having to it the explain it to your physio the next day. Now though, my physio just high fives me and says, “Yay! I’m just so happy you are having sex!” because…. well… priorities! She’s a top chick.

No one gave me a handbook to my body, and people DEFINITELY didn’t talk about how fraught with danger adult fun time can be. Really whoever invented the missionary position should be drawn and quartered.

From dislocating a knee trying to sexy dance at a wedding to subluxing a hip mid-sexy time, hypermobility and relationships can be fraught with danger.

But then there is the other side, the emotional and everyday side which can often pose the most difficult. As a “zebra” there is always something; sore ankle here, head spin there, a random medical thing that no one can figure out right over there. Need to get to sleep… “Sure, here are your 17 pillows and instructional DVD on how to position them”; want to have dinner out….you search for ages to find somewhere that you can eat at because you have so many food sensitivities, or just say to hell with it, then spend a romantic night on the dunny (toilet).

With all this going on every day it can be hard to find a balance between partners. My husband once said to me “I feel like I can’t tell you when I’m sick or sore because you are already dealing with so much.” The first time he said it I was baffled, I felt like I had let him down, that I hadn’t been supportive. But the more we discussed it, the more it became apparent that it wasn’t anything I did or didn’t do. He had somehow just taken on this role of healthy, able-bodied “carer” as well as husband and lover.

We have made it a very conscious thing for us to try and achieve balance. That’s not to say that he stopped helping me when I needed it (and boy do I need it sometimes), it’s more that I stopped putting others needs above mine. I would always say yes to people asking for help. Be it a pick up from the airport or to look after a dog for the weekend, even if I wasn’t really up to it.

By always saying yes, I was putting other people’s needs above my own, and in turn my hubbies. Which meant he was having to do more for me because I was doing more for others. Now, most times I say no and I celebrate every no. Every time I put me first I give myself a little high five… a well done on looking after yourself shoulder pat. And if it’s a big no, I call someone to celebrate with me.

By sticking to my daily spoons, and taking better care of myself, we have gone back to much more of a partnership than a carer’s role. (If you haven’t read about spoon theory here’s what I’m talking about.

We work every day to make sure we have a healthy balance. Its hard at times but worth it.

If you have made it to the end of this blog post, well done. As a reward, I’ll impart some wisdom. There are plenty of ways to have bendy-joint approved adult fun, just speak to your physio or have a look at this article for some ideas. (Yes, it related to arthritis but the positions are also applicable to hypermobility).

This blog was contributed by guest blogger, Chloe Wigg.

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