Lets Talk About

If you work with me or you were my teacher or you’re a delegate or my cousin or you’re friends with a parent of mine, or you just generally don’t feel comfortable knowing intimate details about my life, then you shouldn’t read on. And I mean that. If all you’re going to get out of this post is not being able to look at me the same way then rack off, – key message: being a sexual person is hard when your body sucks and it would be super cool if partners had a hope of understanding that. Hence why I’m talking about it. Off you go.

OR.

We could all be adults and recognise that this issue is as prevalent as any facing people living with invisible illnesses – in fact, it’s even more important to talk about this issue than most; its a double taboo. Not only are we fighting the awareness battle on issues relating to sick people who don’t look sick, but sex (oooooh) is a taboo on it’s own. So I’m going to talk about it and I’m not going to hold back because I either have a lot of confidence or absolutely no shame. One of the two.

But I also recognise that just talking about it is actually real progress on the issue, because the whole problem is that sexual partners don’t (and can’t be expected to, with the current awareness) understand.

Last chance to turn back. There’s no judging me after this. I warned you.

******

So it’s no secret that I really like sex.

Well it might be, depending on how you know me. Sorry about that. I did warn you.

But I’ve always enjoyed and been fascinated by this physical experience, both as a form of expression of feelings for someone (whatever those may be #hatesex) or as something of a recreational activity (for want of a better term) with someone you know and trust (and more to the point, are attracted to.) I love the excitement, I love the chase, I love exploring what does it for people. I love batting my eyelashes, I love wearing pants that hug my child-bearing hips (I’m sure there’s a “what I think I look like” vs “what I actually look like” meme potential here but anyway, I can dream). Most of all, I love finding people on the same wavelength. I love finding people with that same eye-twinkling smirk and there’s chemistry and I love playing with fire with those people until it explodes. My point is that this is something that I love and genuinely enjoy in my life. It makes me happy. It means something to me in the same way that hobbies or other enjoyable experiences might mean something to other people. It excites me. And therein lies the problem.

Beta blockers work to stop the heart from beating too fast, which is great when you’re me and your heart is doing that all the time for no good reason. The main issue is obviously that there are some circumstances in which your heart ought to beat faster, like when you run or when you’re nervous or when you’re being bent over and pounded from behind, whatever. (Woah.) My heart won’t beat faster no matter what I do and therefore I’m basically Homer Simpson doing cardio. Because my heart won’t beat faster to circulate and oxygenate the blood faster, I become extremely breathless extremely quickly. Like.. gasping. But, not like, sexy gasping… more like, are you actually going to die gasping, which is really hot.

On top of that, all of my muscles are extremely weak and extremely easily strained. This is partially also because my body circulates blood about as efficiently as a sloth on smack does taxes, and partially because I generally don’t move if I can avoid it, and therefore the sort of glue bits that hold the body together have adhered to themselves (kinda like when you try to Glad wrap something and you screw it up). What this means is not only do I struggle to actually physically do some things because I’m just not strong enough (please don’t ask me to sit on you and bounce for the love of thigh muscles) (in fact being on top at all is really reserved for a very good day), but when I do try to do anything, it takes heaps more exertion for me to do it, and therefore I tire faster and the little heart that could(n’t) becomes a problem again. (In the same way that a stronger person might not break a sweat carrying a heavy load but a weaker person with the same load would be up struggle street and get more tired. Y’feel?)

ALSO. My endometriosis (or something else, probably some misplaced organs knowing my luck #tilteduterus, I’m on the waiting list for a laparoscopy to see whats up) causes me a lot of grief with what’s called deep dyspareunia – a deep pain during intercourse. Basically, the more “well-endowed” my partner is (teehee), the more sex begins to feel like having my spleen rammed with a sledge hammer (less teehee). And nothing gets your heart rate up (or is supposed to) like desperately trying to push through that feeling for the sake of your poor partner who landed this chick who talked such a big game and then wound up fucking like a brestless starfish. Hur.

In the context of a relationship, this all isn’t so bad because you can have the whole understanding “this is how not to kill me” conversation and, you know, it’s not exactly sexy but its kind of romantic and that’s all g. It’s the more casual encounters, where you’re trying to be all no-fuss so you kind of just go for it and then you get caught up in the heat of the moment and before you know it you’re completely limp on the floor gasping so hard for breath that you can’t tell your partner what’s wrong. While crying. Oops.

I’ve had several varied reactions to this but not one of them has been correct in a medical sense, and frankly few of them have been right in an emotional sense but hey that’s understanding and we’ll get to that. Everyone’s instinct is to grab my arm and yank me up like a rag doll, when getting up is precisely what I can’t and shouldn’t do at that point. I’ve also had people shake me, yell at me to get up or wake up, even give me a little tap on the cheek. And panic, everyone panics of course. Totally understandable, but let me help. My problem is that I’m not oxygenating blood fast enough, so help me get what oxygenated blood I do have to the most important parts of my body by lying me down and elevating my legs. I bet you can even make that sexy (although legs over shoulders is the worst position for the dyspareunia. Standing up is the best for that, but the worst for the POTS. There’s no winning.) Avoiding changes in which way up I am helps too, or at least giving me a second to adjust. Like it’s all very sexy when you want to hang me off the side of the bed or bend me over, until you pull me up and I black out. Even Christian Grey doesn’t do necrophilia.

Not only am I experiencing physical discomfort at these times, but more so I’m almost always extremely frustrated, embarrassed and frankly, broken-hearted. I’m a guitarist with carpal tunnel, a colour blind pilot, an actor with stage fright. No matter how hard I try, no matter how much I push through, often I just can’t do the thing that I love doing. And what’s worse is it’s not just me who winds up disappointed, and the thing that I love most about intimacy is pleasing other people. What I desperately need a partner to do at this point in time is be a human: no matter how casual the relationship, show me that it’s okay. Knowing me, I probably wrecked myself working to please you, so now, I need you to pick up the poor nymphomaniac and pat my back and play with my hair as I recover. I need to be scooped up and laid back on the bed, and I’ll desperately want you to finish off what we started but I’ll need you to pretend you’re okay with doing it without the riding crop (kidding.) (….. 😉 )

The issues are not only acute/short term either, and these delightful after-effects often cause even more issues when I have to let people down or turn people down and they think I’m just a shit bloke when really, I’m almost certainly cursing me more than they are. The sacrifices that I make to have sex at the best of times are crazy- I just don’t do any other activity that gives me this much grief. I will not walk straight… for days. Often a week. I mean, I don’t walk straight at the best of times but it will basically feel and look like I’ve run a marathon with no training. People will ask me why I’m limping and that’s just awkward. I’ll be extra tired, extra sore, and I’m super prone to irritation and infections (like UTI’s, not STI’s, just to be clear). Still. SEXY. Backing it up the next day is so great tho. That doesn’t hurt a bit. Oof.

Every morning when I wake up, I have a limited number of spoons. Roughly 1/3 the number a healthy person wakes up with. Every activity throughout the day costs me spoons. And sex… Given the opportunity, I’ll run myself into spoon debt. It cleans me out every time. Work the next day will be a massive struggle, any other plans that day would have to be abandoned. I can no longer think or move or function. Contrary to popular believe, I don’t do this with just anyone. I’m quite demisexual, I cannot and will not enjoy this experience with someone I’m not attracted to and I’m only attracted to those I like, love and/or respect. So if I’ve chosen to deplete my remaining spoons with you, please understand that you’re special. What I’m giving up to share with you is special, no matter how no-fuss I try to make it seem. But I will have so much to give to you and I will work until I physically can’t go on to make you happy and when that moment inevitably arrives, I’ll be heartbroken that once again it has come far too soon (pun intended). So if you don’t think and assure me that I make up for my limitations in other ways, you can, quite literally, go fuck yourself. 😜

xo

Why can’t we be friends?

Because you’ll never see me. And it won’t be because I hate people.

Okay, I’ve always been a bit of a hermit. I’ve always loved my own bed and my TV series and cups of green tea (decaf, of course) and sometimes, if I’m feeling really social, my Mum or my sister. I ride the wave of excitement.

But if the last few years have taught me anything, its been that my interests have undoubtedly been shaped by my abilities and limitations. My hate for sport, for example. There was actually a time when I played and enjoyed sport DON’T DIE of shock but actually, think about it. I’m competitive and aggressive – basketball was a great time. You couldn’t get me out of the pool or the sun when I was a kid, a total fish. I loved the beach until it decided to hate me.

I think my feelings towards being social and going out are much the same, now that I think on it. The only friends I have left are the people I work with in some capacity. More or less everyone else has given up because I am, completely frankly and honestly, a shit friend. I don’t prioritise friends and I haven’t for a long time. What I only wish people understood is that I don’t choose to have such a limited capacity for priorities. I wish people understood the sacrifices that I would have to make just to be a friend.

I’ve reached a point now at which I just click “maybe” on basically any Facebook event for a party because the reality is, I probably won’t make it. And I am sick as fuck of being that friend who constantly lets people down. Even this weekend, I did manage to make it to not one but two parties of two beautiful friends and I felt so good being able to do that, even though I was no fun at either, but it did result in my having to cancel on another friend tonight because I just couldn’t keep going. I will have the best intentions and I will want to be there and I will come up with any story under the sun to give you a reason that seems justified to normal people because I can’t explain that pushing myself will likely result in another assignment extension and another sick day off work.

My body works (or doesn’t) on a very strict and precise comedy of remedies and routines. One spanner in the works and everything falls apart. Eight hours of sleep. More hours of rest, so much rest. Every morning and night I have to force down enough horse-sized vitamin tablets to gag a snake, and enough food to stomach them all (nothing more fun than when I pull out my ziplock bag of pills at the dinner table). I have to consume around three litres of fluids – sports drinks and water. I have to complete about 45 minutes of tailored physio exercises (or as I like to call it, palates for the retarded challenged). I have to get a balanced combination of pea protein shakes, fruit and vegies and sugar into me. All fresh because preservatives hate me. Avoid the foods I’m allergic to. As soon as I start to neglect these processes – which is basically inevitable when I’m hanging in Brisbane all weekend for social events – my body completely crashes. It usually starts with cold sores (and my body doesn’t do these by halves, we’re not talking one nice little sore in the corner of my mouth, we’re talking full on herpes clusters here), tonsilitis, urinary tract/kidney infections, thrush, chest infections, colds or whatever’s going around, ear infections, heightened sensitivity to my allergies, worsened gastrointestinal issues; usually all at once and always in addition to more of the fatigue and muscle soreness. This starts a vicious cycle because the antibiotics that I have to take to fix the problems screw with the good bacteria as well, making me more run down. These take weeks to subside, all over a “big” weekend.

The worst part is not knowing. Because you want to attend the party/go out/see members of the human species, you do tell people that you might be there but even with the might, and even knowing that I’m sick, people often still seem let down. By my nature, I tend to attract people who don’t like to be screwed around. When it comes to social situations, I’m very submissive and chilled. I don’t mind where we eat dinner, what time we meet, what movie we see. And if I do have an opinion, I often don’t express it because I’m a bit of a compulsive people pleaser like that. I like doing what other people like doing because I like making people happy. I embrace that, that’s who I am and the fussy particular people of this world need friends like me. Except when I fail to predict my own ailments. And I don’t know what else to do. I don’t know when I’m going to be feeling unwell, all I know is how often that does occur. “Next time, just tell me you’re not feeling well and we won’t make plans.” But I felt fine an hour ago. And I’m sorry. I said I was sorry. And I shouldn’t have had to, but I did it anyway because I know this is frustrating for other people. But if I wanted to only say yes to people when I was sure I’d be able to make it, I would honestly never say yes. I feel myself existing in one-sided friendships where the other person initiates all the contact and it breaks my heart but I just can’t add to it because I already struggle to keep up with the status quo.

So to all of my remaining friends: I’m sorry and I love you. You’re all beautiful for hanging around even though it seems like I don’t care and for the most part you are all so supportive and understanding. I’m so lucky. I just wish everyone could understand like you.

❤ xo