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Human Vs Bionic

The one where I talk about the reality of EDS, possibly going bionic, being on bed rest, top pals and a lot of crying

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It’s been over a week of me being on official bed rest. Official because it was decided by my GP and my physio, not a case of me having a really long and lazy week.

This could just be a bad Ehlers-Danlos related flare up, although so far, the medical professionals seem to be thinking otherwise. The truth will be in my appointment with my consultant later this week. Either way, something has happened to my hip. Hip pain automatically sends me into a spiral of anxiety, purely because I have had two operations on my right hip before and there’s always been the underlying threat that my human hips aren’t going to last me much longer and I will have to turn bionic. Part of me is currently saying “yep, get rid of the human hips, I can’t cope with them anymore” but I’m kind of attached to my hips, literally and metaphorically. No one told me that they would only last(ish) 24 years – where is my refund?!

So, anyway. It’s been a long week, broken up by sleeping, binge-watching Waterloo Road and counting down the hours and minutes until my next dose of the magic pain relief. And there’s been crying. So. Much. Crying.

Rewind ten years and my life could not be more different. I was dancing three plus times a week, playing netball and hockey, trampolining and was walking two miles a day to and from school. Now, I can barely walk downstairs and have resorted to shuffling down on my bum when no one is looking because it’s quicker and easier. I’ve probably said this before, but I’m not a jealous person but seeing my friends going out and living their lives so spontaneously is painful. Punch-you-in-the-stomach-at-the-normality-of-it-painful. Anymore than two hours out of bed at the moment completely exhausts me and it’s a tiredness that I struggle to put into words. My life is on hold, waiting for the next medical appointment: hoping to get some clear answers, waiting until I can next take meds (the hour before meds time is literal hell), waiting until I’ve got enough energy to try and get out of bed, even if it just to the sofa. Endless waiting, only I’m not entirely sure what I’m waiting for. Because I’m not going to get better, I’m stuck with this life-sucking disease, which no-one really knows about, waiting for the next part of my body to fuck up. It isn’t just bad joints…if only…it’s all the stuff that you can’t see: the gastro problems, the blood problems, the respiratory problems, the electrolyte problems.

I’ve more than had enough. Obviously, there is a huge correlation between physical health and mental health and I don’t think it will shock anyone when I say that my mental health is also taking a bit of a battering at the moment. The anxiety of my current situation aside, I just feel so so sad. I feel stupid for being sad, but hell, I think, maybe, feeling crap is deserved and I need to work on validating my own feelings instead of brushing them away.

Something that I have learnt over the past week or so, is how bloody great my friends are. One of my friends told me a while ago that she had read up about EDS online so that she could try and understand a bit more what I’m going through and honestly, it’s probably the nicest thing that anyone has ever said to me. My friends are all incredibly understanding and get that when I cancel, it’s not because I’m being a flake, it will be because I am utterly exhausted and can’t function or am in more pain than is my normal and can’t function. I hate cancelling on people, but sometimes it’s got to be done. Over the past week, a couple of my friends have made the effort to text me every single day. Not necessarily to see how I’m doing – my reply doesn’t vary much from “shit” or “crap” or “meh” and no one needs to hear that all the time! They will tell me about their days, send me countless memes, bitch about things they’ve seen or heard. Basically, they are trying, possibly without even realising, to keep a bit of normality in my life. I might not be able to get out of bed, but I’m still interested in other people’s lives. I still care deeply and want to know if one of my friends is having a crap time. Physically, my body isn’t working all that well, but mentally, I’m still here. Sometimes I’m a bit nonsensical because of morphine (shout out to that stuff) but I still want to be involved. I want to stay connected to the real world, even if it is only through text messages and phone calls.

Hopefully, by the end of the week, I will have a better idea of what’s happening, but I’m not holding out for a miracle. Big thanks if you’re one of the few who have given me endless support, love, sympathy, bitching-fests etc etc etc. I appreciate it more than I can explain. Thanks for trying to keep things normal at the stressful and very much un-normal time.

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