How I manage to keep going with my Ehlers-Danlos Syndrome.

I suppose some people stumble upon my blog when they are looking for information on Ehlers-Danlos Syndrome (EDS), either because they have a diagnosis or suspect they might have it. If my rambling helps one person feel less alone in their struggle then that’s good enough for me. I’m absolutely not a doctor – not that most doctors even know how to spell the condition, never mind how to manage it. But I am learning through trial and error about what works for me. What works for me might not work for you. Similarly, those magical healing crystals might work for you. Who am I to judge?

There is no “one size fits all” treatment for hypermobility. It’s impossible to make the best choices all the time. There will be times when the decisions you make will negatively impact your health, sometimes they will be medical choices and sometimes you’ll go out for dinner with friends and pay the price the next day. You have to remember that it’s your health and your choice. You’re the one that has to live with the consequences, so don’t let your judgemental Aunt Judy upset you with her comments about how one day you can go out for dinner but the next day you can’t even shower. Fuck Aunt Judy. It’s so important to remember that sooner or later we all stumble because EDS is not a peanut allergy. If avoiding one thing meant our symptoms were not triggered, we’d sure as shit not be doing that thing because it ruins our lives. I know that I’ve consented to every procedure and taken every drug that’s been thrown at me and disappointingly, more often than not, they have actually made me feel worse. But finding the right combination of treatments is my holy grail. There is a balance to be had, I just need to find it.

Life can be really, really tough. Life can also be fun and happy. When it’s tough, it can be hard to remember that the happy times that are just around the corner. Similarly, when it’s a happy time, it’s a challenge not to let the anticipation of the crappy times taint your nice day out. You just have to pace yourself, not go wild, and accept that some days you’re just going to wake up, take some drugs and go back to sleep in the hope that the next day is less horrid.

My EDS comes and goes as it likes. It’s exacerbated by many things such as my hormones, quality of sleep, the weather (it’s always worse in winter), activity levels, current injuries, stress levels, allergies, drugs and diet. I’m slowly learning to accept that having a spicy, fuck off curry now and again, it benefits me more than it hurts me. I just have to do it when I’m either already feeling like crap and there is no more of me to break down, or when I’m feeling tip-top and can handle a bit of reflux and feeling yucky the next day. Curry makes me happy.

It takes a while, but once you start to understand your body, you can start to have fun again. There will be weeks and even months where nothing is fun and everything hurts, but they come to an end, or at least ease off, eventually. I wish I had any sage advice on how to cope with these tough times but I just tend to ride them out with Netflix, comfy PJs and lots of cups of herbal tea – being dehydrated really makes everything worse. I don’t blog on those days or weeks, I don’t do much really. I’m sick. You wouldn’t expect someone with the flu to do the ironing – so give yourself a break.

Basically, it really sucks sometimes, but at other times you can have fun with the lovely people in your life. And if it gets too much to manage, just remember that there are people who love you that would be irreparably damaged if you did something silly or jumped off of something high. When it feels impossible to go on, keep in the back of your mind that if you stopped being on planet earth, you’d just be shifting the burden from yourself (an your illness) onto those who you love by leaving them miserable and feeling hopeless. And THAT little nugget of a guilt trip has kept me on the planet on more than one occasion – and I’m so glad it did. Because things got better. It’s probably not psychologically good advice, but it worked for me.

Nigel would miss his nugget supplier lady-human if I wasn’t here…

Everything gets better, then it gets worse… but it’s easier to deal with when it’s been better for a while.

Ren x


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