Things have been difficult. I don’t like to openly admit that, but there’s no point trying to kid around. At the moment, Ehlers-Danlos is winning. I’m finding life hard and I’m finding the constant battle to stay well exhausting. Chronic illness is not all rainbows and sunshine. It’s tough. EDS is being in so much pain, you don’t know how to carry on. It’s receiving more bad news, when you think that you’ve already received all the possible bad news and not knowing how to digest it. It’s endless hospital appointment after hospital appointment. It’s all the waiting rooms. And then the crying in waiting rooms. It’s all the medical professionals, with their varying opinions over what’s best and no one ever really agreeing. It’s crying until you’re sick. It’s being scared. It’s fearing the future. It’s not knowing who you are anymore and not being able to find yourself. It’s questioning everything.
EDS isn’t a terminal illness but there are times when it feels like a life sentence. Because I’m not going to get better. The past few months in particular have been hard. I can cope with wonky joints and the fact that they dislocate without warning. But EDS isn’t only wonky joints. My kidneys aren’t working properly and that has been the case since May. I’ve had a near constant kidney infection which is not shifting for anything, despite all of the antibiotics that I’ve been on. I’m scared that this is going to result in long term damage. So far all of the scans have been inconclusive which makes the situation harder: green pee isn’t normal, urine retention leading to hospitalisation isn’t normal and peeing blood isn’t normal. But we don’t know why this is happening.
As I have become more unwell, there has been an increase in co-morbidity between EDS and other conditions. I have recently been officially diagnosed with postural tachycardia syndrome (POTS), meaning that my heart rate is erratic and doesn’t respond quickly enough when I go from sitting to standing. This results in blackouts and fainting, which wasn’t a big deal until I fainting and smashed my face and had a suspected fracture in my cheek bone.
There have been referrals going on in all directions and I’m praying that someone is eventually going to be able to do something to make this situation a little bit better.
Don’t get me wrong, despite how tough things have been, EDS does continue to teach me valuable life lessons. My friends are invaluable, especially friends who have EDS or other chronic and long term conditions. They understand and that is a huge thing. Friends with EDS are like gold dust and I won’t ever take their love, support and comprehension for granted. There is no such thing as a TV series which is too trashy (I am STILL all over Love Island). Likewise, there’s no such thing as too much Netflix. Netflix and chill? Nah, Netflix and kittycat cuddles is what I’m all about. Pyjamas are not just for sleeping in. Spoonie friends judge each other on their pyjamas, they are a huge deal. Suddenly, having a full set of completely working organs is a luxury and nothing to be taken for granted. When a medical professional has heard of EDS and takes you seriously, you want to bundle them up and take them with you, wherever you go. Don’t say that out loud though, because it creeps them out. Especially when they are still students. Rest days are important. It’s not lazy, the reality is, sometimes EDS means that you can’t get out of bed and that’s okay. Chronic pain doesn’t disappear and that’s the thing about pain: it demands to be felt.
I think what I’m trying to get across here is that the nature of invisible illness means that there is a lot more going on than meets the eye. Just because I look okay doesn’t mean that I am okay. Looking okay still means that my body is constantly fighting to keep going. Looking okay still means that I am in pain, tired, fed up, emotional and scared. I keep going because I have to. The only other option is to give up and submit to illness. I’m nearly 25 and I’m not ready for my body to give up yet, although yes, of course there are days when my brain wants to give up. But the hard facts are that I’m not going to get well soon.