So, here we go again, yet another ‘the truth behind my obscure illness’ a ‘hear my story’ blog post. You’ve probably read 100 of these.
This isn’t the same, at least its intent is very different.
The purpose of this is to change my perception of my reality.
Since i was diagnosed i was confused, a bit lost, i thought it would be a minor inconvenience at most. I actually used to forget i had it, id only bring it up at parties, id suddenly remember and think ‘oh yeah, im more unique than i once thought, hurrah for the wonder that is me.’ It used to sound impressive, people’s reactions to it were different because my attitude towards it was different. This was around ten years ago. I can’t even imagine, let alone remember, how that felt. I’m still grieving.
It was interesting to read online about it, i had maybe 3 out of 50 symptoms. I just felt unique. It was like when all my friends started their period and i felt like the lucky one because i barely felt any pain, but just like this, it soon crept up on me.
my diagnosis was strange and abrupt. I felt pain in my hip, or my right femur bone.. or my coccyx, i still don’t know. And after complaining for ages about the pain to various GP’s i got referred to the hospital to have a scan, they found nothing unusual, then i was plonked down on a bed, the doctor grabbed my wrist and touched my thumb to my arm (i didn’t know i could do that) gave me my diagnosis, with little to no information, then sent me away, i felt like an injured deer in headlights.
i met a girl online, tumblr i think, she was telling me all she knew about the illness and i suddenly felt in the dark, she was so prepared she knew how to take care of herself, so much more than i did. i felt so lost and almost angry.
I can’t remember exactly how old i was when i started to feel pain, i remember the right knee used to pop out-of-place when sitting by the fire next to my Mum when we went to my Aunties house. Me and my Mum gravitate to fire places and radiators cause were always cold. I remember feeling very resentful i couldn’t do that anymore without risk of injury. It was the most pain id ever felt and id sort of done it to myself. Just by sitting down. I grabbed my Mum’s arm and i didn’t know what to do, i just shifted and it popped back in, i was a bit scared. I’ve done it 700 times since, it never gets easier.
i used to sit in a funny way, i used it as sort of party trick, it looked so bizarre like i was from the circus. its hard to explain without actually showing you but my legs were like two right angles opposite each other. People would try to do it and failed every time. Hearing people say ‘Woah! how do you do that?!’ did make me feel strangely special. Years later, id see photographs of people’s children sitting in the same way on social media support groups with warnings like ‘ do not let your child sit like this’ or ‘if you see your child sitting like this get them checked out asap. I can’t get into that position now without hurting myself.
So far, in the story anyway, my right knee occasionally subluxing or dislocating without any warning whatsoever was the only pain id experienced. It was scary though, i knew deep down id would get worse. i still do.
my first physio session felt slightly impersonal. There were people there who’d been in-car accidents etc. No-one with long-term illness’ or chronic pain, maybe two, but i didn’t feel i should be there. I did have one to one physio consultations before i got referred to the classes which were once a week for a few months. I was given splints and socks that i still wear now. I was told about all the things i was doing wrong like the way i put on my shoes, the way i sit or sleep, even the way i walk. Basically everything you do without thinking, i now had to think about.
My first physiotherapist asked me that i did for work, at the time i was still in university, im finding it hard to remember exactly what i was doing or how i felt during that time… that’s the problem with this, i get brain fog and forget big chunks of my life before the pain really set in.
University was one of the best things i ever did. I met so many amazing people who are my life long best friends. i matured so quickly it was even visible to me aswell as my family, and my now ex boyfriend. During this time i started taking my illness much more seriously, i started on the serious pain medication and was doing physio exercises in my bedroom twice a day, or as much as i could. i also started asking more important questions about the illness, they told me it’s very possible i have an enzyme deficiency. Meaning i am a non-responsive pain patient. Its called a CYP-2D6 deficiency and it basically means your body doesn’t respond to the analgesic properties of opioids, meaning you don’t feel the affect of pain killers, it’s a genetic disorder. It could be responsible for my eczema, brain fog, headaches and some of my joint pain.
After reaching this conclusion i was prescribed some tramadol and, finally! something that worked. i could function again! i felt like i could get on with my life.
A chronic pain patient with the inability to feel pain killers, thankyou universe!
Around this time i started getting mentally drained because of it. I had to start cancelling plans, letting my friends down, I’d never had to do this before. The guilty feeling started and it hasn’t stopped since. Of course, I have the best and most caring and loving friends, it would never ever be a problem because they know it’s not my fault. It is the way it makes me feel, the bad taste it leaves behind. Like its controlling me or its winning. Stopping me from having a good time. Having to do this whilst at Uni is especially hard since the time with your new-found family is precious and limited.
I got my first job in a photography studio working as both a photographer and an editor, so sometimes I am sitting at a desk and other times on my feet all day. Not one is better than the other really. But i was never about to let my condition affect the beginning of my career. It started to get quite painful.
I was weeks out of uni, not even fully unpacked and id got a job in my industry. I was so proud and very motivated. Id grown and matured so much during university and the pain endurance was a big part of that. I was working four days a week and doing freelance work on my days off. I have one rest day a week and that seems to be enough. I say rest day so casually because it comes very natural to me now, but, i basically get up a couple of hours later than usual, have a bath, take my pain killers, get into clean pj’s and get back into bed and binge on whatever i fancy at the time. I have to do this to sort of refresh my body and mind. Some days after a heavy week my ankles swell so badly i can’t walk without limping quite badly and that’s when im at risk of dislocating something.
Pain meds are an issue because they suppress your hunger yet they make you very sick if you take them without food. They also keep you awake. So to make up for that i was prescribed muscle relaxants to help me sleep and try to cure the tension caused by my literally tensing my body up when im in pain. But those are awful and mostly make me feel sick and give me.. interesting nightmares.
I started adjusting my habits, looking after myself a little better, eating better, to enhanced the way my body reacts to the pain medicine. I had another injury a few months into my new job, i opened a very stiff fridge door and dislocated my right shoulder tearing every ligament in the process, i managed to knock it back in myself but i was in a sling for about a month. I then got referred back to physio for a third time.
I asked to see a rheumatologist. Just to get some more advice and information. the appointment was short but we covered quite a few topics contraception, diet, habits, work, personal life, how i relax, even going out drinking, etc.
Turns out it’s a genetic condition, one of which no one in my family has, it must have skipped a few generations, or its a genetic mutation, it kills me to see how much it hurts and confuses my parents when they see me in agony and they can’t help.
Nothing, since all of this, very notable has happened since. I had to call, or rather my boyfriend called 111 because id ran out of tramadol and couldn’t get into bed, i just cried out of frustration. I was able to see a doctor at 2am and got some muscle relaxants.
I’m sure it wont be the last time i have to do this, the harsh truth is, in order to not injure myself, i have to be very careful, don’t move too much, don’t dance, don’t have too much sex, dont lift anything heavy, get everyone else to do things for you, don’t have too much fun, i dont want to live like that, ive gone for ten years wanting to forget i have this thing, scared to become addicted to my pain medication.
But that’s no way to live.
I want to leave some marks while im here, bloom, take up space.
I refuse to grieve for the girl i used to be before the pain.
Damn right im going to dance, ill run a marathon if i feel like it, ill tear off my knee and wrist splints with reckless abandon.
All in all, i have a great job, im young, only 25, i have my whole life ahead of me, I’m already fighting the odds. I have a great personal life, a very supportive partner, family and friends. I tried to write this in the order of when i first got diagnosed, but its difficult with the amount of brain fog i experience,
It’s been ten difficult years, I can safely say that it’s getting progressively worse, i feel it every day, its terrifying, but i am taking photographs of it, im writing in my blog about it, ive done university projects on it, ive made awareness videos about it, im writing about it right now, as much as my heart is pounding and im trying not to cry, I’m doing it.
It’s not going to beat me down.
I may come home from work with swollen ankles, my trapped nerve in my back hurts so much im crawling to the sofa just to collapse, cry and fall asleep only to do it all again the next day.
It doesn’t come with an instruction manual, I’ve been sent away by doctors, some have said my pain isn’t real, some have said its irrelevant, some have said to suck it up, some have said ‘you don’t look ill‘ or ‘you look fine to me‘ ‘some have it alot worse than you’ ‘she’s probably doing it for attention’ ‘how can she dance like that if she’s so ill’ .
I’ve been told to think twice before considering to have children. I might never recover. It might even be impossible.
I wake up every single morning to pain but im not letting it stop me.
This is my reality.
- Ehlers Danlos Syndrome type 3
- Non-responsive Pain Patients with CYP-2D6 Defect