My EDS journey -The start of the road pt1

Ive decided for May I will post different chapters of my whole EDS journey. It needs to be broken into segments as its a long ol tale.

May is EDS Awareness Month

May is Ehlers Danlos Syndrome Awareness month or The Ehlers Danlos Syndromes as they are now known since March 15th 2017.

I dont know why that makes me laugh when I think “I’ve got the Ehlers Danlos Syndrome “.

It sounds humourous to me but I’ll tell you one thing for sure, it does not have a sense of humour.

Awareness means different things to different patients. Some just want their friends and family to understand what living with this condition is like. Others want to educate their doctors so they can try get better treatment.

A lot of awareness needs to be raised among the whole community starting with the patients who need to be self informed , to the community , Teachers , GPs, Physios, Consultants and our family and friends.

This is so vital for the better care of patients especially those with rarer forms of EDS and those with secondary issues to EDS of which there are many.

I could sit here and explain to you what EDS is but a simple google search will tell you all about it in either simple terms or in medical terms, however in depth you want to read.

I could list all the symptoms but it would fill up this whole page and you’d be left thinking really? Really? All of those Symptoms, how are you even writing ?

Many symptoms of EDS

So ill tell you what EDS has done to change my life , because I’m not who I had the potential to be, I’m not who I used to be , I’m not who I wanted to be or I’ll never be who I thought I’d be.

But I am still someone.  I’m still an individual outside of this illness.

“It came in like a wrecking ball, I never hit so hard Before”🎵🎵

Sorry sorry, distraction is definitely not a symptom but me deflecting from the seriousness of my condition is a thing I do.

My mother said I was an issue since the day I was conceived . I was leaning on a nerve in her back and caused her pain for 9 long months.

My birth wasn’t exactly an easy one either, so I entered this world with a medical drama surrounding me.

Definitely a sign of the life I was going to lead.

My hips were out when I was born, something we now know is called hip dysplasia. They would send my mother with me for an xray and some times my hips were out and then they’d be back in.

Already at that age my hips were dislocating. Surprisingly I was a very quiet baby who slept through the night with no other issues until I passed being a toddler.

At age 4 I was diagnosed with migraine. I remember the pains in my head that made me throw up. I remember taking pink tablets for it to help and laying in dark rooms. I also started to suffer terrible from dismotility in my bowels which was leading to many a hospital stay.

I was suffering from this at age 4

My hospital  chart was growing. I wasn’t a ‘sick child’ as such, but I remember thinking that feeling pain ,getting ill and having headaches was normal for everyone.

I was active , I danced, I played music ,I sang. I was never athletic but always quiet adventerous, climbing trees and just playing outside all day, a lot of times with a cast or a sling on my arm

I do remember when I used to run, my knees would just go from under me. It was always such a strange sensation. At nights I used to cry with pain, especially in my legs.

My mother would soothe me and tell me its ok they were just growing pains. I couldn’t understand why it hurt so much to grow. I’m still only 5ft 3 like.

I suffered lots of sprains and broken bones. Now broken bones aren’t a part of EDS. I am being genetically tested for another connective tissue disorder that causes broken bones without trauma in childhood. After my fourth broken wrist my mother said I just can’t take you to the hospital again, they will call social services

She wasn’t being funny. It was a genuine concern. I was showing up with broken bones I attained from just running into my front door. They would be only true professionals to question why.

Well I wish they did investigate the reason why a bit more , but no one ever did question why a young girl was injured so easily , was suffering severe migraines, popped out hips and stomach issues ect. Maybe then I might have got an early diagnosis which is essential and is why awareness is so essential.

What started happening next at about age 11 is I started having blackouts. Out of no where I’d get dizzy, I’d feel like I couldnt breathe and sometimes I’d just end up blacking out.

There was no predictability with these blackouts they would happen anywhere anytime and because of any stressor.

Again back to the hospital back to doctors. The answer was I was hyperventilating and to use a brown paper bag when I felt that feeling coming on.

So we took their advice and thats what I did. Of course it didn’t help. I wasn’t having panic attacks. I remember starting secondary school with my brown paper bags having to get up leaving class when it was too hot , when we were standing too long .

I’ve got postural orthostatic tachycardia syndrome no wonder this was happening all the time.

Ill never forget all the times teachers made me stand for a full double classes , an hour and a half in one spot in a hot prefab. I’d end up not being able to breathe properly or I’d end up blacking out. They’d think I was doing it to get out of punishment and get punished more. The other students would be shouting “Miss she has panic attacks she needs to go outside” but really all along what was wrong was my heart was beating too fast , my blood was pooling and my brain starved of oxygen then my body would black out from loss of oxygen to the brain.

When I think back now to how unwell I was every day through school , all the headaches everyday it does annoy me , the irreparable damage that was done.

I was once punished and put in between a space between two doors and I blacked out. Its madness looking back.

This is why awareness is essential for early diagnosis. I was put through that because I’d no diagnosis. I was ill all that time and treated that way.

I was reminded by an old classmate recently something I’d forgotten , how they all (friends in class) would use this to their advantage to get out of class. They’d say to the teacher “oh miss Zondra can’t breathe can we go outside with her ” No wonder I had so many helpers

When I left school in 6th year everything kicked off in a major way. I started to suffer from extreme muscle weakness , I’d lose the use of the left hand side of my body. The headaches were still blinding I was still blacking out.

But worse of all I wasn’t able to walk unaided. My left hip was popping out and my left leg had become so weak I needed a crutch to walk around.

I was 17.

We went to every specialist you can imagine, cardiologists, neurologists, gastroenterologists trying to find some help for the problems I was now not just feeling but was suffering from and were now effecting my life

We would go to Docs nightclub in Limerick at the weekend and I felt like an old lady after dancing my hips were in so much pain my legs so weak , my heart racing.

The next day I was a total write off while all my friends could just continue on like normal and they’d have even been drinking the night before too.

I had a boyfriend at the time too. Who was and is a lovely guy but he said one thing to me one night a comment he probably never realized. I was on the couch my whole body felt like it was in cement from my muscles being locked in spasm. I couldn’t move , like literally couldn’t lift myself up.

We were meant to be going to something , like a pub to meet friends, something insignificant but at that age socializing is your life. I couldn’t go, no way could I move and he said I wish I had a normal girlfriend.

It was only then for the first time I really realized that yes I wasn’t normal, this wasn’t normal.

I was a slave to my body, it was dictating my life and I didnt know why. I was still a teenager at 18 and I deserved a life why couldn’t I get that.

I finally got an appoinent with a top neurologist who said you definitely dont have fibromyalgia , my MRI didnt show MS but they still weren’t ruling it out. So still no conclusive answers.

When you 18 not able to keep up, using walking aids , taking pain meds its very hard not having an answer when someone not very tactfully asks “what’s wrong with you?” “What’s up with your leg? “. Saying i had a neuromuscular issue never really satisified the curiosity.

I then went to see a Rheumatologist really hoping I’d get an answer and some help.

What he said I’ll never forget. He said “we don’t know exactly what’s wrong with you maybe its not fully presenting yet, you need to go and push yourself as much as you can until you collapse and you are brought into hospital in an ambulance and they keep you in until they figure out what’s wrong”

That was it. €150 for that sentence.

Well myself and my mother were highly put out after paying a consultant to tell me to push myself until I’m in an ambulance, was he mad? We were fuming!

We had spent a small fortune on doctors and this is the answer we got.

But do you know what, in the end this is exactly what ended up happening. He was actually right.

I pushed and pushed myself working and I collapsed and ended up in hospital where I started on a long road of the start of many jigsaw pieces to answers.

As I’ve said this has been a very long road so I’ll continue on the next part of my journey in part 2

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