My EDS Journey- The Puzzle starts coming together with some PoTs – Pt3

During your twenties your life goes through massive changes, regardless of having a chronic illness or not. People go travelling, finish college, move away.

I was kind of stuck in a loop. I had a constant personal limit that was set by a diagnosis. I could only go so far without crashing. I couldn’t be away without medications. I only felt secure when I was near a hospital.

In your early twenties no one wants to be tied down, especially not to an illness. So I watched with sadness as every one seemed to move on to worlds away.

I didn’t share this illness with anyone. There were no online support groups then for middle of the night reassurances. I didn’t even regard myself as an ill person.

But I regarded myself as an inadequate person, incapable of my dreams and ambitions. Incapable of the heights my peers could reach. Although I never let that show.

I got on with things, I didn’t tell people about my illness but I still struggled. My joint pains were still an issue. Especially my hips and back. I was still suffering from dizziness and headaches with rarer black outs, but they did still happen. I don’t know how I hid things so well then.

I let it go because over all I was so much stronger than I had been the previous years.

The muscle weakness, stomach issues and fatigue had improved. I thought, maybe that’s all the improvement I would ever get. This is my remission and hopefully I would never take a step back.

I still thought at the back of my mind what if? What if it got worse but I’ve always been good at detaching myself from the stark reality of the situation at hand.

After my pregnancy at 22 I never properly recovered. I don’t want to go into the details of pregnancy but let’s just say it was high risk and not one bit easy on my body. I could never have a natural birth. It took a long time to recover after.

But lucky me I now have a beautiful happy 10 year old son.

At 22 my joints were a mess. Not only were my hips and big joints popping, my smaller joints too. I was back to being in chronic pain with severe muscle weakness again.

Then these severe bouts of dizziness and headaches started also.

You think I’d have learnt my lesson from the last time, but no I pushed myself to my limits again and I went back to work part time. My job as a Beauty Therapist really was too physical to carry on. Every evening my neck would have searing pain and the headache at the back of my skull would make me throw up.

My hands would ache so much that when after work I would go to change the gear in the car my wrist bones would pop out. I felt like I was back to square one only it was worse.

I decided to go back to college to retrain in something else. I chose Science and I don’t know why as I thought it would be less challenging on my body. Only two months in I started to have blinding black outs again.

In the October of that year I was admitted to hospital after severe headache all weekend with vomiting and blackouts.

There is a consultant in my local hospital that is a friend of my mothers. He has always been interested in my case and would always ask my mother about me when ever I was admitted as an inpatient .

This time he said “Zondras so unwell I’d love to get involved to try help I really think there’s more going on here” Of course we wouldn’t say no and he took over my care.

He has an interest and treats patients with PoTs. He came and spoke to me about it and told me he wanted to perform a tilt table test on me.

When I had the tilt table test it was so tough. I’d been again stuck in a hospital bed severe muscle weakness but with a headache this time and trying to get through this test was tough. I’ve been through so many of them now I know what to expect.

But sure enough I was a certain case of Postural orthostatic Tachycardia Syndrome. This is when your heart rate raises by 30 beats per minute on standing and continues to rise. It causes dizziness, headaches, and blackouts.

Definition of PoTs – Dr Aaron De Shaw

So yet another puzzle piece to fit in.. Another diagnosis to describe another bundle of symptoms and another prescription of medications to try to help.

It took awhile for these meds to settle in my body and take my heart rate down. It was a tough few months personally, physically, emotionally but they started to work thankfully. I started to get some improvement.

When people around you are so used to you being a certain way. They know you have something wrong but you’ve hidden it so well. As soon as a chink shows on that armour they can’t cope. They chink it even more by how they react. They are used to seeing you so strong and independent that this is not the person they know. It can cause you to lose people as they back away from that weaker person. Those people are so damaging when you are ill as keeping mental strength is so important to keep physical strength.

I started to improve with my pots symptoms in 2010 But my dam hips would not control themselves they kept popping out. My wrists, my neck anywhere there was a joint.

One day while I was trying to awkwardly put fake tan on my back out popped my collar bone.
I say that so casually but oh God I’ll never forget that one. I just dropped to the ground straight away from the pain and sensation. I’d wake back up, feel it again and faint. It was the most unreal sensation every. It eventually popped back in

My stomach is even turning thinking of it now. At my next clinic in the hospital I told the consultant there and she said there is no way this could have happened unless I was in a car accident.

Now I’ve EDS I know this is what happened

I embarrassingly told her I was just putting tan on my back but the bone was definitely coming out of my chest I kept passing out because of it. That my hips pop out all of the time but the sensation is not like that.

I explained to her all about the joint pain and the popping joints. At this stage I was waiting 3 years for another rheumatologist referal.

She wanted to test me for lupus. I don’t know why but I just was like “lupus? I don’t have lupus”. I was right I didn’t have lupus and that was it back to trying to ignore all these joint pains again

One night everything changed perspective for me. I was in hospital and I was private messaging my friend Amanda on Facebook, who had vascular Eds.

She had heard about my latest pots diagnosis and told me she knew lots of people with pots as a lot of people with Eds had pots which she knew from various groups she was part of.

We had went to school together and both suffered symptoms but not all the same. In fact Amanda had quite different symptoms than me but she knew about my myasthenia gravis diagnosis and I about hers.

We did have a few things in common one being problems with our hips.

Amanda had the most life threatening form of ehlers danlos syndrome the vascular type.

She told me there were other types. Although I followed her journey I didn’t know that I didn’t actually know much. She told me push I should push to see a rheumatologist.

I’m always one to detach myself from things I just don’t want there to be anything wrong with me at all. So I detached again.

A month after this hospital admission and my chat with Amanda she passed away from complications with VEds.

It was such a heartbreaking loss. She was only diagnosed the previous year and had been kicking ass as far as we could all see.

The unpredictablness of the condition is so terrifying and terribly sad.

Amanda and I

It took months before I did see a rheumatologist. Still on a waiting list for over three years, I went privately armed with my medical notes, tests results ect.

I hated paying money to doctors again after all we had been through but if it’d help my hips it might be worth it. I was hoping to get some type of pain injection or something into the joint as I heard this is what they do. I was honestly worried I’d arthritis in my hips as no one had been looking at them.

The day of my appointment the Secretary called us and asked us to come in early, so in we got all ready and waiting.

When we did arrive she told us the doctor wasn’t ready and would we go away again and she would call us when to come back. She told us there was a coffee shop down at the end of the hill.

We asked her how long a walk as I couldn’t walk far and she said it’s five minutes here and back.

I hesitated first and then thought ok  I’ll do it, I’ll walk that .

Ya she was totally not judging it by my standards. The hill was a Cork hill which means it’s practically a vertical slope. So I bitched and moaned all the way down “why did she call us in early” “surely she’d know I can’t walk this” muttering away to mysekf.

We reached the coffee shop after what seemed like a hike down Croagh Patrick to me and when I got inside I actually fell over. My legs went from under me.

We had just ordered our tea and were being served when the Secretary called and said the doctor was ready to see me.

At this stage I was using all types of choice language and I still had to face getting back up that hill.

It was a hot day and it was awful I really thought I wouldn’t make it back up. My heart was pounding through my chest, my left hip had already come out on the way down. Honestly if anyone walked past me they would have thought I was having a heart attack.. I think the bitchin and moaning got me up that hill.

When we were coming into view of the doctors clinic he was standing outside watching me walk.

Oh we weren’t off to a good first impression.. Myself and my mother both clicked that he was testing me. He wanted to see me walk and he wanted to wear me down.

I was called into his consultation room and we were right he confirmed this is exactly what he was doing and he noted how turned in my leg was. I told him it’s because my hip pops out and leg turns in. This started the conversation that went into an examination, tests, medical history.

At the very end he said words I thought I’d never hear said to me “I’ve no doubt about it you have ehlers danlos syndrome”

Boom just like that. He said you’ve probably never heard of it I told him unfortunately I had.

I think it went over my head a bit but it also clicked when he went into more detail.

When you have every symptom and more

All I could think about was Amanda and how could I tell my friends who were grieving.

In the car home that was all that was in my head. I wasn’t even thinking about me what the implications were or that this could be my final puzzle piece.

I just worried about my friends and telling them. I know I sent a message to one in the car as I couldn’t say the words out loud. I thought about the time I text her coming home from cork another time but telling her I was pregnant. Well her guessing really. How different these messages were and how much differently they changed my life.

That evening when I got home I had a few friends over. We were ordering take away and watching something. I decided to bring it up there and then as I had them all there and I wouldn’t have as much courage as the day I was diagnosed.

So I told them and nothing. No one really said anything. I know people can’t understand how these things work or what to say but I expected something. Something that never came.

That was it really. I went on with life and just didn’t tell much people after that. Nothing changes I kept going in college full time like I was before I put no system in place to make it easier on me.

I suppose I was lucky to have friends and people around me who at least could say ehlers danlos syndrome and unfortunately knew about it for all the wrong reasons.

I had a circle who understood what condition I had and that proved to be invaluable when Eds started to slowly invade and take over my life.

It wasn’t going to let me continue to pretend, it wasn’t going to let me ignore it anymore. It was going to hit me and it was going to hit with its full power until I was a former shell of myself.

You learn to stay strong

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