My EDS Journey- The very first answer. Pt 2

Would I ever know the day when this illness would raise its head so high that it would push me down so hard that my body would give in and I would just crumble?

 Did I even think it would ever happen?  I dont think I was ever prepared for what lay ahead.

I was working everyday as a Beauty Therapist, a very physical job. I took heed of that medical advice to keep ‘pushing myself to collapse’ , infact a little too much.

I decided if they really didn’t know what was wrong with me then why was I taking all the medications they gave me. What was the point of medicating symptoms with no answers? 

So I just stopped taking all prescribed meds. I threw myself into my job and never stopped myself physically even at times when I really should have. Something had to give.

I remember mornings driving to work , I would drive pass the train and bus station. There would always be traffic there for a few minutes when I would be stopped at the lights.

I couldnt tell you how many times tears streamed down my face as I sat there in traffic after a night of no sleep and I was just so fatigued and worn out. My body a rag doll. 

I would stare at the station and lots would run through my mind. Its amazing how much you can think of in just a few moments. Your mind can conjure up incredible thoughts in seconds. 

Artist: Sam Taylor Johnson

I’d think of parking up and just getting whatever money I had and going on a train or bus. I didnt care where to, I didnt care what I would do at the end but I needed to run. Run and get away from this. I was truly sufferring at this stage. I was just turning 19.

It happened one morning when I was opening the salon up alone. I dont know did I call someone, my boss or my mother, or did one call the other but they found me in a heap in our staff room.

I was literally a heap, a dead weight. Like the rag doll was now made of lead. My mother said I wasnt responding and the two of them put me on a chair with wheels, wheeled me to the car and with trouble lifted me in. She says she still doesnt know why she didnt just call an ambulance.

With me still unresponsive in the car she drove to the doctors. When he asked for me to come inside she told him I couldnt. My body would not move I was unresponsive. The doctor came to the car took one look and said call an ambulance.

At this stage it was faster for my mam to drive me to the hospital. I dont know, she must have been running on adrenaline at this stage now as she still says why did she even bring me to a doctor why didnt she call an ambulance straight away.

Hindsight is a great thing and panic makes us react in a way we cant imagine. I was like I had a stroke. My left hand side of my face was completely dropped. I lost my speech,I could not move any of my limbs nor could I respond.

I have no recollection of at least the first 24 hours apart from all I’ve been told and have retold for you here.

 I do remember my nana being beside me and the nurse brought in a commode. My nan said quite adamantly as she was shocked “she cant use that she cant move”. The nurse said” what do you mean she cant move whats wrong with her? of course she can move”. My nan was so cross with her and explained they didnt know what was wrong but I could not move if I could I woud walk I wouldnt even use a commode. 

My fabulous nan was always by my side in those days

She was completely right though and it is insulting. Why would you as a teenager choose to urinate in a bed pan or commode if you could get up and walk. There’s nothing more humiliating at that age. 

I found this a lot as a teenager and in my early twenties even with a diagnosis of a serious illness. I would always be questioned when I said I just couldnt get up or move. The’d just say” “you can! get up” it was always disbelieved. Until Id attempt to and my legs wouldnt go under me from severe muscle weakness or Id black out from pots.

But as an adult late twenties early thirties this is never questioned. Even when I want to move and feel like I can I am not allowed. 

One time not too long ago, I kept getting up walking to the bathroom as it was only a few steps from my bed. The nurses were so adamant I was not to get up out of bed walking they put an alarmed mattress on my bed and the rails on both sides so I couldn’t get out without them and a wheelchair.

Big difference from “of course she can walk” I laughed so much when I was trapped in my bed, on bed arrest

Im sorry ive gone off on a tagent.

This is a major part of my story. I spent a month in hospital just like that. Like the Rheumatologist said, ‘you will go until you collapse and they’ll keep you in until they figure out whats wrong’. I suppose the statement he made that highly offended us was turning out to be right. 

Thats exactly what they did. I drove myself into the ground so much they couldn’t discharge me I was so ill so they had to keep doing investigations. 

It was a process of elimination from strokes to brain tumours but my consultant was pretty sure it was a parapeligic migraine. This is when you suffer a migraine so bad it paralyzes you.

What didnt fit was how long the episodes of parlyisis were and the drooping face and speech loss was lasting. 

One evening late the registrar came to me while I was with my mam.

He explained he had seen a condition once before and he had read through all my notes and everything seemed to fit with this.

He wanted to test me for it and with permission of consultant do it the next day. Of course we said yes we were desperate for answers.

So the very next day, if you can imagine a can of coke out on a sunny day. Well that was me and the wasps that swarm around it are the Doctors, Registrars and Student Doctors, all armed with notes, folders and testing equipment.

It was mostly a blur.. I remember having to hold my arms in the air until I physically couldn’t anymore and being made run not walk up a stairs. Remember I was paralyzed on the bed before this, now I’m running. 

That night again the same doctor came back to me.. He had such a lovely bedside manner and treated me and my mother so lovely. I was so shattered after such a long day. 

He told me my tests were positive and I had a condition called Myasthenia Gravis. He told me there was a medication I could take that would help me feel better. One taken every four hours, I had to be strict with that.

Some symptoms of Myasthenia Gravis

They were giving me a few more days in the hospital to get to used to the new medications and then discharging me. He told me and its advice I still use to this day, not to Google anything. It was unique to me I would only read worst case scenarios all the time. 

The next few days I really started to pick up on the medication, especially with strength in my legs, standing and walking and overall strength. 

I was discharged with a name, a long term illness. An answer? Finally an answer. Could I relax? 

It certainly felt like it at last. I was 19 I was feeling positive that these tablets would fix everything and this was the end of everything I had be going through. 

I was so innocent looking back that I thought it could all be so simple. 
Nothing’s that easy with EDS I was going to learn that ! 

2 thoughts on “My EDS Journey- The very first answer. Pt 2

  1. Hertbreaking and uplifting in equal measure. A great piece of writing, you give voice to the many who have been made to suffer here due to complete lack of medical knowledge but even worse, the complete lack of empathy by so many in the medical field


    1. Thank you for taking the time to read and reply Margaret.
      I’m glad and sorry it resonates with your situation too.
      May someday we all get the proper treatment and services we need in our own country.
      Much love x x


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s