My Invisible Illness ft. Tramadol: The Ehlers Danlos Series

This post was inspired by Invisible Illnesses Awareness Week (15/19/17 – 21/19/17)

If you go on my Instagram, you will see accumulated photos of a happy and healthy 24 year old. Some, may even think I am luckier than most – with multiple pictures captured in different destinations.  Travelling whilst you’re young, resonates through many millennials DNA– whether it be for the sex, partying or general experience but that isn’t the case for me. There was mistakes in my genes.  I trot off to see the world on the rare occasion I am well.  Fearing one day it will be impossible.

“Instagram tells one story and now I am ready to tell you another”.

Differentiating my left from my right or retaining balance has never been easy. A simple task – walking down the street, when I make it out the house that is — turns into a game of dodgems or a dance off with a complete stranger as we try to pass one another.   Each time, piercing eyes glare towards me. Sometimes a friendly one, like I am a lost tourist. Other times it’s a look of annoyance, alongside muttering. All I can do is apologise, after all I don’t look sick.

Concealed by clothes and a face caped on of make-up and long hair, how could I?

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The truth behind the make-up”

As I stand naked I am confronted with an extremely different version of myself.  I see a painting with various shades.  Hues of red, green, black, blue and purple. All powerful colours, yet a battered body greets me, due to my lucid skin.  A body that looks of one of self-harm or domestic violence.  Panic flowing through my veins, that someone will catch a glimpse of this picture.

How do I explain this is a body of Ehlers Danlos Sydrome III (Heds)?

Even to G.P’S, which need it to be spelt as they open Google.

 

 

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Need explanations of Ehlers Danlos Sydrome? Click here


Before my diagnosis in 2016, I worked as a Waitress actively using my muscles. However, falling up and down the stairs and dropping to the concrete floor like a ton of bricks, was my signature dish. I spent my tips on creams and ointments, believing the burns, scabs and bruises could be easily erased- I was wrong.

“Denial –the deadliest form of depression”

Imagine, making cup of tea is like running a marathon. Or any movements of your arms or legs makes clicking or crunching noises as your joints dislocate.  Feeling like  like needles are travelling through your body, as fast as lightning.  These are my day-to-day realities. An extreme case of pins and needles, I once convinced myself. Never connecting those feelings to the coloured landscape that covered me.  To other people, including G.P’S I was just a hypochondriac, tired, accident prone and clumsy.

I purchased Tramadol in bulk online and took it a few times a day. It was catch 22.  when I took it I would be dazed – half with it. However, if I didn’t take it the pain would hit me harder within an hour and my awful mood would return…

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“Unsure, if I could survive a quarter of a century, something had to change”.

At the righteous age of 23, my head became too heavy for my neck and I was continuously dehydrated. Unable to work anymore, I couldn’t let some marriages last longer than my life.  I convinced my family to pay for a private appointment with a leading rheumatologist, in basic terms a muscle doctor. I promised to stop whinging, if nothing came of it.  At £300 per hour – it’s not hard to see why.

The appointment arrived one week later. Within twenty minutes I became the Cheshire cat out of Alice and Wonderland. A smile of relief.  FINALLY I had a label, the answer I was searching for. Yet, that label led quickly to change in character. I saw red. Bitterness invaded my mind as I learnt there is no cure for EDS. Not to mention, I had been told, there may be more underlined medical problems associated with it like POTS.


    “The Ehlers Danlos syndromes evil natures

I don’t take Tramadol anymore, because I want a clearer mind, which leads me onto my next point. With EDS, it is never a question of are you in pain, it’s a question of how much.  Yet, the diagnoses are imperative for mine and other patients’ sanity. EDS is like God – some people can’t  believe, what they can’t see.

The thing is – with an invisible illness you have the choice who you tell about the disability.  Some patients view this as distorted blessing, a chance to be normal again. I know I do. From time to time I remain quiet about EDS to prevent being excluded from an activity.  Unfortunately, this usually causes more damage.  As I lay my cripple body flat, speculating when I will walk again; I find myself extending my blacklist instead of the bucket list.


                                              Could you have Ehlers Danlos Sydrome?

If you are double-jointed, have chronic joint pain and suffering with chronic fatigue you may have Ehlers Danlos syndrome. Don’t suffer in silence and head down to your G.P and reach out to support networks.

Coming soon

 An EDS series of Vlogs and blogs welcoming you into Morgan’s world and all things Heds.


Sharing is Caring

I would love if you shared this post to give people an insight of what it can be like to live with Heds.

Have your Say

What do you think about invisible illnesses and how they are perceived?


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Thanks for reading,

Lots of love,

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41 comments

  1. Thank you for sharing your experience. As a fellow zebra, I can relate to much of what you say. My Instagram feed shows the world a pruned selection based on what the world wants to see. The people who really love me know the fuller story. And my acquaintances (and in-laws) keep asking me if I’m all better. Yes, I will be once I get the chance to change my genes, thank you!

    Liked by 1 person

  2. This is such a powerful post. Beautifully written. Invisible illnesses are the hardest kind to have. Social media is great for being able to present the image we want but it hides a lot. You are very strong to share what’s happening on the inside.

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    • Hi , thank you for reading 🙂 I agree and that’s why I held off getting Instagram for so long ! There is lots more to come about EDS which the NHS link doesn’t cover but impossible to include it all in this post xxx

      Like

  3. Such a touching post. It can be hard to come to terms with an invisible illness. I’ve been in the same boat, as I have battled depression for years. Keep your head up girl! You’re amazing!

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  4. Wow, I had never heard of this illness. Thank you for sharing your story so beautifully and honestly to raise awareness. You are so strong. Sending love.

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  5. Such a great touching post, thank you for sharing your experience we haven’t got anyone with invisible illness but i can feel it it’s hard to have. Gotta to pin it and let people know it :)).

    Like

  6. My heart goes out to you. I can’t imagine having to deal with something like that on a daily basis. It’s never happened to me, but I’ve had friends who have struggled with something and no one could tell them what was wrong. So frustrating. You must be relieved to have a diagnosis, but also frustrated with the lack of a cure. Good luck to you!

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  7. I am so sorry. I have no other words than thank you for sharing your story. I am sure there are many more people like you searching for a cure. Your story is inspiring and heartbreaking. *hugs*

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    • Hi, thank you for your support! Yes there are many people looking for a cure but unfortunately many people self-Medicate due to the pain and for intense physio programmes you normally have to be off medication. So it can be a hard battle xx

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  8. Thank you so much for sharing your experience in this post. This is very informative information. I’m so sorry to hear this. I’m happy you are increasing awareness.

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  9. I am so sorry for the pain you have felt with this. You are so brave for being so real and sharing your experiences. This will definitely help someone and I will pray for you as well. Thank you!

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    • Heya Debbie, thanks for reading. Being honest and open is the aim of my blog to really let people in my world including the good the bad and the ugly to really give an insight of how someone like me and others (guest posts) live thanks so much for reading x

      Like

  10. This is one of those cases where I don’t have the words other than to say I am so sorry for what you are going through. Thank you, though, for being so brave by sharing your story and being an inspiration to others. {{{hugs}}}

    Like

  11. I am so sorry for what you have gone through and are going through. Thank you for being so brave and sharing your story. You are truly an inspiration. {{{hugs}}}

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    • Hi Marianna, thank you for reading. I try to be positive but this year the Ehlers has got really bad so it can be tough! My aim is to deliver a honest experience of different parts of my story! And when I am positive to share how others can be x

      Like

  12. Wow, thank you for sharing such an amazing story. Through such struggle is always the strongest and most insightful realizations and it amazing that you are sharing those thoughts with others. You are a very strong person and an inspiration!

    Like

  13. Extremely powerful and informative. I’m sorry you have to go through that. I was very interested in your post because my friend has been told she has fibromyalgia because of her chronic fatigue. She even lost her job when it progressed. But I think she should look into this. Her symptoms are similar to yours.

    Like

    • Hi there, thanks very much. It is possible as they suspect I also have fibromyalgia and I’m being investigated for it at the moment. There is a cross over between the conditions but the main difference is the bladder/ pelvic pain , the passing of blood and infections I experience which I have been told is more fibromyalgia symptoms than EDS. Many patients with EDS have another condition like Pots but not all, but definitely worth her getting this checked if she sees a rheutomologist already or a urologist / gueno (can’t spell) it was my gueno who actually discovered this. X

      Like

  14. Such a beautifully heartfelt written blog. I’m so sorry you have to experience this everyday. A hidden illness is so hard. So hard to have to explain yourself everytime. When people ask what’s wrong with you?. You look fine. If only people were more understanding.xxx

    Like

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