About Me

me

Hi world,

To give you a bit of history on me. I am Morgan, a 24 years old Business Student at Oxford Brookes University diagnosed with Ehlers Danlos syndrome III at 23.

cropped-me.jpgBefore, we start you may want a brief overview of  EDS.

EDS’s are a group of rare inherited conditions that make connective tissue weaker*.

* In some instances, EDS can occur in someone without being inherited. Connective tissue is important to support skin, ligaments, blood vessels and internal organs. There are different types of the condition I will explore in another post. However, all types of EDS are affected by weak connective tissue and loose joints.

Unbeknown to me, my journey to illness began in the womb. Many ask me when EDS will end. The response is morbid. The truth is EDS will end when I die because it is incurable.

If you are one of the rare ones who has heard of EDS, you are probably wondering why I am writing this post. I can’t lie, I do worry each second I will dislocate my wrists or fingers. Yet, I still write.  Typically, my posts will not be this long. I just wanted to be completely honest with you from the get go.

“Although, I am disabled I am not EDS – it is just a huge part of me”.

ME.jpg

It is not unusual for people to see an illness before they see a person.  With EDS, its the opposite.   You are only ever likely to see the illness if you know the sufferer well.. because on the surface it’s invisible.

“People don’t understand when I can’t do daily tasks”.

Due to the lack of awareness of it people have the wrong misconception that I am extremely lazy – even I believed this for a long time before the diagnosis.

“Unlike many other suffers of EDS, during  secondary school I never knew I was different”.

me crab

I made every excuse to get out of P.E because I was in pain but it did not work. I was told I was gifted at gymnastics, whilst I flew into the splits and was doing cartwheels across the floor. I  experienced subluxations and dislocations but I thought this was normal. Instead of speaking up about my pain, I turned my attention to being naughty. I got myself excluded more times than I can remember. Teachers thought I was attention seeking but really my fatigue was so bad, I just wanted to sleep.

I did not have a functioning life for many years“.

I scraped my GCSES but did not care because I aspired to be an artist. I enrolled in college when I was 16 and gain when I was 19 and dropped out both times. I preferred to spend my time drinking alcohol and taking  drugs to relax my body.

art

This put I in a downward spiral because when the substances wore off the pain heightened. As a perfectionist, I realized art was not the right career path for me and kept it as a rare hobby.

It became more apparent my body was weak when I coughed so hard I moved a disc in my back and landed myself into hospital. Despite this, for many years GPS would not accept I was in physical pain.

Are you sure you are eating your 5 a day?” the doctors asked.

I was sent to see CPNS, complex needs and CAMHS who described me as ‘mentally troubled’.   The hardest part of my journey is my parents were not completely convinced of my pain either.  If I dare mentioned that four letter word,  they would say ‘Here she goes again, she is having a Morgan Moment’ – alluding  an impulse of craziness.

“I felt like I had no one and became suicidal”.

Going to the doctors and hospitals were weekly chores.  I was always poorly yet, no one could find anything wrong with me. I thought perhaps after all this time the doctors were right and it was in my head.   So I attended Complex Needs, High Wycombe where I spent time with mentally ill patients . It was there  I realized I was not making up my pain.  Me and the other patients did not share any symptoms in common – yet I did not want to live another second suffering.


From then to now…

From time to time I still feel suicidal, but I have come a long way since I was 17. I enrolled into college again when I was 21 to do Business and completed the course. I drink alcohol occasionally but I do not take illegal drugs anymore. Don’t get me wrong, the temptation is still there but I am trying to live a healthier life.  My diagnosis has made this easier, with the support from my family and friends.

Me and my family a few years ago.

“By my own admission, socially I am unreliable”.

A lot of people  stopped wanting to be my friend.I never know if I am going to have enough energy to see my friends. Going out for a meal, or to the cinema takes me to the point of physical exhaustion.



University life…

I started University 5 years late compared to everyone else because I mentally and physically would not have coped.  Due to low blood pressure I spend a lot of time in bed. I was also diagnosed with Dyslexia, Dyspraxia, photo-sensitivity and a vitamin D deficiency.  I was told the course would be too difficult for me to succeed and to think of a vocational alternative. Through blood, sweat and tears I managed to prove everyone wrong and pass the first year.


Allergies, Intolerances and Me”…

I was born lactose intolerant but after a few years I was given the green light to drink milk again.  In hindsight, whether the intolerance ever went away, I am not  sure.  I developed OCD because each time I ate I would be sick or have the shits.  I was uncomfortable food caused me pain but I liked the fact I was super thin.

I was often mistaken for being anorexic“.

parklife.jpg

When I was 21 years old, I went into severe anaphylaxis. Shortly, after an allergy prick test confirmed I  had developed an allergy to nuts and gluten. The test also showed I was lactose intolerant.

In my head –  I was  a freak. I had never met anyone else with multiple food allergies.

nut

“Changing the way I ate was the hardest thing I have ever done”.

I am in love with sugar and I can’t really cook that well.. Living off processed TV dinners and comfort food was my safe haven. The task to change my diet, was almost impossible for me. Doctors became concerned I would die.

I began to see an Adult Nutritionist for months religiously, who was my rock. Without her, I would not be here writing this today.

 


Share the Love

I would love if you supported me and followed/ liked my new Facebook page.

I do not know if this blog will be a success or not- but I need a hobby for all the hours I spend ill in bed. I really want to use this space and start up a YouTube channel to discuss content on mine and other peoples conditions to  raise awareness.

I also want to provide support to anyone who feels they are alone.


Thanks for meeting me.

my name

 

19 comments

  1. Thanks for creating awareness of this ailment. I wish you God’s strength as you battle through. Pain is difficult to handle. I know this because I suffered through and overcame the pain of domestic violence. Lots of love

    Liked by 1 person

  2. Hello Ingrid,
    Sorry I was slow getting back to you. I really like it. you are definitely talented with words. My favourite piece is the Ambush poem. Morgan xxx

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  3. Hi, Morgan, you are such a beautiful and talented girl, I really liked your spirit and inner strength. Thanks for giving awareness regarding EDS, so true lots of us are not aware of it. Blogging is a great way to share your thoughts and experiences in life. Looking forward to hearing more from you XXX

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  4. Hello, thank you for your kind comments. I love your blog, it helps me remember when I was well. I am sure I can get some tips for the future on places to go, when I am well enough to travel abroad again. When I work out how to make videos ( this might take a while) I will give a lot more information on EDS and I am working on another post for it. I am hoping it can be a guest post somewhere ( if someone will have me) so I didn’t want to overwhelm people with all the information in one go. I didn’t realise how therapeutic blogging was, you are definitely right ! Although, I am worried I will get addicted instead of studying when I go back to Uni haha. xxx

    Liked by 1 person

  5. Hi Morgan

    this is a truly inspirational blog. I really admire your spirit and generosity. Good luck with this blog – I really look forward to learning more about living a healthier life.

    Good luck

    x

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  6. I just learned about this illness a few months ago when we took our 8 year old son in to the podiatrist for his inwardly turned ankles and lack of arch support. The doctor examined his flexibility and talked about this syndrome as a possibility. I looked it up and of course started worrying. I do not know if he has this or not, and I hope it is not the case, but my heart goes out to you. I think it is really great that you are blogging about your journey with this and raising awareness. It takes strength to do that. Looking forward to following your blog. 🙂

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    • Hi Elisa, thank you for taking the time to read my blog. I feel I need to do a lot more posts on EDS to go through everything properly but I need more time for this, hopefully I will get there in the end. I am sorry to hear about your son but it is good that his podiatrist recognised it could be EDS. It is natural to worry, especially because he is so young. However, if he does not have other symptoms like chronic fatigue, bladder pain, chronic pain don’t worry just yet as many people can have hypermobility and live healthy lives. It is when other symptoms are involved it is more likely to be EDS. Furthermore, a parent normally has to have EDS to be passed down so if you experience hypermobility etc or your partner it is more likely your son has it. The next step would be to see a rheumatologist (in the U.K) or a genetic doctor (in the U.S) if you wish to explore EDS further with your soon. Thank you, to following me and I hope I can bring interesting posts to the table xx

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  7. Your blog is very honest and humbling.
    I am intrigued by your acknowledgement that a parent must have EDS – yet your own family did not seem to understand what was wrong.
    Do either of your parents not have EDS, or do they have it so mildly they never really noticed?

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    • Hi Jake, thanks for reading! I need to make that clearer actually. So, it is possible to have EDS and it not be inherited but this is rare from my understanding! It was actually my brother who got diagnosed first and then me and then my dad. The only reason why we figured it came from him it because my mother was told she didn’t have it. So, my parents weren’t understanding because they didn’t know my dad had it or know a lot about it when my brother got diagnosed. I had also been complaining for years how poorly I felt but because I suffer with depression no one would take me seriously. My dad has become less hyper mobile as he has got older but has skin problems and now wears a wrist brace and does not work a normal job and is a diabetic x

      Like

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