The Second Instalment – Emily’s Story

Hi Everyone,

I hope you are doing well and your weeks have been as good as mine, I have been in lots of pain this week but my work colleagues have been on top form humour wise which makes it so much easier…work and Ross are the only things that keep me sane I swear!

This is the second instalment of “Tales of A Spoonie” I am working on getting these onto another page of my blog but i’m not the best with working things out so bear with me on that one, I will get there. This blog is going to be all about a lovely girl called Emily, she reached out to me when I was looking for people to share their stories and she is honestly one of the loveliest people I have spoken to.

I asked Emily if she could put into her own words what her conditions are and how she is coping in day to day life and here’s what she had to say.

“I have a condition called Ehlers-Danlos Syndrome Type 3 hyper-mobility type. Basically it’s a group of rare inherited conditions that affect connective tissue. I have issues with things like my heart, digestive System, joints, muscles, stomach. I suffer daily from chronic joint pain. Sometimes mild to debilitating. I have good days and bad days. Meaning some days I’m able to walk and get about fine and others I need aid like crutches. Sometimes I look like there’s nothing wrong with me.

I also have issues with my digestive track. I have been told I have something called delayed gastric emptying which means my food doesn’t go through the digestive track properly because the muscles in my stomach doesn’t work properly which pushes food back up my esophagus and I’m sick or suffer from nausea.

I have a mitral valve prolapse which is a flap of skin (mitral valve) doesn’t open and close properly so therefore blood is let back up into the ventricle. I get symptoms like palpitations, dizziness, chest pain, fast heart rate, tiredness, nausea.

I’ve had on going issues since I was about 10/11 and was diagnosed July last year by a rheumatologist.

I have days where this chronic illness can bring me down quite a lot and affect me mentally. I’ve had a vast amount of tests for an 18 year old (some very unpleasant) and every test coming back normal (which is good but also sometimes frustrating when you know something isn’t right but the doctors can’t explain it). That’s the most frustrating thing with this condition that I’ve found!

This condition is so rare (1 in 5000 diagnosed) and needs so much awareness so other people aren’t misdiagnosed and can get the help they so desperately need.”

So to me I would say that some of Emily’s symptoms are worse in some cases than mine, I find it incredibly interesting to read about other people’s lives with varying conditions, we all vary so much in what we do in day to day life, how we all struggle in our own ways and this applies to everyone. Emily comes across as a very strong person who can handle anything that is thrown at her, this is not to say however that she struggles on the inside.

I moved onto to asking Emily she was coping with everything this week especially as the weather is now getting colder and damp and I know that usually makes my pain and fatigue far worse…especially as me and my duvet have a very special relationship..zzzzz.

“I’m not too bad thank you. Symptoms have been worsening with my heart and went to the doctors about it and he told me he thinks I’ve got slight anxiety which I don’t think at all but yeah it’s frustrating. Touch wood at the moment I haven’t been too bad. I’ve been achy stiff and sore but I am dreading when it gets even colder”

Me and Emily went onto to have a little chat about heart rates and the ways that they are affecting us at the moment, Emily’s resting heart rate is between 90-100, mine sits at around 120-140 resting and I am being investigated for PoTs as some of you are aware. Neither of our heart rates are where they should be and the doctors trying to fob you off with anxiety is not the way to go…

Emily chatted to me about how her family have been with her throughout everything, like I’ve said above everyone varies in many ways in life and some families will be stand offish and non supportive of some of these conditions as there is not enough awareness out there. When Lady Gaga announced that she had Fibromyalgia a few weeks ago I saw no end of comments saying that it is a made up disease for people to get attention and benefits (this infuriates me and I am going to stop talking about it now and talk about how fab Emily’s family sound) Here’s what she had to say about them.

“They’ve been very supportive and still are I’ve had problems from such a young age which were really unexplained and had so many battles with doctors to try and get answers” Emily also spends a lot of her time doing drawings and paintings, I will insert a copy of her image she sent me with her description, it is amazing.

I completed my final piece on my chronic illness. I painted me in the middle black and white to show the days when I’m really unwell and in pain and flowers all different colours to show the world still carrying on around me

Emily is definitely someone that I admire, through all our messages she has been kind and asked me questions in return about how I deal with things. She has a lot to deal with and some days are hard and I’ve been slacking with my blogs because I’ve been feeling awful in the evenings and she has been so understanding about it.

Through doing these blogs I feel that I am also making friends and learning a lot about my own conditions through others. I am taking other people’s positivity and using it to power me through my days and also through these blogs. Everyone should have their opportunity to share their story no matter what they are going through everyone’s voice should be heard.

Emily has one parting piece of advice for you all “just never give up if you think something is wrong or you have a gut feeling about something get it checked and get a second opinion if you still aren’t satisfied.”

I am going to sign off here, it has been an absolute pleasure to write about Emily’s journey. Emily you are a fab girl and please keep being yourself, thank you for sharing your story!

If you would like to take part in one of these blogs please feel free to contact me and I shall be more than happy to share your story. All my social links can be found on my page if you would like to follow my story. Have a fab weekend.

Signing off for now,

Scarlett x

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