Chronic Fatigue Syndrome, Chronic Pain, Disability, Health, Spoonie

Living Life with Chronic Illnesses by Ellie-Jayne Lloyd

Chronic Illness Warrior, Ellie-Jayne Lloyd, suffers from various chronic illnesses. Ellie-Jayne has agreed to add her face and story to Faces & Stories of Chronic Illness. I am so grateful that Ellie-Jayne has shared this, as each story told raises awareness and helps fellow sufferers.

You can connect with Ellie-Jayne by following her on Instagram.

Faces of Chronic Illness Living Life with Chronic Illnesses, by Ellie-Jayne Lloyd
Living Life with Chronic Illnesses, by Ellie-Jayne Lloyd

Hello, I’m Ellie. I’m 23 (soon to be 24). I have always suffered from ill health, but when I was a child, I didn’t have the understanding that I was experiencing chronic pain, since I knew no different. I found it very difficult to go to school. Learning isn’t easy when your body is fighting against you. 

When I was 11 years old, I started to pass out uncontrollably. As a result, I had to leave school and started my journey at Alder Hey Children’s Hospital. From age 11 to age 18, I spent most days of the week back and forth to the Children’s Hospital, having various tests done. I was diagnosed with Chronic Fatigue Syndrome, Chronic Insomnia & Irritable Bowel Syndrome (IBS). With the side tag “as a result of another illness”.

Doctors could all agree that there were issues, but whenever a test was done, another issue would arise. This lead to a never ending “inconclusive diagnosis”. I spent most of my time in bed, unable to move much but unable to sleep. When I did go out, I would put on a brave face, but as soon as I got home it was back to “zombie mode”.

When I turned 18, I had to leave the Children’s hospital, which opened my eyes to the lack of experience general hospitals have with rare chronic illnesses. Still to this day I am shocked how ‘adult’ hospitals do not recognize low blood pressure as an issue. Leaving the Children’s Hospital was like going from 100mp to 5mp. I’d gone from being looked after and helped to find the answer, to a world where hospitals struggle to locate a patient with multiple issues. 

During this time of change, my condition changed too. Some changes were positive, like how I’m still dizzy most days, but have learnt how to control passing out, so I can stop it or come round quicker. However, the negative changes consisted of internal bleeding in my stomach, which comes out my mouth or rectum, joint subluxation, throwing up after eating, crippling abdominal pain and heart issues. All leading to further tests and operations. The main inconclusive test, out of all of these, was with my heart.

I was 18, when I had to go for a Tilt Test, where they basically monitor how your heart responds to being stood up. The test is supposed to last 45 minutes. I was in there for 15 minutes when my heart rate started rapidly dropping and stopping. As the test could not continue, my medical records still do not have a diagnosis for that. Leaving a question mark over the true condition of my heart. 

Since that test, I was, for a while, out of the weekly hospital routine. I suffered on. Determined to work and earn a living. My hospital journey only kicked up speed again when I went for an operation to check for endometriosis, back in 2018. Though endometriosis was not found (which is common in that illness), it was confirmed that I had a blocked bowel. So I was sent on my way with laxatives and a 4 week sick note. All in aid to spend 4 glorious weeks of pooping. Those 4 weeks confirmed for me that laxatives make me pass out with chronic pain and do not make me poop. Since then I have been on a constant change of diet to try stop the bacteria in my gut from settling. 

Fast forward to current day and my medical records show the following diagnosis’: Chronic Fatigue Syndrome / Myalgic Encephalomyelitis, chronic Insomnia, chronic pain, IBS/IBD, Hypermobility Syndrome, Ehlers-Danlos Type 3, Endometriosis, low blood pressure, and an undiagnosed heart issues. Though I am still not at the end of my journey. Especially when it comes to my bowel disease and heart.

I do not want to end my story on a sad note because I want to make one thing very clear… I am happy my medical records have all the above diagnosis’. I started this journey with all the pain but no diagnosis. Now look at me!? If that’s not a positive outlook, I don’t know what is haha. My life is and has truly been amazing! This story will shock a lot of people I know as I am only now telling my story and not hiding it.

I’m proud to say I’m disabled and since I cannot change the facts, I will embrace it. In these last few years, even though I have been scared and struggled, I haven’t let that stop me from living or resting when I need to. 

Through all of this, in 2015 I did an apprenticeship in accountancy, doing payroll. Getting my qualifications outside of school, since at age 16-17 I still hadn’t even sat for an exam. I still to this day work in accounts, doing payroll which I love, 4 days a week. The 5th working day is left for rest, hospitals or even more excitingly, running my own business. I sell plants, which is a true love and hobby of mine. This past year I won runner up in the UK, national young traders event. Selling plants and talking about them made me exhausted and I suffered as a result, but doing what I love just makes life worthwhile. 

So to summarize to anyone reading this and feeling low or down on life, I get it and I still feel that way from time to time. Life isn’t easy with all these hurdles, but remember you can fall down and once there, just rest. Then pick yourself back up and do something you love, even through the pain. 

My most favorite movie quote is “The greatest thing you will ever learn, is just to love and be loved in return” from Moulin Rouge. Love what you do and even if you falter, you can’t regret it. I am so glad to have been asked to share my story. This is the first time I have spoken or written about the general picture of the past 13 years of my life. Awareness is important. Invisible disabilities are real. But whatever you do, don’t give up hope! 

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