Elaine Morrisey is a mother of two from the Midlands, who suffers from a disorder known as Ehlers-Danlos Syndrome (EDS) which is a genetic disorder affecting collagen formation and function in the body.
For a number of years, Elaine suffered with chronic pain on a daily basis without a diagnosis, and thought that everybody was experiencing the same level of pain everyday.
It wasn't until she received a diagnosis in 2018 that Elaine finally got an answer as to why she was suffering from so many symptoms, ranging from pain to memory loss.
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Recalling the event which brought her illness to the forefront of her mind, Elaine shared the terrifying moment she forgot how to use an ATM due to her memory loss.
Speaking to RSVP Live, she said: "In 2018, I call it the ATM incident, I had being having memory loss issues, I was trying to hide them, my health was rapidly deteriorating and was finding it hard to hide it - my body was paralysing, shopping was leaving me bed ridden and I would need to be flat a lot.
"I was forgetting things, not brain fog more extreme. I went to an ATM to lodge money and I couldn't remember how to use it, I couldn't remember how to use the number pad. I had to stand back and watch someone, I am shocked he didn't give out, lodged the money and went home and sobbed in the bathroom."
After the ATM incident, Elaine finally decided to make an appointment with her doctor, in an attempt to get to the bottom of her concerning symptoms.
Elaine shared: "It took over a week to make an appointment with doctor - she said maybe it's all in your head she was right - it was my brain and my neck.
"I was diagnosed with CCI, Chiari Malformation, numerous white lesions and swelling on my brain but I was told nothing could be done for me and sent on my way with no help."
Reflecting on what life had been like before her diagnosis, Elaine explained that she had never really experienced life without pain, however she has just thought pain was a normal experience that everybody went through.
The mother of two said: "I have never know what it is like to be pain free, I was just good at hiding it, everyone in chronic pain is. They have to do things at pain levels that would leave others in bedbound because if we didn't we would never leave bed."
She continued, sharing that she attempted to live a normal life despite the ongoing challenges she faced everyday: "Before I became bedbound I was sociable and outgoing and lived a very active lifestyle. I travelled when we could, meeting friends, I was about to start an internship having worked hard in college for a number of years, and was a very hands on mammy.
"I loved being a mammy and adventures we had, be it searching for fairies in our local forest, baking or seeing the world. So many little things I took for granted that I dream of experiencing again and feel so much joy when I do now. Our 'When Mammy Lives' list. I feel lucky I travelled when we did."
Describing how EDS has impacted her life, Elaine told how the life-threatening disease has taken away so much from herself and her family: "Someone once described EDS as a thief as it steals so much from you, when filled with so many other conditions it can take a lot - and it did from me. It stole three years of my life, and without people being so generous and kind, it would have stolen my life and my children of a mother forever."
In the same year that Elaine was diagnosed, her daughter Ruby also received a diagnosis for the same condition.
Ruby has been suffering with EDS symptoms since her birth in 2015, and was diagnosed in 2018 alongside her Mum.
"The hardest part of being Ruby's mam, I know what pain she is in and I know she is never pain free and I was not at her level till my 30's. She is never without her smile."
In recent weeks, Elaine and Ruby travelled to Spain in order for Ruby to receive treatment for her ongoing health issues.
Speaking about the cost of the procedures, Elaine shared that the burden falls completely on the patient: "You are completely alone in everything from finance to arranging it. Thankfully they are very well ran and everything is very quick with support and understanding of your treatment in Ireland.
"Ruby travelled for physio, we were advised and told of how beneficial it would be to her - but no you are not offered any financial aid or support. It was of huge benefit you just wish it was possible for her to have access to this level of care here at not such huge cost."
When talking about what she hoped for the future, it was very clear that Elaine just wished to resume a normal life for herself and her daughter:
"I hope one day to bring Ruby to Disneyland Paris, as that is on top of her 'When Mammy Lives' bucket list but it may be a few years before that is financially possible - but my biggest dream and one I longed to do was see Ruby make her communion and I did it."
Elaine explained that her condition will always be with her, and her only hope is that she might be able to improve enough to reclaim small everyday freedoms without putting too much stress on her body:
"I will always have EDS I will never push through the pain like I did before and risk hurting myself, I do hope one day to have manageable pain and to be able to get more and alone, to complete our bucket list. To become more and more independent. I am learning to walk and am getting better and better, who knows maybe I will get there one day."
To follow Elaine and Ruby's story you can find out more at www.facebook.com/RubysEDSJourney or www.gofundme.com/f/8b87y-ruby039s-healthcare.
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