‘I learned to change can’t into how’ - Young Ashbourne woman living with MS says condition 'won't define her'
A YOUNG woman from Ashbourne who was diagnosed with Multiple Sclerosis when she was just 20-years-old has opened up about the challenges of living with the condition that she says “does not define her.”
Hailey Stevely received the shock diagnosis in 2011 after family members were concerned about some of her symptoms and encouraged her to see her GP.
The 30-year-old decided to speak out about her condition as part of World MS Day happening this Sunday, 30th May.
World MS Day aims to raise awareness and support people living with MS, the most common debilitating neurological condition affecting young adults in Ireland.
The day takes on new importance as the 9,000 people in Ireland living with MS have faced various challenges throughout the pandemic.
The theme for World MS Day 2020-2022 is ‘connections’.
The MS Connections campaign is all about building community connection, self-connection and connections to quality care.
“I was diagnosed in 2011 when I’d just turned 20 and it was a whole new journey for me. I was in Australia and my mam and sister, and her boyfriend came to visit us,” said Hailey.
“I was walking in front of them, and my sister was studying to be a nurse and she noticed that my left leg kept tremoring every few steps and then they unbeknown to me went into investigation mode and they were asking me questions about how I was feeling or other possible symptoms I was having.
“My mam would say even now, Hailey you were so emotional at the time, and looking back my body was trying to tell me but all of this stuff I had never put together, I was only 19, none of this would come into my head that they could all be related.
“Shortly after that I decided I wanted to return home and came back one weekend and my mam had me in the GP on the Monday morning.
“He did a few tests on me and told me that I had to go and see a neurologist and within the space of two weeks he said I’m 99 per cent sure it is MS but said if you want, I could do a lumbar puncture.
“All of this was a foreign language to me I didn’t have a clue what was happening.”
Hailey admits burying her head in the sand was the initially way she coped with the life changing diagnosis.
“When I went to Vincent’s I was put on an injection you take every 48 hours and bar that injection I went into denial like it wasn’t happening, if I ignored it for long enough it wasn’t happening.
“That went on for about four years and then I had a relapse they put me on a course of steroids and changed me from the injection to an oral tablet which was fantastic to get rid of that injection gun.
“I started thinking I can’t do this and I can’t do that and for about four or five years I went into victim mode you step back from everything even social events and I was still only in the early twenties. You question everything and overthink everything you are doing.”
The Ashbourne woman eventually found the strength to take on MS head on.
“You really have to change your mind set, it is not easy but there is so much out there for your wellbeing and so many programmes. I just invested in lots of different things, and I learned to change can’t into how. I can’t do it this way anymore but how can I do it.
“It is so scary and to be diagnosed with anything is frightening but it is manageable so don’t be afraid. Look out for the symptoms. Pay attention to your body, nobody knows your body better than you.”
“The past 10 years has been a decade of adventure, but I will move on. Throughout this decade I have tried most things on the latest ‘cure for MS train’ and I can say if it worked, the doctors would be doing it, so keep your money or better still, donate it to places like MS Ireland and avail of their services. I turned to MS Ireland for support, to answer questions and for classes.
“I have also been involved in exercise classes organised through MS Ireland physically pre-Covid but now they are online and are just as great. A great way to meet others, talk about similar concerns, share things that you find helpful and get motivated”
More information here at www.ms-society.ie