Eden Byrne

Belfast Woman’s Long Covid Led To M.E. And Vast Changes To Her Life

For 20-year-old Eden Byrne, a Covid infection led to Long Covid and the lasting effects of M.E. that so many are experiencing across Northern Ireland.

It has been devastating for the Belfast woman compared to how she lived beforehand.

“Before I was diagnosed with Long Covid, I was really active, sociable and I was just about to do my A-levels and then go onto university,” Eden explained. “I was able to compete in several things and coach.

“I enjoyed going ice-skating and bowling with my friends and travelling across the UK for taekwondo competitions. I was very outgoing and always up for a challenge.”

The changes in her life as a result of Long Covid and the subsequent overlapping symptoms she is experiencing have not been helped by the attitude of the medical staff.

“I have experienced some negative encounters with healthcare professionals and also a lot of stigma around being a young person and not being believed,” she said. “Depression or anxiety is what they hear but they don’t understand how debilitating the condition is and how it really affects your everyday life.”

Myalgic encephalomyelitis, more commonly referred to as M.E., is a condition that causes extreme tiredness and a range of other symptoms. The effects of the condition are something Eden believes people do not appreciate.

“The one word I would use to describe it would be exhausting,” she explained. “The condition itself is exhausting, but also what comes with it such as having to explain to others how it affects you and even the need to plan out your week/day and having to attend medical appointments can be very overwhelming and exhausting.”

At present Eden is experiencing multiple issues from the condition.

“I’ve been having continuing symptoms, the main ones being chronic fatigue, but I’ve also had breathlessness and heart palpitations and I often get post-exertional malaise,” she said.

Post-exertional malaise, or PEM is the worsening of M.E. symptoms and the appearance of new symptoms after physical or cognitive exertion.

“I recently got reinfected and with this, I got new symptoms and old ones returning which escalated further resulting in joint and muscle pain and also a lot of rashes causing erythromelalgia, another rare condition that causes burning pain and redness in certain parts of the body.”

The effects of her conditions mean that Eden has limited a range of what she can do.

“On my best day, I’m able to get out of the house for a few hours to visit family or friends or go to an appointment,” she explained. “On my worst day, I’m unable to get out of bed for most of the day. I have really bad brain fog and would be in a lot of pain. I’d have to get my meals brought to me and wouldn’t be able to go down the stairs.”

Though still managing life with M.E., Eden balances what she can and cannot do.

“Due to my health, I’m unable to work or be in education full-time but I spend my day keeping busy by doing lots of volunteering online and getting involved with Youth Social Action sharing my voice.

“I make sure that I have plenty of time for rest during the day and that my diary isn’t fully booked as I can struggle to manage my energy and symptoms if there aren’t regular breaks.

“I can’t wash my hair or make meals as I get really tired standing. I also have to be dropped everywhere as I can’t walk even very short distances which really has impacted my social life as I don’t often leave the house.”

And, to this day, many people don’t understand what she faces.

“I think a lot of my friends and family still don’t really understand how challenging it can be. I don’t even think some of my friends know what I’ve been experiencing as I do not talk about my problems and take on the role of being the mum friend.

“My parents are really supportive and my taekwondo coach is also really great, he keeps me involved in the club and keeps me up to date on how things are going in the club to make me feel like I’m still valued in taekwondo.

“I’ve made a lot of friends recently volunteering and through my different Long Covid groups. They are really supportive and I’m really grateful to have them.”

Eden wishes more people appreciated the battle she faces each day.

“It is real life and although you try not to let it get you down, some days can be really difficult, especially as a young person. You can feel that you’re missing out on a lot of different opportunities.

The Belfast woman says that both the medical profession and political leaders could and should do better.

“Just try to be sympathetic, non-judgemental and empathetic,” she said. “Each person is different it’s important that they are treated as an individual and not to put assumptions on them or say things that make them feel worse,” Eden said.

“As for political leaders, I think they should have more support services available and a lot more awareness raised about the condition in communities including schools and universities as it’s often overlooked and not often talked about.”

If you or someone you know is suffering from or needs more information on Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) Contact us