‘Life with MS will never be normal but it’s a great life’

‘Life with MS will never be normal but it’s a great life’

Claire Kelliher with her husband Ger and one-year-old son Sam at their home in Bandon, Co Cork. Claire was diagnosed with MS six years ago and is speaking about her experiences ahead of World MS Day. Picture Dan Linehan

CLAIRE Kelliher, who lives in Bandon, is serving as a beacon of hope for defying the odds at every turn. This comes six years after a relapsing and remitting MS diagnosis forced her to quit her job and reassess her life goals.

Her now-husband Ger remained by her side the entire time. Following a romantic proposal, they tied the knot three years ago and haven’t looked back since.

Despite the excruciating and sometimes terrifying symptoms, Claire said the love and support from her husband and family helped her through.

Casting her mind back to the initial warning signs of the illness she said: “We were doing the Camino but a week into it I got a call with some bad news. I kept on crying until my vision started to go. I thought that I had literally cried my eyes out.”

The 33-year-old’s symptoms continued after she arrived home.

“A touch of someone’s hand felt like a hot iron being pressed against me,” she said.

“It might be a normal temperature but I’d feel like I was burning up. Half of my body went numb and tingly. It felt like it didn’t belong to me anymore.”

She recalled going for an eye test as her vision deteriorated.

“When they asked me to read the letters on the chart I asked ‘what letters?’ I couldn’t even make out the very large print.”

After an ophthalmologist reassured Claire there was nothing wrong, the opticians referred her a second time.

“When you have a condition like this some people don’t take your word that you can’t see,” Claire said. “It’s almost like they don’t believe you because it’s an invisible disease.”

The mum of one was eventually seen by a neurologist before a diagnosis of relapsing-remitting MS was confirmed. One of her biggest concerns was how the illness would affect her Ger.

“He is a psychiatric nurse who spends his whole day caring for people. I didn’t want him to come home each day and have to care for me as well. In some ways, I was in a protective bubble because I knew so little about MS. The first thing Ger did was go straight to the shop and buy me a laptop so we could research everything together.

“We wanted to make the best of the situation even though things were so difficult to begin with. It took a few years to understand my new reality. The brain fog was very difficult. Even if it was something as simple as an offer of a cup of tea I wouldn’t be able to comprehend what the person was saying to me.”

Even through the obstacles, Claire still managed to thrive in her personal life.

“I took a few years out to adjust and find the right medication. With some people, it was a case of ‘sorry about your diagnosis, it’s been nice knowing you’.

“My friends who were always there were very supportive and were always there for me. Three years ago I got married. I have a beautiful son and the best job in the world. Having so much love and support makes everything so much easier.”

Every day a battle

However, she acknowledges that every day with an invisible illness is a battle.

“Even though I have a disability sticker, people still look at me in a way that suggests I’m taking advantage. Sometimes I have to bring a visual aid with me just to have a visual so people know to be gentle.”

She referred to one uncomfortable incident.

“I had parked in an accessible space for work when a builder told me that I didn’t need to be there. I told him that I had MS. 

"While he didn’t say anything his friend, who was with him, apologised on his behalf. When something like this happens it really brings you down. At the same time, I do appreciate that people are trying to defend the people who use these spaces. It would just be nice if people looked out for the disability stickers first.”

Many of her symptoms, Claire admits, can be difficult to live with.

“There are times when I feel judged. When I’m walking down the street and find myself swaying I want to tell people that I’m not drunk and this is just what MS looks like.”

Dream job

Claire is grateful to her employers for seeing beyond her illness.

“Two years ago I landed the job of my dreams working at ClickDimensions on the South Mall. When I went to the interview I had all my cards on the table. I told them all about my illness and ever since I started working there the company have been so understanding. They have been so supportive and allowed me the flexibility to work from home whenever needed. They don’t even see my disability which means I feel valued and appreciated as I am.”

The Ballincollig native faced her biggest challenge yet after becoming pregnant with her son Sam — who is now a year old.

“I had heard of people relapsing so bad after pregnancy they ended up in a wheelchair. That made me extremely nervous. My vision went for three months and my biggest fear was that I wouldn’t be able to see my baby’s eyes when he was born. I was so glad when it finally came back.”

Life as a mother

Claire is relishing her role as a mum.

“My husband had to leave us a few hours after Sam was born. Looking after a newborn alone is scary, but the staff at CUMH were amazing. Thankfully, we were given the most wonderful and patient kid in the whole world. Even now he seems to know when mommy doesn’t always have the energy to play. He lets me sleep in some mornings and happily snuggles up next to me. 

"Having a baby has given me so much confidence. I created life and now I feel like I can take on anything, even MS.”

She extended her gratitude to MS Ireland or their ongoing support.

“MS Ireland provided invaluable resources like the Newly Diagnosed day, or Stress/Fatigue Management courses. We even had monthly social meet-ups (pre-Covid). I learned to slow down and appreciate the things that truly matter in life. I started back at work and took things one day at a time, gradually increasing my strength and building myself back up.”

She urged people to be kind to each other and said: “My life will MS will never be normal, but it’s a great life and I wouldn’t change a thing about it.

“We all have invisible challenges in our lives, so it’s important to be kind to others as you never know what’s going on. It’s also so important to be kind and forgiving to yourself. When I fall in public, I no longer get embarrassed, I just laugh it off and walk slower until the next time.”

Today is World MS Day. To find out more about MS Ireland or how to donate visit ms-society.ie

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