“As far as I was concerned it was an unwanted passenger in the car, nothing I could do to get rid of the company; just acknowledge it was there and continue driving.” This was Ciara O’Meara’s outlook upon receiving a diagnosis of multiple sclerosis, or MS, aged only 22.
MS is a potentially disabling disease of the brain and spinal cord. The immune system attacks the protective sheath (myelin) that covers nerve fibres causing communication problems between the brain and the rest of the body.
Now 34, Ciara describes herself as both defiant and stubborn in nature. One could argue that these traits have served her well. Not one to shy away from a challenge, she has travelled from Africa to Alaska, completed an MA in teaching, and an MA in nursing education. She now works full time as a clinical research nurse.
In 2008, while sitting third-year nursing exams, Ciara began to experience blurry vision and persistent dizziness. On the cusp of graduating, she felt she knew enough to self-diagnose, concluding she was suffering from vertigo. However, it transpired to be an early and common indicator of MS: optic neuritis, inflammation of the nerve which transmits visual stimuli from the eye to the brain.
'Vertigo'
"I was prescribed a course of Stemetil to help with the 'vertigo' and advised to see an optician regarding my vision. I thought the dizziness to be the consequence of spending long study periods at the laptop. It all seemed pretty run of the mill at the time. Within a week the 'vertigo' was gone, exams were over, and I was on a plane to Hawaii for the J1 of a lifetime."
Returning home four months later, tanned, tired, and full of stories to tell, Ciara fought off a series of recurring chest infections. This gave no cause for concern as it was quite common for her to catch a cold/flu upon returning from a sun holiday. But the episode that would ultimately lead to her diagnosis of MS occurred while enjoying a long weekend with family at home in Tipperary.
“When I got out of bed, a feeling of pins and needles pulsated from the top of my right toes and stopped just underneath my right breast. I had full power, but I was numb and tingling down along my right side. I was worried but I didn’t panic. I checked my face in the mirror and spoke aloud – I was in nurse mode, investigating whether it was a stroke I was experiencing. I got dressed and rushed to the kitchen. I turned to Mam and said, ‘Don’t panic but I have no feeling on my right side’. Mam was looking at me, half expecting me to laugh. My little brother, who was only 12 at the time, gave a laugh and drew a kick to my right leg to see if I was really messing. They both knew I wasn’t when I didn’t even flinch.”
Ciara considers the expeditious action taken by her GP that day to be the reason for the prompt identification of the condition. “Within minutes of him examining me I was on route to A&E. He is without doubt the reason I am living so well with MS today.”
Early intervention has shown to provide positive impact by potentially slowing the progression of the lifelong condition. His vigilance ensured Ciara quickly began disease-modifying therapies.
Ciara, we think you have MS
Ciara drove herself to the hospital. Despite having no feeling on her right side, she still had full power. As a student nurse knowing how hospitals function at weekends, she expected a long wait. However, a general medical consultant and her team approached Ciara the following morning. It would be the consultation that bore the deepest imprint on Ciara’s memory. In a distasteful, graceless manner, life-altering news was delivered. “Ciara, we think you have MS.”
The news thrust Ciara into a state of disbelief. “To this day I have no idea what she said after that. She hadn’t even told me her name. She had no regard for the fact I was only 22, alone with no support in a hospital bed.”
The doctor’s words echoed in Ciara’s mind all weekend, she tried consoling herself that it may not be true. Clinging to the fact the doctor had no MRI, and no lumbar puncture results to qualify her diagnosis. When discharged that Monday, despite still having pins and needles in her right side, Ciara headed for the nurse’s ball in Cork. “I am fiercely independent. If someone tells me I can’t do something, it makes me want to do it even more. Looking back the best thing I could have done was go to that nurse’s ball. It cemented for me that life is for living. Life is here and now. The future is unpredictable for us all.”
A check-up the following year was scheduled, and Ciara carried on as normal. “I graduated as a general nurse and got my first staff nurse post on a general medical ward. I was living with friends, going to the pub, going on holidays and enjoying weekends. The pins and needles stayed hovering around my right thigh, but I never thought about it. It was only when shaving my legs, it would hit me with a bang. The sensation of a razor blade on pins and needles was awful.”
A year later, Ciara had another MRI and check-up. The rescheduling of an appointment to discuss her results raised alarm bells. She began to prepare for bad news. “I immediately knew something was wrong. I knew how the HSE worked. There was no way anyone would be called for an earlier appointment unless something had shown on the MRI.”
On June 15th, 2010, a consultant registrar confirmed what Ciara had feared: “demyelination on the cervical spine, conducive with a diagnosis of MS”. Suddenly, there was an inescapable sense of unpredictability and uncertainty to her life. She did not relish the thoughts of having to commence treatment. Nor could she silence her concern about how it would impact her starting a family.
“The registrar gave me information booklets on the different types of treatment available. I was faced with one of the biggest decisions of my life without any opportunity for guidance or support.”
Ciara began relentlessly searching for more information. Eventually, she decided Rebif would be her first disease-modifying therapy. This involved subcutaneous injections three times per week.
Naming loss of control as one of the most difficult elements of living with a chronic illness, Ciara felt this treatment mitigated that loss, to an extent. “I dreaded having to give it, but I had control with Rebif. I administered it three times a week, on a day and time that suited me.” Ciara’s body tolerated the drug quite well for eight years. During this time, she furthered her education and enjoyed some travelling too. “I was well, and I was ticking through my bucket list at an unmerciful rate.”
In the six months leading up to summer 2017, Ciara’s health began to deteriorate. Suffering increased lethargy, bladder and bowel issues. She chalked this down to her active social life, but an MRI told a different story. The symptoms were indicative of a relapse. New lesions had appeared and it was time for a different drug.
Her consultant advised Tysabri. Unlike Rebif that she could administer herself, this was an intravenous infusion given monthly. “I had no choice as to what day I could take the Tysabri. It had to be the last Tuesday of every month. My fear was being realised, I had to work around MS.”
First home
At the time, Ciara had been renovating her first home with her fiancé Dave. Consumed by fear, she began to question everything; was there any point in renovating and moving in, what would happen if she were to relapse further, and her biggest fear, what if she could no longer have children?
I didn't do anything to get this, and I can't do anything to get rid of it. All I can do is get on with it
She feels an increasing sense of urgency to start a family but conflicted by not feeling ready. “If I wanted to start a family now, they would delay the Tysabri. If not, they would begin the treatment with the intention that I would remain on it for two years before starting a family.” She felt trapped. Resenting how imposing her condition had become. Despite knowing that many women with MS have healthy pregnancies, she was consumed with doubt and fear.
“I came up with a mantra. I didn’t do anything to get this, and I can’t do anything to get rid of it. All I can do is get on with it. Suffering is an inevitable part of life. It is how we choose to deal with it that matters.
“MS is unpredictable but, then again, so is life. Worrying about the ‘what ifs’ will take away from me enjoying the here and now.” Ciara believes MS is not a death sentence. Dedicated to raising awareness of MS and to debunking the myths that surround it, she does not want to be known as “Ciara, the girl with MS”.
Living with a chronic illness is both physically and emotionally challenging. MS is not always visible. There are invisible symptoms and issues. She devotes much of her time in raising awareness and educating people about the condition, so that these hidden issues can be understood and supported.
Tolerating Tysabri very well with no new lesions in the last year, Ciara is happy, working full time, and eagerly waiting for lockdown to end so she can walk up the aisle.
