LIFE was looking up for Michelle Hanley, with a return to education, two beautiful children and a comfortable home to live in. But just over two years ago, the young Kildorrery woman was dealt an enormous blow with a devastating diagnosis.
Michelle first knew something wasn’t quite right during Christmas 2014 when she was gaining work experience at her friend Aoife’s salon, Darby’s in Cappamore, as part of her hairdressing training at Mallow College of Education.
“The fingertips on my left hand went numb”, explains Michelle. “I put it down to washing hair or maybe the heat from the hairdryers. What I found flared it up more was heat.
“It was niggling away at me for a few weeks and Aoife said I should go to the doctor. I already had Doctor Google looked up, which told me it was most likely a trapped nerve.”
Taking Aoife’s advice, she booked an appointment with her GP, who immediately said he was referring her for an MRI scan.
“I was thinking, this is a bit OTT,” says Michelle, who didn’t believe numb fingertips should be such cause for concern.
A few weeks later she had the MRI, all the while thinking: ‘This is all so unnecessary and just wait until you see the look on their faces when it shows nothing wrong’.
A few weeks would pass before Michelle got her results and she went about her life as normal, even though there were other physical complaints.
“If I bent my neck it was like an electric shock would run up across my lower back — not painful but annoying and not normal.”
Still, upon returning to her GP, she was unprepared for the words she was about to hear: “Michelle, it’s Multiple Sclerosis.” The day of her diagnosis was February 14, 2015 — Valentine’s Day — when most people were only concerned about how many cards they were receiving or where they were going to dinner that night. She was just shy of her 25th birthday.
“I didn’t know people my own age got this, I thought it was only old people got it. But I was told later at the hospital that I was actually relatively old, as people are presenting with it at 16 or 17.”
Michelle doesn’t have a clear memory of that day of her diagnosis, as it was so overwhelming. But she can recall the looks of heartbreak and worry spread across the faces of her parents and aunt as she told them the news.
She also remembers looking at her then two-year-old son and seven-year-old daughter playing happily, oblivious to what was going on. With little understanding of her diagnosis at that point, she wondered if she would be able to look after them and if she would end up in a wheelchair.
In the following days she tried to carry on with the family’s usual routine, especially for the sake of her kids, Abbey and Alex. But by night when, they were safely tucked up in bed, she would crumble.
“I was so scared of what this meant for us and how we would cope,” she says.
For the most part, she tried to block it out, until a few weeks later when there was no ignoring her symptoms.
“I woke up with the whole left hand side of my body numb and tingly as if someone had drawn a line down the middle of my body. My right side was unaffected but the left side was completely dead. I was afraid of what it meant. I thought, ‘Is this the start of my demise? Is everything going downhill already?’”
Upon phoning her GP she was sent straight to the Mercy University Hospital, where she stayed for a week, undergoing several tests. She was heartbroken to be away from her kids for so long, but by the end of the week she learned that the type of MS affecting her is known as Relapsing and Remitting Multiple Sclerosis, described by Michelle as “the best of the bad bunch”.
“I have relapses and after a few weeks they disappear and I am then in the remitting stage”, she explains. Unfortunately, one lasting symptom sees her left fingertips remain numb, affecting her manual dexterity.
Her biggest daily battle is fatigue, which sometimes gets so bad that she can’t keep her eyes open. Some days her legs feel as though there are concrete blocks tied to them and her mind feels muddled.
“On those days even the stairs is a mountain to me, the burning I feel after climbing them is unbearable and just indescribable.
“On my bad days my brain just refuses to comply with my instructions, no matter how simple. It is called ‘brain fog’ and that is exactly what it is. Brain fog reduces concentration, reduces memory and in general I just simply can’t think straight.”
Also, due to the fact that her medication supresses her immune system inside her spinal cord, it means she is much more susceptible to infections and viruses than the average person.
She’s had a few ups and downs since her diagnosis and the weeks following her stay in hospital were particularly bad, as her body struggled to recover from the lumber puncture and IV steroids. She experienced skull-crushing migraines and also found herself constantly hungry.
“I comfort ate, reaching for all the wrong things. I ended up gaining over two stone and it really affected my self-confidence. I hated what I saw in the mirror and none of my clothes fit.”
Her demeanour improved though and she spent 18 months on a drug called Gilenya. However, she has MRI scans every six months and the last two — in April and October 2016 — showed new lesions on the brain and her medication was changed; another setback leading Michelle to more comfort eating, until one morning she told herself to “snap out of it”.
So she threw herself into Slimming World membership and became a gym aficionado at Mitchelstown Leisure Centre.
“I fell in love with exercise and how it made me feel. Muscles I didn’t even know I had are solid, I have more energy and I’m in such a good place,” she says.
Although initially scared of her diagnosis, she eventually set about understanding and managing her condition.
“I started trawling through the MS Ireland website and have never looked back. All of the information I needed was right there. Eventually, I plucked up the courage to pick up the phone and got in touch with a woman from MS Ireland called Patricia Lucey. That was the single best phone call I have ever made. She has been a rock for me to lean on, always there to talk and more importantly to listen. She has made several house calls to me and even introduced me to meditation to help me manage my anxiety. Without the support of Patricia and MS Ireland I don’t know where I would be today or what version of myself I would be.”
Now, more than two years down the line, Michelle wants to give something back and is embracing two of her other fears — heights and flying — by taking part in a 10,000ft skydive for MS Ireland as part of the ‘Kiss goodbye to MS’ campaign.
“When I say ‘fear’ I don’t mean a little nervous, I mean absolutely petrified — just ask my mother who sits beside me on our yearly family holiday. I’m a mess! My mother would be saying ‘Hold it together, Michelle’. I’d have beads of sweat on my forehead and I’d have the shakes. Cruising altitude is fine — but it’s getting there, the initial 20 minutes and also the night before. I’m the same with fairgrounds and Ferris wheels — anything that leaves the ground, forget it!”
Just as she is grateful to MS Ireland, she also feels blessed to have a wonderful family (“I couldn’t ask for a better bunch of people in my life”) and she is full of praise for others who have been part of her MS journey too, such as her GP, Dr Herlihy, and his secretary Catherine.
“They both go above and beyond to help me when I need them. He is a fantastic GP and a tower of support. Other medics have since said that how quickly he picked up on my MS was out of this world.”
Now, Michelle receives a Tysabri infusion once a month at the Mercy Hospital, where she is very impressed with the standard of care.
“Everyone knows your first name. You don’t feel like a number. You feel important, like you matter.”
Michelle has learned to take one day at a time and she’s determined to maintain her independence; adamant that MS does not define her.
“My biggest battle was psychological but I’ve taken all that into the gym with me to make my outlook positive. The biggest lesson I take from my journey so far is a positive mentality helps with a healthy body.”
Michelle’s skydive will take place at Clonbullogue Airfield in Clonbullogue, Co. Offaly, on April 8. Donations can be made through www.justgiving.com/fundraising/Michelle- Hanley3 #KissgoodbyetoMS #IhaveMSbutMSdoesnothaveme
There will also be a fundraising Breakfast Morning in Kildorrery Community Hall on Saturday, March 18 from 9am to 12pm.
FACTS AND FIGURES
Multiple sclerosis (MS) is a chronic disease of the central nervous system, which causes a gradual degeneration of the nerves.
This results in a progressive deterioration in various functions controlled by the nervous system.
MS is an autoimmune disease, which means it is due to an attack by the body’s own immune system.
MS has no cure and is characterised by a slow progression of symptoms.
An estimated 9,000 people in Ireland have MS. Women are nearly twice as likely to get MS as men.
The MS Ireland website is www.ms-society.ie and their information line is: 1850 233233.