Tuesday 16 October 2018

'Tough s**t, join the club’' - inspirational mother-of-three on living with 'pain in the ass' illness

This week, Independent.ie is running a series on some people's experiences around end of life in Ireland. Here, Carmel Ryan (59), tells Geraldine Gittens how she copes with living with multiple sclerosis, a degenerative illness, and how she has had to face her own mortality

Carmel Ryan lives in Eaglewood Cheshire in Dublin. Photo: Arthur Carron
Carmel Ryan lives in Eaglewood Cheshire in Dublin. Photo: Arthur Carron
Geraldine Gittens

Geraldine Gittens

“The most frightening thing I found was going blind, because you’re never told about anything like that.”

“It’s something - of all the things to go wrong - if I’d known about it before it happened, it would have been a great help.”

Mother-of-three Carmel Ryan (59) from Dublin has multiple sclerosis, a progressive neurological condition which can cause symptoms like reduced mobility, vision problems and fatigue.

She uses a wheelchair and does not have the use of her right arm.

Diagnosed over 20 years ago, Carmel has lived inside the slow decline of her body and she has prepared a last wishes form with her carers at Cheshire Ireland, should her disease progress quicker than planned.

Looking back, Carmel still remembers when the early signs of MS began to show themselves.

“I couldn’t sleep very well. I’d get tired very quickly and I’d trip sometimes. I just thought it was my leg giving way a little, but little did I know it was serious.”

 “I sounded drunk even though I wasn’t. My speech went weird and I walked as if I was drunk as well.”

“Now I say my MS has kicked in a bit, because how else could you explain it really? You learn by time really and talking to other people with MS.”

We meet Carmel today in her apartment in Eaglewood Cheshire. The minute you meet her, her infectious sense of humour has you laughing, and it’s easy to think you’ve known Carmel for years. Most amazing perhaps, is the fact that she’s upbeat, even though she has so many reasons to complain.

“I say to people I just have a little different of life’s pains in the asses. I can’t speak [properly] anymore, I look drunk… it could be worse. I don’t know what, but it could be worse.”

“I really did get very frightened when I went (temporarily) blind. That was the worst ever. Nothing could ever top that ever.”

“I know it’s a horrible disease to get, but at the end of the day it’s what you make of it really.”

“We’re all going to die for God’s sake. For your own sanity, it makes life a lot better for you to just say, ‘oh well, I’m going to have some bad days, I’m going to have some good days’.”

“I feel that the only person who’ll suffer worse for a bad attitude is me, so please be kind to yourself Carmel.”

“That’s just the way things are.”

Carmel has lived in a Cheshire Ireland apartment for the past six years, and the staff there know, thanks to the last wishes form she completed with them, that she wants to remain there until the end of her life.

Cheshire will look after her care, medical needs, symptom management and pain relief, and she will only be hospitalised if the care she needs can’t be given in her home.

Practical and straight talking, Carmel knew she needed to use a wheelchair when she she had experienced one too many falls and her legs began to give way.

“My bum and the floor were two good friends… first of all I was in an ordinary wheelchair that wasn’t electrified and [because I could only use one hand] I was so bad that I was going around in circles all the time… so I asked for a power chair.”

“I could go out, and I would kind of go and get the bus and do shopping, and I’d go down to Dunnes in Cornelscourt. I’d wheel down and get the taxi back.”

Over the years, Carmel has met many people who have multiple sclerosis, each one of whom deals with their illness differently.

A common by product of a disease like MS is anger, she explains. One man was so angry that he was “treating his wife like a slave”, she says.

“I said, will you for God’s sake just take a chill pill. Just calm down.”

“He said but I have MS. I said ‘tough s**t, join the club’.”

But when she had to give up driving, that was a tough day, she explains.

“There are people with MS who can’t do a thing, and that would kill me. If I couldn’t speak, that would be the worst if I couldn’t speak. My (other) hand did go for a while and that was the worst, and I couldn’t chew…. But thank God now my throat is OK.”

“It killed me [to give up driving]. I knew that I couldn’t, I was too frightened. I knew I wasn’t safe… I thought ‘OK Carmel, you’ve pushed your luck too far, give it up now’.”

“Your memory can become very bad, and it’s through no fault of your own. A lot of people with MS, think ‘how could you be so stupid?’... but then you think, it’s not your fault, it’s your MS.”

She added: “It annoys me when I can’t remember people’s names. I used to be great, but not now.”

“I get a spate of kidney infections. Three or four times in a row, and then thank God they stop.”

Now, in her apartment in Dun Laoghaire, Carmel finds solace in simple things like the few cigarettes everyday she allows herself, the odd bar of chocolate, and the Superquinn sausages and a batch loaf that her brother buys her.

“It can be very boring, because whether you like it or not, with the chair you can be very restricted where you can go.”

“Dun Laoghaire is really difficult because of the paths and the cobbestones.”

“I don’t mind being on my own. If I get really p***ed off I can ring for a staff member and they’ll come in for a chat.”

A degenerative illness like MS raises questions about your mortality, Carmel admits, and she has thought about her wishes for her funeral.

“I do think about it, but then I think is there any help. I say to the kids it’s going to happen to me one day you know… it could be years and years, but it could be weeks and weeks, we just don’t know.”

“Death was around me since I was ten… it happens, life can be a b**ch, but it happens.”

“I know for definite I want to be cremated…,” she said. “I don’t know where I want to be laid… buried at sea, or in the family plot, I don’t know.”

The first six years of her childhood were spent in Iraq, she remembers, where her father worked as an aircraft engineer. Those memories now, she treasures.  

When the family returned to Ireland, Carmel’s 22-year-old brother was killed in a motorcycle accident. Grief is something she has known since an early age.

Now, as she sits with her memories, she looks forward to visitors.

“By about 6pm I start to slur a bit and I think people will think, well she’s had a drink or two… the amount of times I’ve said, ‘look I’m not drunk, I have MS’.”

“It makes life a pain in the ass.”

Over 800,000 Irish people are living with neurological conditions and some of those conditions are life limiting. A new booklet to help people with advancing neurological illnesses to plan for all aspects of their future was launched last month. You can download the booklet "Planning for the Future: Information For People Who Have An Advancing Neurological Illness" here.

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