Countrygirl
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The Belfast Telegraph has printed the stories of a number of ME patients today in Northern Ireland. I have pasted the Joan's story below for ease of reading.
https://www.belfasttelegraph.co.uk/life/health/whats-wrong-with-me-ni-people-on-living-with-the-illness-39325569.html?fbclid=IwAR2KmhOMbtSGq87_ztsOYsyhs6w_tT91VUl3y9c2qqe_S7P5G7kGmz3H-M8
Former school meals supervisor Joan McParland, from Bessbrook, has had ME since 1999 and is the founder of Hope 4 ME & Fibro Northern Ireland. She is married to HGV driver Thomas and they have one son, Stephen (32).
Joan McParland
"Overnight, I went from being 100% well to waking up severely disabled," she says. "Sometimes I'd have picked up a tummy bug off the kids at school but this was different. It felt like food poisoning, flu and a tummy bug."
The doctor thought it might be viral labyrinthitis (an inner ear condition) and warned Joan that she could be off sick for six weeks. But she ended up bed-bound for 12 months.
"Calling this disease chronic fatigue syndrome or extreme tiredness is an insult to ME patients and very far removed from what I was experiencing," Joan says.
"I was crawling on my hands and knees to get to the bathroom and my husband used to carry me to the living room to break up the monotony of being bed-bound 24/7 for the first year.
"I was too weak and too nauseated to eat, so I suffered a dramatic weight loss and effectively looked like I was dying - and it most certainly felt like it too. The whites of my eyes had turned yellow, as had my skin, and the most frightening experience was the almost daily periods of transient paralysis, when I couldn't speak or even turn in my bed for hours at a time.
"The onslaught of symptoms included muscle weakness, dizziness, nausea, headaches, fainting, digestion problems, new food and medication allergies, alcohol intolerance, muscle and joint pain, sensitivity to light and noise, an inability to be upright due to orthostatic intolerance and cognitive symptoms including short term memory loss and confusion."
Her doctor suspected it could be ME but, because there was no ME specialist in Northern Ireland, Joan had to be driven to a variety of consultants to investigate her individual symptoms.
Joan with son Stephen
She was even advised to go to a psychiatrist and did so: "I learned how to do deep breathing and that was it - I was left none the wiser."
After a year, her symptoms began to abate a little and Joan decided to push through the pain and fatigue and return to work.
"I staggered my way back to work, drinking down bottles of anti-nausea medicine just to try to stay upright. I tried reducing hours, going straight to bed when I got home and spending every weekend in bed until the following Monday morning started again," she recalls.
"The illness finally beat me again and again and, over time and three collapses later, the result was being trapped in my bedroom for the following seven years.
"Those years were spent without a choice of doing anything, except trying to figure out what had gone so horribly wrong that I'd lost my career and social life and, most importantly, I could no longer care for my family."
After her family bought her a laptop, Joan began researching ME, learned about a self-management regime called pacing and began using a heart rate monitor to manage symptoms.
"Over a further three-year period, I very gradually improved enough to be able to be upright for a few hours most days. I quickly learned that if I tried to push outside this small 'energy envelope', I would quickly relapse and end up completely bed-bound again," she says.
"It's the hardest thing in the world to rest when there's so many things in life you want to do, but the consequences to an ME patient are horrific, if you don't listen to what your body is dictating."
In 2011, Joan set up Hope 4 ME & Fibro Northern Ireland which campaigns to address gaps in ME healthcare provision and knowledge in Northern Ireland. ME is still not included in medical training.
The charity is calling on the Health & Social Care Board and Public Health Agency to help circulate a new CPD Accredited ME Training Module, and is completing a booklet on managing ME in a joint project with a group of UK NHS physiotherapists.
"No doctor wilfully goes out to cause harm but ME is an example of why and what happens when science just hasn't caught up," Joan says. Joan says she is optimistic about the new research project.
"It's given us hope that the Medical Research Council is investing money into the physical aspects of the disease, rather than the psychological aspects," she says.
"I'm very optimistic because the Holy Grail for us is a diagnostic marker that will take away all this disbelief - you're constantly trying to prove this disease is real."
https://www.belfasttelegraph.co.uk/life/health/whats-wrong-with-me-ni-people-on-living-with-the-illness-39325569.html?fbclid=IwAR2KmhOMbtSGq87_ztsOYsyhs6w_tT91VUl3y9c2qqe_S7P5G7kGmz3H-M8
Former school meals supervisor Joan McParland, from Bessbrook, has had ME since 1999 and is the founder of Hope 4 ME & Fibro Northern Ireland. She is married to HGV driver Thomas and they have one son, Stephen (32).
Joan McParland
"Overnight, I went from being 100% well to waking up severely disabled," she says. "Sometimes I'd have picked up a tummy bug off the kids at school but this was different. It felt like food poisoning, flu and a tummy bug."
The doctor thought it might be viral labyrinthitis (an inner ear condition) and warned Joan that she could be off sick for six weeks. But she ended up bed-bound for 12 months.
"Calling this disease chronic fatigue syndrome or extreme tiredness is an insult to ME patients and very far removed from what I was experiencing," Joan says.
"I was crawling on my hands and knees to get to the bathroom and my husband used to carry me to the living room to break up the monotony of being bed-bound 24/7 for the first year.
"I was too weak and too nauseated to eat, so I suffered a dramatic weight loss and effectively looked like I was dying - and it most certainly felt like it too. The whites of my eyes had turned yellow, as had my skin, and the most frightening experience was the almost daily periods of transient paralysis, when I couldn't speak or even turn in my bed for hours at a time.
"The onslaught of symptoms included muscle weakness, dizziness, nausea, headaches, fainting, digestion problems, new food and medication allergies, alcohol intolerance, muscle and joint pain, sensitivity to light and noise, an inability to be upright due to orthostatic intolerance and cognitive symptoms including short term memory loss and confusion."
Her doctor suspected it could be ME but, because there was no ME specialist in Northern Ireland, Joan had to be driven to a variety of consultants to investigate her individual symptoms.
Joan with son Stephen
She was even advised to go to a psychiatrist and did so: "I learned how to do deep breathing and that was it - I was left none the wiser."
After a year, her symptoms began to abate a little and Joan decided to push through the pain and fatigue and return to work.
"I staggered my way back to work, drinking down bottles of anti-nausea medicine just to try to stay upright. I tried reducing hours, going straight to bed when I got home and spending every weekend in bed until the following Monday morning started again," she recalls.
"The illness finally beat me again and again and, over time and three collapses later, the result was being trapped in my bedroom for the following seven years.
"Those years were spent without a choice of doing anything, except trying to figure out what had gone so horribly wrong that I'd lost my career and social life and, most importantly, I could no longer care for my family."
After her family bought her a laptop, Joan began researching ME, learned about a self-management regime called pacing and began using a heart rate monitor to manage symptoms.
"Over a further three-year period, I very gradually improved enough to be able to be upright for a few hours most days. I quickly learned that if I tried to push outside this small 'energy envelope', I would quickly relapse and end up completely bed-bound again," she says.
"It's the hardest thing in the world to rest when there's so many things in life you want to do, but the consequences to an ME patient are horrific, if you don't listen to what your body is dictating."
In 2011, Joan set up Hope 4 ME & Fibro Northern Ireland which campaigns to address gaps in ME healthcare provision and knowledge in Northern Ireland. ME is still not included in medical training.
The charity is calling on the Health & Social Care Board and Public Health Agency to help circulate a new CPD Accredited ME Training Module, and is completing a booklet on managing ME in a joint project with a group of UK NHS physiotherapists.
"No doctor wilfully goes out to cause harm but ME is an example of why and what happens when science just hasn't caught up," Joan says. Joan says she is optimistic about the new research project.
"It's given us hope that the Medical Research Council is investing money into the physical aspects of the disease, rather than the psychological aspects," she says.
"I'm very optimistic because the Holy Grail for us is a diagnostic marker that will take away all this disbelief - you're constantly trying to prove this disease is real."