ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
"I Didn't Know What Fibromyalgia Was – I Had To Google It To Find Out"
Friday 17 April 2015
I didn’t know what Fibromyalgia was - I had to google it to find out
However the Derry woman was forced to quit her job when severe fatigue, dizzy spells and fainting episodes made it impossible for her to continue work.
What Sinead didn’t know was that she was suffering from Fibromyalgia, a condition she had never even heard of.
The 36-year-old has now used her experiences to pen her first book, Children of the Oak, fulfilling a lifetime’s ambition to write her own novel.
“My fatigue was so bad I could barely lift my head,” said Sinead. “I hadn’t been well for a few years but I thought I was just having bad bugs and bad flus. Then for a few months at a time I would get severe fatigue. I was eating my lunch one day and my head was almost on the desk, I could barely keep talking.
“I collapsed in school in 2010, and they thought I’d had taken a stroke. I had dizzy spells and felt pressure on the back of my head.
“I had all sorts of tests done but they couldn’t find anything, all my blood tests were coming back normal. I just thought I was tired.
“I began to withdraw from a lot of social things, I couldn’t cope with work or socialising, where it was supposed to be fun, I found it a total nightmare because I was so exhausted. When I came home at night I had to sleep for a few hours.”
It took years for Sinead to get her diagnosis of Fibromyalgia, a diagnosis that finally came in 2014.
“I had been referred to the rheumatologist, but at that point I had been referred to so many people. I was sent to the TIA clinic, the neurologist, and then I was sent to the Royal for a lumbar puncture.
“I thought I was a hypochondriac, it was the same thing that kept being said to me, we can’t find anything, you’ve a strong heart. I was left going out the door relieved on one hand that there was nothing serious, but totally baffled on the other hand about why I felt so bad.
“The pain really started to kick in the last few years and because it was so widespread I kept asking myself if I was losing it and if I had imagined it. So I was questioning my own mental health.”
When the word Fibromyalgia was mentioned Sinead did what most people with an inquisitive mind do - she googled it.
And she says today she still struggles to explain the condition to people who don’t know what it is.
“I usually tell people it is a condition that has chronic fatigue and chronic pain and I get sore joints and muscles. I explain that Fibromyalgia can affect your ability to think, and your speech, especially when I am tired, it can be almost like I am speaking another language.
“I think that’s partly why my family thought I’d had a stroke.
“Simple activities become mammoth. A simple activity like brushing my teeth can leave me wanting to crawl back into bed exhausted.
“Physically there are days when I feel like I am trapped in the body of a 90 year old and I am screaming inside - why I can’t have a normal life?
“It’s a relief now to have a name for my condition, this is what I have.
“The GP put me on medication part of which is anti-depressants to supress the nervous system to allow the pain messages to get through.
“My self esteem was so far down it was scary, I pulled away from any friends or social situations unless I was with family. I felt I had nothing to offer. When people asked me to explain Fibromyalgia, it sounded like a made up thing. I couldn’t deal with judgement.”
In 2011, Sinead took the difficult decision to give up her job.
“My job was my life,” she said. “It was all I knew, it was my career. It was a huge decision and I really wrestled with it for a long time. I knew I couldn’t go into the job and do my best every day.”
There is no cure for Fibromyalgia, but Sinead is now finding a way to go forward coping with it.
One of the ways Sinead found to move forward was writing - a form of escapism she said she began to love as a child.
“It was a dream to write my own book,” said Sinead. “I had always written short stories and poetry. I always had this restlessness. I had a notebook by the bed because I always had very vivid dreams and I would write down ideas. I began to find a love again for writing poetry.
“In the end of 2011/12 while I was still trying to work out what was wrong with me, I took part in a condition management programme and started tutoring. I loved it. I felt I was gaining my self respect back again.”
But suddenly Sinead’s father Seamus became very unwell and Sinead and her mum became his full-time carers.
“We lost dad in 2013,” said Sinead.
“I fell apart. He was my hero and then he wasn’t there anymore. He was my protector when I wasn’t well. He kept telling me we would get it sorted and always told me he would look after me.
“He was great for advice, he gave great solid advice. When I lost him I just became so vulnerable and frightened and actually felt I had gone back a few years. But worse because it was such a shock to lose him.
“When I lost him I relapsed. I was nauseous all the time, I would faint if I went out. I was hardly functioning. I was at my lowest. I had no self worth, no friends. My only support was my family. They were brilliant but they were also grieving.
“But I was driving myself crazy thinking so much. On Father’s day I picked up a pen and started writing poems and the anger came out of me about losing my daddy. Raw hurt and anger. I felt so much better afterwards.
“I had started writing Children of the Oak years before, because I wanted something for me to be proud of. I knew I wanted to write something about the walls.
“I just wanted to get home to start the process of getting something solid written down. This was my medicine. From then I began to live in that world of Children of the Oak and I was living in it.
“I knew I had to finish it. I fell in love with the story again and with writing.”
Children of the Oak is a magical adventure set in Derry telling the story of good versus evil.
It is based on the premise that the walls of Derry have magic within them and on the 400th anniversary of the walls the magic is up for grabs.
Sinead said that just before the first anniversary of her father’s death she fell apart again.
“I sought counselling,” she said. “I knew I needed help. The counsellor was brilliant and really focussed me again and explained things about why I was feeling that way.
“My mum and sisters were brilliant but there things I couldn’t talk about to them about but I needed to get them out. Unloading to someone just helped so much.”
“My Mum always said to me there’s a book in you Sinead, she always believed I could do it. I had such a sense of achievement when I wrote The End.
“Now when I look up Kindle books and see my name I have such a sense of achievement and say - I did that.
“Fibromyalgia changed my life. It has taken me down another road, another path I was guided to. I am excited about it. I feel I have a purpose again and I hope some day to be earning a good enough amount of money to pay back and look after my mammy who has just been amazing.”
The above originally appeared here.
blog comments powered by Disqus