We know pain that Radio 4's Kirsty is facing with fibromyalgia
After Desert Island Discs presenter Kirsty Young announced she was taking a break from the Radio 4 show to seek treatment for fibromyalgia. Una Brankin speaks to two NI people living with the chronic condition.
Kirsty Young's millions of listeners were shocked last week when the BBC's Desert Island Disc's presenter announced she was leaving the programme to seek treatment for fibromyalgia, a painful long-term chronic illness which is estimated to affect 10% of the population in Northern Ireland.
The singer Lady Gaga and actor Morgan Freeman also suffer from the condition, which is characterised by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues.
Triggered by physical or psychological trauma, fibromyalgia remains a misunderstood illness, as sufferers Michael Flood and Margaret Peacock can both confirm.
'I became ill after a loyalist gunman put a pistol to my head, now I can't even get out of bed some days'
Former accountant and financial director Michael Flood (51) was diagnosed with fibromyalgia in 2016. He lives alone in north Belfast, with the support of carers, family and friends. Michael developed a severe form of fibromyalgia as a result of the PTSD (post-traumatic stress disorder) he suffered in the aftermath of a narrow escape from death at the hands of a loyalist gunman in July 1998. He says:
It was my 31st birthday, on July 9, 1998, at the height of the protests against the Garvaghy Road marching ban and the Good Friday Agreement. I'd nipped out from my house on the Lisburn Road in Belfast to get a burger and a carton of milk but everywhere was closed. Cars were burning and helicopters were circling overhead. The only place that was open was Julie's Kitchen, near the Village area, which was under siege. When I came out, this guy with a spider tattoo on his neck came up to me and said: 'What's the password?' I asked him what he meant, and he said: 'Manchester…?'
I said I hadn't a clue what he was talking about and the next thing he put gun to my head, but it jammed. I lost control of my bladder, unfortunately. He stood there smacking the gun, saying 'I hate when that happens', calling me a f***ing fenian. There was another guy there with a knife and my fight-or-flight response kicked in. I ran as fast as I could to the City Hospital. (I found out later the password was 'Manchester United' but they could tell I was a stranger, anyway).
I reported the incident to the police and they asked me to come down to Donegall Pass for a line-up. The guy was one of the 10 - none of the rest looked anything like him - and he glared me out. There was no two-way glass; he could see me. I had to tell the cop I couldn't identify him and I had to move from the Lisburn Road after that. I was in bits.
I had to take six months off work sick. I was glad to get back to work, as it took my mind off my symptoms, but I was a very different version of myself outside the office. By 2003, I couldn't continue, and had to retire.
I've been in a steady decline ever since. I have mobility issues now and have to use an ambulator to walk to the shops. I have male carers for personal matters and others who come to clean. Sometimes it's a struggle to tie my shoelaces.
On a scale of one to 10, I'm a 10 in terms of the severity of fibromyalgia. It's really bad. I can semi-function some days; on others, I'm confined to bed. It took so long to get properly diagnosed.
Fibromyalgia doesn't show up in blood tests and GPs often can't put a name to it. It's invisible, there are no obvious outward signs. In fact, it's so misunderstood that many think it's laziness or hypochondria.
I soldiered on until it got so bad that I had to really push my GP to get to see a consultant. He identified what he described as 'chronic persistent pain' all over my muscular structure and joints and started me on a journey of medicinal trial and error. Nothing worked for me, but not every patient is the same. The last option was to put me on 200mgs of Tramadol, which is a very strong drug, to ease the pain. The next step is morphine, when it becomes unbearable.
People say I look young for my age but inside I feel totally drained and unable to contribute anything to society. Low moods, sleeplessness and cognitive problems - you can't remember everything - are part of the condition. I was always a high achiever and very meticulous; it's thought that particularly intelligent people are most affected by fibromyalgia.
It takes a bit of time for family and friends to realise how much pain you are in. They get fed up with your continual cancellations. You have to make up excuses for not meeting up - you tell whoppers instead of complaining about the pain.
You go through the stages of rage and regret, before you come to an acceptance. I've always been a very spiritual person and that has carried me through. I see that loyalist's action towards me as part of his journey, and a learning experience for me. I'd rather see a complete amnesty for people like him, rather than carrying such a burden in my heart. If justice had been done, it might have stopped him doing this to someone else, but imprisoning him won't alleviate my pain.
In the end, fibromyalgia makes you more circumspect and reflective. You see that society needs to be a bit more caring and understanding. In practical terms, the condition needs to be diagnosed faster. GPs and social services need to be more aware of how debilitating it is. It's a struggle to gain recognition for benefits and pensions, never mind specialist treatment.
Medical cannabis can help fibromyalgia in a similar way to epilepsy - the actor Morgan Freeman has stated he couldn't act without it. I'd be first in the queue if they legalised it here. You can get it in tablet form as well. When Stormont - eventually - gets up and running again, I hope to convince the charity to lobby for medicinal cannabis for fibromyalgia.
The cannabis oil that's available in health stores only takes a little bit of the edge off. It's not strong enough for this level of pain. The health service needs to go one step further in making the more potent properties of the cannabis plant - which don't make you high - available for pain relief.
In the meantime, the counselling and CBT (cognitive behaviour therapy) I receive from the charity has been immensely helpful. They have no government funding for their services, yet those voluntary workers provide a lifeline for me and so many others affected by this terrible condition. I don't know what I'd do without them."
ew gave me a hug and I crumbled in pain'
Margaret Peacock (70) is the director of Fibromyalgia Support Northern Ireland (FMSNI), a non-profit organisation dedicated to providing help and support to fibromyalgia sufferers and those who care for them. A former social welfare officer from Coleraine, Margaret has been a carer for 33 years to a former colleague she took into her home, despite suffering from fibromyalgia since she was 45. Margaret says:
I was out on O'Connell Street in Dublin to celebrate New Year's Eve with a group of girls 25 years ago and I started to feel very faint. I went back to the hotel and the next day began to vomit.
I then developed a chronic pain in my side - the worst pain I'd ever felt in my life.
I was rushed to hospital and had a gallstone removed. That left me in a wheelchair for eight months. I lost six stone in weight. I'd lie in the foetal position and had no energy at all. I couldn't have coped without my friends. Yet one doctor diagnosed me with constipation.
Indigestion is part of fibromyalgia. When I was eventually diagnosed at a private clinic on the Lisburn Road, I was just thankful that it wasn't cancer. But to be honest, anyone with fibromyalgia has no life at all.
So I went to a support group in Coleraine.
There was a 28-year-old girl there in a wheelchair, which really took me back.
I began to help the group with getting benefits, due to my background in social welfare, and ended up in charge of the Belfast branch in 2002.
It was physically difficult to meet the challenge but I just made myself do it.
I've tried various types of medication, patches, anti-inflammatories and anti-depressants.
One of the side effects is brain fog. It just hits you out of the blue and you can't remember what you were talking about.
During a flare-up, it's like waking up with the worst flu you've had every day.
You have headaches and heartburn and a burning pain in your very fingernails.
You have knots in your neck and the backs of your legs, because of the inflammation of the nerve endings.
To be honest, I was out working and also caring for Liz and her father, who both came to live with me, and I just brushed the stress of it all aside.
I'd cry with frustration trying to get help for people and my body broke down.
I began to need help to get into the shower. I broke my ankle in three places once when I fell into it.
Another time, my nephew gave me a hug and I crumbled in pain. It affects physical relationships - many husbands leave their wives because of it.
It invades your whole life.
The problem is, people don't understand the pain that comes with fibromyalgia. Doctors sent people to me when what is needed is a specialist clinic and training for GPs.
We have no government funding but thankfully we have the support of a thrift shop which was given to us by a man, Robert Dunlop, whose father was severely affected by fibromyalgia.
But it's up to Stormont to get their act together and provide the resources so badly needed, not just by our charity, but all the other voluntary organisations struggling to survive across Northern Ireland.
I can only thank Kirsty Young for bringing awareness to fibromyalgia.
It's badly needed."
A condition that can last a lifetime
Fibromyalgia (pronounced fi-bro-my-al-juh) is a widespread musculoskeletal pain and fatigue disorder. The precise cause is still unknown.
Associated with physical or psychological trauma, fibromyalgia literally means pain in the fibrous tissues in the body.
Most patients with fibromyalgia say that they ache all over. Their muscles may feel like they have been pulled or overworked.
Sometimes the muscles twitch and at other times they burn.
More women than men are afflicted with fibromyalgia, but it shows up in people of all ages.
Musculoskeletal pain and fatigue experienced by fibromyalgia syndrome patients is a chronic problem, which tends to have a waxing and waning intensity. There is currently no generally accepted cure for this condition.
According to recent research, most patients can expect to have this problem all their life. However, worthwhile improvement may be obtained with appropriate treatment. There is often concern on the part of patients, and sometimes physicians, that fibromyalgia is the early phase of a more severe disease such as multiple sclerosis or systemic lupus erythematosus.
Long-term follow up of patients has shown that it is very unusual for them to develop another rheumatic disease or neurological condition. However, it is quite common for patients with established rheumatic diseases, such as rheumatoid arthritis, systemic lupus and Sjogren's syndrome to also have fibromyalgia.
FMSNI (Fibromyalgia Support Northern Ireland) operate an information line manned by volunteers.
Tel: 088448 269 024. See www.fmsni.org.uk/index.php/helpline and the FMSNI Facebook page.