Fermanagh mum sheds a light on impact of her ME diagnosis

Married to her best friend. A mother to a healthy baby boy. An adrenaline junkie, world traveller, baking enthusiast and gym lover - Laura O’Kane was living her dream life.

But after being very severely affected by ME (Myalgic Encephalomyelitis) for two years, the 32-year-old is now experiencing what she can only describe as a “living nightmare”.

For over 730 days, the Letterbreen mother-of-one has been trapped in a hospital bed, with the chronic fatigue caused by the long-term condition leaving her completely disabled and unable to care for herself.

Laura O'Kane pictured with her son. Photo by John McVitty.

‘A living nightmare’

“Living with ME is a living nightmare,” said Laura, shedding a light on the horrendous, debilitating illness that has “destroyed her life”.

“I couldn’t do this without the help of my family who have got me through the darkest of days.

“My son Arthur has been the sunshine that keeps on shining and gives me inner strength to keep fighting every day,” she said.

In a bid to help find a cure for this devastating illness, Laura’s husband, Damien O’Kane, has started a fundraiser for ME Research UK.

“Multi-system chronic diseases like ME are not too mysterious or complicated to solve. We just haven’t devoted enough resources into solving them.

“In the absence of proper government support, patients rely on charities such as ME Research UK to give us hope for the future,” said Laura.

Guidelines

Updated UK NICE guidelines in 2021 stated patients should be referred to an ME specialist team, but despite years of campaigning there is still no specific referral pathway for ME patients in Northern Ireland.

The local healthcare team have been very supportive and understanding to Laura’s needs, but there is no formal training for ME in Northern Ireland.

The family have had to seek private care outside of Northern Ireland and have to search for information from online forums.

“Although these days are not yet over, my doctor has helped me to manage my symptoms.”

Debilitating

The principal aim of ME Research UK is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS) – a debilitating illness which affects over 250,000 people in the UK, but is neither well understood nor, in many cases, properly recognised.

According to the NHS, ME can affect anyone, including children.

It’s more common in women, and tends to develop between in a person during their mid-20s and mid-40s.

Common symptoms of ME include feeling extremely tired all the time – where the sufferer may find it very hard to do daily activities, still feeling tired after resting or sleeping, taking a long time to recover after physical activity, problems sleeping, such as waking up often during the night, and problems with thinking, memory and concentration.

Some people with ME may also have other symptoms, including: muscle or joint pain, headaches, a sore throat, flu-like symptoms, feeling dizzy or sick and fast or irregular heartbeats (heart palpitations).

Severity of symptoms

The severity of symptoms can vary from day to day, or even within a day.

The symptoms of ME are similar to the symptoms of some other illnesses, so it’s important to see a GP to get a correct diagnosis.

Treatment for ME aims to relieve the symptoms. Treatment will depend on how the condition is affecting the sufferer.

While there is currently no cure for ME, there are treatments that may help the sufferer manage the condition.

It’s not known what causes ME, but there are a number of theories – for example, it may be triggered by an infection, or certain factors could make a person more likely to develop the illness.

To support Laura’s fundraiser, visit the JustGiving page entitled ‘Laura’s fundraiser for ME Research UK’.

Laura O'Kane pictured with her husband Damien on their wedding day.

As this newspaper went to press yesterday (Wednesday), the fundraising page had raised over £13,000 for the charity.

Laura wrote the following poem with the help of her father to raise awareness about Myalgic Encephalomyelitis (ME/CFS).

Do you know ME?

Do you know me?

I’m not the girl I used to be.

Once a bronzed body from head to toe. Now a pale ghost-like figure hidden behind closed curtains.

Once getting glammed up wearing figure hugging clothes was a passion. Now a loose uniform of pyjamas day and night is my only fashion.

Once strong athletic legs running miles around country roads. Now skinny feeble limbs, fixed to Wendy bed sheets.

Once healthy, happy and pain-free. Now muscles and joints filled with agony. Sensitive to the lightest touch, now even a hug is too much.

Once wining and dining, indulging in my favourite foods. Now spoon-fed purées from my bed tray, struggling to chew.

Once travelling the world with my best friend. Now being rolled across the bed by my carers until I mend.

Once independent and free to do what I choose without a fee. Now controlled by an evil illness that’s stolen my autonomy.

Once an adrenaline junkie; sky diving, whitewater rafting, scuba diving, sand dune buggy driving. Now it’s been over 2 years since I’ve been standing.

Once a baker, photographer and gym lover. Now my hobbies have been stolen from me altogether.

Once energised and ready to start the day. Now even the smallest exertion makes my body pay.

Once waking up to the sunrise and bird’s song. Now confined within the same four walls, the sound of music is long gone.

Once a caring daughter, wife and mother. Now my family take turns caring for me one day after another.

Once studying five years’ worth of dentistry for my finals. Fuzzy thoughts and forgetfulness, the clouding of my brain is relentless.

Once determined and now EVEN MORE SO! I will get back up and I will beat this foe!

For now, it’s only in my dreams I escape from this prison.

We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.

Please report any comments that break our rules.