Galway mother walking 500km to raise awareness of son's debilitating health condition

Gavin Connolly, who has had ME. His mother Edna Mac Namara is currently fundraising for a research fund for the condition.

A Galway mother is planning on walking 500km over five months to raise awareness of her son's debilitating health condition. 

Edna Mac Namara's son, Gavin Connolly, has myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome.

Symptoms of ME include excessive fatigue and profound exhaustion, which cannot be alleviated by rest.

Gavin and others experience chronic pain, sensitivity to light, memory, cognitive and gastrointestinal issues.

Gavin, like many other people with ME, also has problems with his pulse and blood pressure, which leaves him feeling faint or dizzy when sitting upright. This is known as POTS (postural hypotension).

In 2013, Gavin was 20 and in his second year of college. That year, he caught glandular fever, also known as Epstein Barr virus, which developed into ME.

Gavin is now 27 and has been house-bound for almost two years. 

However, he was not formally diagnosed with ME until September 2018, almost five years after he initially started to experience symptoms

Before he was diagnosed, he was advised to "push through it" and undertook cognitive behavioural therapy. 

"That is the way it was dealt with seven years ago, but now that has been proven as the wrong thing to do," said Ms Mac Namara. 

"Pacing in very important, because if you over-exert yourself, you can suffer a setback."

Gavin Connolly with his cat, Felix. Ms Mac Namara says Felix sits beside Gavin every day.

Gavin initially tried to go back to college part-time, but Ms Mac Namara says he was barely able to get through his lectures. 

"He wasn't able to make friends, go to social events at night. It was like half-living, as any major exertion would cause a set back, often referred to as a crash."

She said her family has been in a sort of lockdown for two years now. Gavin isn't well enough to go anywhere, only leaving the house for medical appointments.

Gavin said ME has changed his life entirely. 

"You cant tell how I'm feeling just by looking at me. At my worst, I can't even move in the bed to get myself more comfortable. 

Sometimes, I don't even have the energy to ask for help

He says often he can't look after his most basic needs. 

"It robs my dignity sometimes... being an adult, and having my parents help me and accepting that is very hard. Having my two younger siblings do things for me isn't the way it should be.

"Holding a short conversation with someone can be as exhausting as if I had run up the stairs, which I can't."

Gavin also can't read any more as it is too difficult, so he uses audiobooks instead. He also can't watch a full soccer match anymore, only the highlights.

Even trying to verbalise this is causing brain fog. Can't find the words, my memory is affected. Even in my dreams, I dream I have M.E. I struggle to remember the time before I was sick

Gavin says those with ME should listen to their body. 

"Don't fight it... if people say push through it, don't. 

"They may mean well, but they don't understand the illness. Rest and rest some more. Learn to accept your limits... it's tough."  

Ms Mac Namara says the general public as well as the medical profession have a lack of knowledge about ME. 

"It took us so long to get Gavin a diagnosis.

"People think it's a choice, or that they are just a bit 'tired', and sleeping will help. This isn't a choice, it involves pain, hypertension, dizziness. It's ignored and not seen as a real condition."

She would like for more support to be given to those with ME, such as having occupational therapists visit the home. She would also like to see medical professionals receiving more training on ME.

She adds that studies on the aftermath of SARS showed that there was a link between the virus and patients developing some sort of post-viral fatigue syndrome, similar to ME.

Therefore, the health service should be resourced to deal with any new patients presenting with long Covid, and people should be aware of how to look after themselves if they are experiencing these symptoms.

Mac Namara started her walk on December 12 and will finish on May 12, International ME/CFS Awareness Day. 

All donations will go to the Irish ME/CFS Association's research fund.

You can donate via idonate.ie