Walking the Camino is enough of a challenge without your guide starting out by taking you 16 kilometres in the wrong direction; it’s equally not made any easier if you are still on the road to recovery from critical heart issues that might have prematurely ended your life.

But these are only minor obstacles to Galway woman Siobhan Cunningham who is now back home in Loughrea, having walked 132 kilometres – not to mention 16 kilometres more – to help raise funds for CRY Ireland (Cardiac Risk in the Young) as a thank you for helping to save her life.

Because Siobhan was diagnosed with PoTS syndrome in September of last year – after over a year of critical illness and being misdiagnosed or not diagnosed correctly.

Postural tachycardia syndrome, also known as postural orthostatic tachycardia syndrome (PoTS), is a condition that causes an abnormal increase in your heart rate after sitting up or standing up.

It is a form of dysautonomia — a disorder of the autonomic nervous system. This branch of the nervous system regulates functions we don’t consciously control, such as heart rate, blood pressure, sweating and body temperature.

The most common symptoms are feeling lightheaded or dizzy, palpitations and fatigue.

All of that left the single mother of one effectively bedbound and devoid of energy or her usual indefatigable zest for life.

She has already spoken publicly about her diagnosis and her path to recovery – a path she’s still on – because her disability is an invisible one. And she just wanted people to realise that not everyone with a disability or reduced mobility shows outward signs of that.

Because while she shows no signs of having any issues, there were times, she says, when her heart was beating to hard and fast that she was sure she was going to die.

The turning point in many ways was when she connected with CRY Ireland, with its special unit in Tallaght – and their Family Support Programme Coordinator. NUIG graduate Elaine Whelan.

“She is an amazing, kind human being, who listened and knew what I needed without me having to say it. She organised for me to speak to one of their therapists and within a couple of weeks I felt more like myself then I had in 18 months,” says Siobhan.

“I went from walking around the back of my garden for ten minutes a day, to walking around my estate, to now branching out and doing little walks independently.”

So when the prospect of a longer walk arose – the Camino for CRY – Siobhan was up for the challenge despite the reality that extended periods on her feet lead to abject fatigue and inflammation of her hands and legs.

“CRY saved me in many ways but most of all because it was through CRY that I got a cardiac MRI in the Blackrock Clinic. The €750 cost of that was covered in full by CRY – as is the upcoming review of that 18 months on from the first one to see if there has been a change to the scarring around my heart,” she says.

So the 37-year-old signed up to join 27 other Irish walkers on the Camino; a few from Galway but really a scattering from all over, all of whom had their own reasons to want to do their bit for CRY.

They began in the city of Ferrol in Galicia at the end of the first week in September and ended up eight days later at their destination of Santiago de Compostela, with Siobhan’s own fundraising efforts earning over €4,500 for the charity.

The walk took it out of her – to the point that she’s adamant she’d never do it again. The undulating landscape was tough for all of them but on top of that Siobhan had to take regular breaks and just lie down on the side of the road to ease the inflammation in her joints.

“I have Venus pooling from been bedbound for so long, my calf muscles are not strong enough to push the blood back up to my heart fast enough and this causes blood pooling in my feet,” she explains.

“For me to just stand for a few minutes causes my heart to work three times harder than anyone else.”

It was also tough because – aside from her time spent in hospital – this was the only time she has ever been away from her son Callum.

“We stayed mainly to our own group but every day I kept meeting this young boy who reminded me so much of Callum – and I was missing him so much. We got into a thing of just ‘high fiving’ each other when we met.

“I was a bag of nerves going over; missing Callum, worried on the flight – and to be honest, my motivation to keep going was that I just wanted to get it done.”

But now that it’s over, it’s another milestone on the path to recovery – even if she her exertions saw her back in hospital for three days on her return home.

“There’s a thing that, when you’ve been ill, you feel that you have to make the most of a second chance – to live your life different to the way it was before. And to be honest, that’s exhausting.

“But it’s all about getting out of your comfort zone and then doing things you’d never think you’d do in your life. But I’m super proud that I actually finished it and gave a little back to CRY.

“When you’re confronted with serious illness, you can either sit down and feel sorry for yourself or get up and show that you’re a survivor. I still have this condition but it won’t beat me – and that’s why something like this is so important to me.”

And her inspiration for it all is Callum.

“Everything I do I do it for my son. I know he’s watching me; the little people are always watching us and I hope I inspire him to keep going in life,” she says.

“I hope he knows for the rest of his life to never give up, to keep moving forward; even if life doesn’t go to plan we can still turn it around and live it well.  I’m wholeheartedly proud of my son because he had to face some challenges he never asked for and over comes the struggles he had to face having his momma sick. I’m proud of us both.”

Pictured: Wearing their colours…the Camino for CRY walkers in their home sporting kits (from left) Marie Hurley, Maeve Butler, Bridie Beaveas, Shauna Bohan, Liam Hurley, Kevin Tuohy, Axmed, Jim Chawke, Siobhan Cunningham, Bernard Cumiskey, Jude Bromley, Kay Chawke, Catherine Clancy, CRY Ireland CEO Lucia Ebbs, and Nora Power,