Carers Week: Sinead Tighe has learned that self-care needs to be top priority
When I sat down to chat to Sinead Tighe, I was immediately drawn to her warm smile and her relaxed nature, reports Ursula Frawley, The Echo’s Health & Fitness columnist.
Sinead is the mother and full-time carer for her 17-year-old son, Daniel.
As she began to tell her story, I was fascinated by her journey over the last 18 years, which she shared so openly – all to highlight the need for carers to look after themselves both physically and mentally.
Sinead’s story began with an uncomfortable pregnancy, especially in the last few months, followed by the difficult birth of Daniel, delivered at 12lbs 1oz.
In those early weeks after Daniel’s birth, her strong mother’s instinct was telling her that something wasn’t right.
Although she was fobbed off by nurses and doctors as having post-natal depression, at his 6-week check she insisted that she had big concerns.
On that Friday afternoon, she faced into the weekend with a series of appointments scheduled to attend Crumlin the following Monday.
This began the rollercoaster journey of the first year of Daniel’s life, in which Sinead watched specialists and doctors give no conclusive diagnosis, still leaving Sinead with a strong sense that something lay ahead.
This prompted her to start writing every symptom down and continue on with a ‘wait and see’ approach. In this first difficult year, Sinead navigated this new world, while also trying to be present for their 3-year-old daughter Shauna.
At no stage, did Sinead ever think of herself.
From month to month, she was told to be hopeful but never was given full answers.
When Daniel was 18 months, they met with the neurologist, who Sinead describes as the ‘best’ doctor.
He spoke in a caring manner, using terms and language they could understand.
This doctor suggested Sotos Syndrome, as he had extensive growth challenges, with bone overgrowth, and this was then confirmed when she was referred to a geneticist.
The consequences of one specialist telling her that this came from a ‘bad egg’, left Sinead with a long-lasting feeling of guilt. As a mother, she was now grappling with a guilt, with no space to articulate this.
She held that guilt inside, and now began navigating this new, challenging and complicated world of appointments, support and early learning services.
Again, the emotional and physical toll was huge, but Sinead wasn’t thinking of herself.
With Daniel now 2 years of age, another ‘saving grace’ doctor came on board and supported them in understanding how to fight for services and never give up.
To find the right support and environment for Daniel seemed like a puzzle with so many pieces.
They decided Child Vision was the best suited playschool, however this meant a journey to Drumcondra 5 days a week to attend playschool for 2 hours.
Every day, Sinead walked around the area alone during the short time Daniel attended school. She spoke to nobody about how challenging and lonely this time was.
On the outside she looked so capable, and taking it all on in her stride. Daniel then progressed to school at St Joseph’s, which was a great transition to support him and his needs.
However, she now had to give up work and had to adjust to her new job as a carer – a more difficult concept to come to terms with when it is your own child.
Sinead was really struggling, so when a friend suggested she join a fitness club, she did and also started running and starting to do the parkrun every week.
She also now undertook a course as a fitness instructor, leading into teaching fitness every week, as well as running.
As Sinead describes, running was sorting out her head, so, along with fitness, she joined a running club and started racing.
For 10 years, she was running with Daniel, on her own and in races, as well as teaching numerous fitness classes.
She had tried counselling for a while, along with psychotherapy to help navigate the emotional rollercoaster of full time caring, but both only scratched the surface.
However, she was running and felt that was all she needed.
During Covid, Sinead continued to run and train, along with her long hours caring for Daniel.
Then, in 2023, her body started to give her loud messages that enough was enough – both mentally and physically.
She could feel her body changing and not responding as it used to. Her right arm was struggling to move, and while running one day, her face started to tighten up, which really concerned her, but after a rest that night, she simply got on with her busy life.
However, shortly afterwards, she attended a research study on carers, where she was medically assessed and was told she had a 1st degree block in one of her arteries, which she was told could be a cause for concern should it get any worse.
She kept this to herself, as this happened in the middle of a very difficult summer caring for Daniel.
After finally sharing how much she was struggling with her husband Keith, he brought her straight to the GP, where she was diagnosed with chronic fatigue and, was now feeling the effects of training through exhaustion.
She was told to stop everything immediately.
Now, with counselling, rest and reflection, Sinead has realised that she medicated herself through exercise, and her caring responsibilities alone were taking such a toll on her body, that it finally just stopped functioning.
Her body was now screaming for rest.
She hadn’t recognised that during all her daily responsibilities, she needed to be kind to herself and acknowledge the mental and physical strain that her job takes on her body.
As Sinead so eloquently puts it, although she was using the tool of exercise to help her, it had now backfired.
She now looks back and understands that before she did any running in a day, she had nearly 10 miles clocked on her Fitbit just caring for Daniel.
Sinead is now dealing with the elements of trauma from her journey and is carefully unlocking all the messages her body has taken in over the last number of years, in order to heal before she can consider running again.
From all her years of experience and wisdom, what advice would she give to carers to avoid hitting rock bottom?
Sinead urges all carers to take support any way that they can. She also encourages people to recognise and allow feelings of guilt, envy and grief.
For those that are in the early years of caring, she strongly encourages carers to please start to take it slowly, not rush the process and actively take steps to rest along the way.
It will be a more enjoyable journey if you try to enjoy time with your child and take time for you.
For example, if your child is gone to school, she actively encourages you to sleep first and rest.
If she could go back and talk to Sinead 10 years ago, she would have helped her acknowledge that her body will need rest and she doesn’t have to fight every hour of every day.
Sinead now looks forward to a new summer with Daniel, with an organised schedule of care hours and scheduling time with her husband Keith, along with friends and family.
She will ask for support from those she knows can help. She has also expanded the running team with Daniel, training them in order to start letting him go as he grows into adulthood.
Sinead is now realising that she needs to start to be selfish and she urges all carers to start re-discovering their own self-love too.
Carers week is from 10th – 16th June with events running all over Ireland.
