When you find yourself describing yourself as ‘Thomas the tank engine’ in the morning, and ‘Salty’, the clapped-out engine, in the afternoon, it can mean only one thing, that you’re talking to a child about living with heart failure.
We were having a lovely week away, my daughter and I, taking in the beach, visitor attractions, and the relations on a trip back to my hometown. It was the first real time away without my boys, older now and busy with summer jobs and catching up on sporting life and friends post lockdown.
The first few days, I gave it wellie. I swam in the sea and jumped over waves and did historical tours. I was on an adrenaline role, the post pent up Covid rush of energy that comes with being ‘unrestricted’ being unleashed through my limbs. I was thrilled for my daughter that she was getting out there and experiencing fun things again. But even with the adrenaline rush of ‘freedom’, by 5.00pm each day my energy would be at 1%, a nap calling, and a need to be back at one or other grandparent’s house most days by then, where my daughter would be entertained by and entertaining same, while I slept for about two hours to recover from the output of the day.
Though I am a fortysomething woman, the fact that I was getting to 5.00pm without resting was of course great, because living with heart failure, as I do, usually means a sequence of rest punctuations in my day. That’s because heart failure is a condition where your heart doesn’t pump blood properly into or out of the heart, which means we are oxygen disadvantaged, which means those of us with heart failure get tired faster than regular people.
It is estimated there are 7,000 of us in Ireland, under 70. I know a few in this group. Our heart failure label is the same, but the scale or stage of our heart failure can be different. Some are functioning well (meds and maintenance), others need more hospital visits, some are nearing heart transplant stage.
My heart has about half the pump function of a typical adult of my age, which means that after a few hours of productivity, like a weaker phone battery, I will need to recharge, which means go horizontal for a while. Now going horizontal, doesn’t always mean a two or three hour nap. It could be just 30 mins with legs up, laptop on lap typing emails, or an hour with eyes shut and laptop closed. And it doesn’t mean I don’t go back to functioning at a high level thereafter, until the next rest period, or that I can’t complete or achieve tasks, it just means my day mechanics work a little bit different to everyone else’s, and that I have to apply Frank Sinatra’s ‘My way’ to the process.
It’s a way of life I have had to get used to over the last nine years, since first diagnosed with heart failure, the result of a complicated situation where I experienced a rare and sudden heart condition called SCAD, that was repeatedly medically overlooked and misdiagnosed, with the result that some of my heart muscle literally ‘died’ from the delay.
It was of course a shocking diagnosis to receive, and in the early days, I couldn’t do much at all, despite the fact that I came home to children aged 9, 7 and 1 month old, who needed me to be their mother. It took time, work, patience and lots of learning to get to where I am now.
But being a mother is a very physical job, even when the kids are long past the toddler stage. There are meals to cook and laundry to do and physical journeys hither and tither. There’s standing at side-lines, which tires the heart more than moving, and journeys with kids required often at the very time my body hits a wave of tired (the afternoon school run can be one such time). There are the “we need this for school tomorrow” moments when your eyelids long to close and the arguments between siblings that won’t let you rest.
And then there are the moments like last week, when you try to ride rough shot over it all for a few days physically while on holiday… but the body always comes a calling!
After a few days of pushing the boat out with the beach and the visitor attractions, the body all but gave up. Though I had been resting in the evenings, the long spells of action each day and for so many days in a row, proved too much. There was a “ahem, are you serious?” moment from my body when it seemed to announce it was going on strike with a “not today sweetheart” placard.
The trouble was, it was the day that I had promised my daughter a swim, after a few days of not being at the beach and she LOVES the beach. At first, I said, “maybe with a small rest, I’ll be able for it in the afternoon”, but the small rest left me feeling like I was slipping into a coma. Normally, with her brothers around, one of them would step into the fray. They are older and get that my physical energy wains, and they LOVE physical activity, but without her brothers around, I had to make a second deferral promise, that the next day we would go swimming, but alas, next day, I failed to have the energy too. Finally, I had to bite the bullet and say, “Sorry love, I just can’t take you swimming because I am just not able”.
And that moment of admission to my children, that my heart failure is taking precedence over my mom job, is always the MOST challenging moment of heart failure for me. It’s the moment where the reality that I am a two in one being, a heart failure patient and a mother of three, all wrapped up in one body hits home, and the horrible reality that some days the heart failure bit of me is bigger.
The tears came for us both with my announcement. And then we had the chat, where I explained that I was like Thomas the tank engine for part of the day, but Salty the clapped-out engine at other times, and like Salty in need of being retired to the dockyard, on occasion.
She liked the description and got it. She even gave her brothers the titles of James and Percy (the competitive two… very apt!) and staged herself as a bright new electric engine, which all of us old steam engines struggle to keep up with (true). Our tears turned to laughter and hugs and the afternoon became the stuff of sitting and reading aloud funny books to each other, with lots of shared laugh out loud moments instead.
Living with heart failure and being a mom has its challenges, but I am lucky to have three great kids who can role with it, most of the time. It’s me who struggles to role with it more sometimes. But I am learning that I have to accept my limitations not as failure, but as moments where the kids and I have to do things differently. It might not be ideal, but then I don’t know if any situation is ideal when it comes to parenting or living life. All I can do is my best, and if we can have a few more of those laugh out loud moments along the way, I don’t think we’ll be doing too bad at all.
Le grà
Pauline
© Pauline O’Shea
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Best wishes, Pete.
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