When life gives you lemons - Congenital Heart Disease, Mental Health challenges & Chronic Pain
We all know the saying, ‘when life gives you lemons, make lemonade’. Well, we’ve had a few lemons thrown at us, and more days than not I don’t really feel like turning them into lemonade. I’d much rather just throw the lemons out and start with something different, like maybe oranges? They are sweeter, versatile, and like lemons, also make a delicious drink at the end. Oh, for more oranges in life!
Most people know one of my ‘lemons’ is the Congenital Heart Disease (CHD) our oldest son was born with. But this past year, we’ve had another health-related lemon land in our court. When I wrote my last post, 3 months ago, I was sitting in a hospital cafeteria, waiting for my husband to come out of his hernia repair surgery. He came out of that surgery fine, but unfortunately it didn’t fix the pain he has been experiencing for 11 months now. In certain aspects of our life, May 2018 to April 2019 has felt like a very long 11 months.
We’re used to dealing with our son’s CHD (well as used to it as you can ever get, I think), but this new issue has been a whole new thing to get our heads around. I didn’t realise how much of a team my husband and I had formed in this past 5 1/2 years of dealing with CHD. And now, for the past 11 months, one half of our team has been down for a fair proportion of the time. It has been incredibly hard. In fact, ‘incredibly hard’ would probably be an understatement. My husband’s pain, now deemed chronic pain, has stretched us in more ways than I ever thought possible. It has stretched us physically and emotionally. It has introduced us to the world of mental health challenges on a first-hand basis. It has meant that I need to take our son to all his planned and non-planned medical appointments, because we’ve realised that the extra stress that comes with hospital visits causes my husband’s pain to flair up badly. It has seen us both reach our wits end, at numerous points. Sometimes those points have been reached after a slow build, where we can feel the stress build bit by bit. Other times, those points have been reached in an incredibly quick amount of time, without warning. The unpredictability has been a challenge of its own.
Having both my husband and son facing tough health issues has been difficult. Really difficult. There have been times when it’s all just felt too hard, with no clear end in sight. It’s been a year when we don’t know what’s connected to what. Is my husband’s pain worse because of a physiological response to the trauma we faced 5 years earlier? I was diagnosed with Fibromyalgia a couple of years after our son was born, at the first point where his heart plateaued instead of declining. It was like by body was saying, ‘right, now that you have a mini-break from cardiology, you can feel the effects of all that trauma you faced.’ Is this now my husband’s body telling him it’s his turn to feel the trauma? We really don’t know.
We’ve only been able to get through this together, with the help of some excellent medical professionals, family, friends, and our faith in God. Living with an eternal perspective reminds me continuously that our time here on earth is short. Verses like Romans 8:18 are a huge encouragement to me, ‘Yet what we suffer now is nothing compared to the glory he will reveal to us later.’ What we’re going through won’t last. Pain and health challenges won’t be here forever.
One of my husband’s biggest fears in all this is that he’s now weak. Yet I truly feel like he’s the opposite, and he has been a powerful example for our kids to learn from. He keeps going despite the pain. He keeps finding out new ways to tackle it. He has seen a psychologist to develop mental strategies, and GPs and numerous specialists for physical strategies. His strength, polar opposite to weakness, is inspiring to watch and is reflective of his innate determination. He has been a living and breathing example of Romans 5:3-4: ‘We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation.’ This doesn’t mean that it’s easy. It doesn’t mean that there aren’t lots of very hard and dark days. But his health challenges have helped him development endurance, which has led to strengthening his character. The Bible continues to speak into our everyday lives, making our faith real and tangible.
The past 11 months have taught me things I may have never have learned if it hadn’t been for these lemons:
That my husband and I are in this together. We’re stronger than ever after this past 11 months, and it’s going to take a lot more than these health issues to break our team up.
That having half of our team down physically and emotionally has been harder than the first 12 months of our son’s life. And that’s saying something. My husband and I both agree that this past year has been harder than going through two Open Heart Surgeries with our baby boy, the diagnosis, and all the stress that came in that year.
Both physical and mental health challenges are hard, in totally different ways. We’ve been acutely aware of the hidden burden of disease since having CHD in the family (the unseen impact of disease), yet this past year has opened our eyes to the world of mental health challenges, which are also very commonly hidden.
When we share parts of our story, lots of people share their stories with us. Try it yourself. Start sharing your story and you suddenly won’t feel so alone. Lots of people will be able to relate, and while their story will most likely be different to yours, there is so much you will be able to learn from each other. I am so thankful for the people who read my husband’s Facebook posts and checked in with him, and also for the couple of people who checked in with me. Sharing builds community, and while I personally find vulnerability very difficult and confronting, it does actually help break walls down.
Having your own friends, aka support network when you need it, is so important. Pick your people who you trust and are a good influence on you, and share with them so you’re not isolating yourself.
Looking after yourself is essential, not optional. I find this one really hard, but it is a lesson I’ve learnt this past year. As they say, put the face mask on yourself before someone else. I can’t give my family my best if I’m continually worn out, overwhelmed and stressed. If you only have 1 minute, do some deep breathing with your eyes closed. If you have 5 minutes sit outside and look at the sky. If you have 15 minutes, go for a walk or grab a coffee. You will feel so much better afterwards. Micro breaks are sometimes all we can fit in, but in my experience they make a difference. Focus on what you can fit in, not what you can’t.
My faith is incredibly important to me. It helps me keep things in perspective, and gives me something unchanging to rely on. Going to church like a re-set for me each week. It can be so hard to get there, but once I’m there it’s always worth it. It also gives our family an eternal focus and purpose that is beyond ourselves.
When it comes down to it, would I still pick the oranges over the lemons? Heck yeah, without a doubt. But the lessons that come from lemons are pretty amazing.