When everything falls apart but you have to keep it together
Last year started in an epic way. We sold our house, went travelling with our toddler through France and Italy for a few months and then moved into a gorgeous new home. We felt unstoppable.
Then everything crashed in a spectacular fashion.
We knew my husband, Tim’s kidneys were slowly failing, but we weren’t prepared for it to happen so quickly. Life had already changed as his illness progressed, but on the whole we could carry on in our bubble of family, ambition and relative normality.
As soon as we got back from our time away everything became very urgent and our incredible family and friends rallied as we tried to find a match for a transplant that would take place later in the year.
He was extraordinarily lucky to get a new kidney in August last year and although since then he has experienced what seems like no-end of complications, he’s finally beginning to get that mischievous little glint back in his eyes. How I have missed it….
Tim is a bonafide superhero. Literally. A real-life superhuman.
He’s kept going through this debilitating and scary time with the kind of courage and dignity you only see in films. We work for ourselves, so he had no option but to get back to work within two weeks of the op when most people would have been off for months recovering. I will never understand how he did it.
We like to think of ourselves as pretty positive and life-loving people, but this thing has knocked us sideways.
Our lives are forever altered now (there are life-long effects of immunosuppression and the possibility of another transplant in the future) but we’re trying damn hard to remember the people we were before kidney-gate.
We’re trying to piece everything back together and literally LIVE every moment.
We’re trying to honour his amazing donor and their family in the best ways we can and encourage more people to consider organ donation.
We’re trying to make this time count for something and create a brilliant future.
Our little boy lit up this dark time. He wanted us to have fun, laugh and be idiots when we felt like crying. It sounds mega-cheesy, but he gave us strength when we felt weak.
One of the most difficult things I have ever experienced is having to keep my shit together while everything was falling apart.
Things couldn’t just grind to a halt while we dealt with the fallout.
It felt lonely as I tried to stay strong and protect my other half from worrying about me when he had so much else going on.
After a few back-from-the-brink-of-madness episodes, I found that accepting a few things made a huge difference.
1. Having a significant person in your life become unwell is a rollercoaster. (And I am not a rollercoaster kinda girl.) A cliché maybe, but there are going to be good days and bad days and you have no idea what’s coming next. You can’t control that, and that sucks.
But you can control how you deal with the setbacks. Take back any control you can. Renegotiate your relationship and make manageable plans.
We sneaked in a cheeky date-night dinner on our way home from a 12-hour hospital stint once (ok…it was only an hour. We were both pooped, but it made the day so much better).
2. Laughter is GOOD. Let go of feeling guilty about laughing. Have more fun. Dance to music that instantly makes you feel good. Enjoy a few moments of light relief. Forget the black cloud. It makes the worrying times so much easier.
One day while we were waiting for some results I taught our little one the entire alphabet in two hours. It’s going on my CV as one of my biggest achievements.
3. Life has taken on a new shape and there’s a new normal now. Eventually, with dogged determination and sheer bloody-minded defiance, you will feel able to forgive the universe and feel happy with that new normal.
4. People are amazing. They want to help. When you’re fiercely independent, accepting help is tough. But those people held our heads just enough above the water so we could take the odd breath. It’s not always the people you’d expect it would be, either.
Adjust your expectations, reassess your priorities and reach out to them. Let them bring you meals, clean or take the kids. And talk, talk, talk to them. Especially when it’s the hardest thing to do.
5. You’ll burn out unless your wellbeing is a priority too. Slightly obvious, maybe…but I overlooked this one a bit too much. It’s natural for parents to push themselves to the bottom of the pile but you can’t keep it up.
Give yourself permission to feel everything; the despair, grief, fear, pain, anger and everything else. Allow it all to come, because it will pass and give way to something else. If it’s suppressed, it’ll resurface. Be kind to yourself by being proactive about helping yourself.
6. Natural therapies work wonders. Researching approaches that may help is therapeutic itself and makes you feel infinitely less powerless.
Look into alternative therapies, supplements and private treatment options that can complement what the doctors can do with medicine. There’s ALWAYS something that can be done. It may not provide a cure, but it might help alleviate symptoms or support the body in other useful ways.
This time has taught me a lot.
I’ve learned that lots of people in my life would go through agonising surgery for someone they love. I’ve learned that being truly, brutally honest feels like it will be much harder than it actually is. I’ve learned that I’m made of pretty strong stuff.
I’ve learned that the NHS makes miracles happen every single day. I’ve learned that the world is full of compassion, even though we’re led to believe the opposite. I’ve learned that the human mind is beyond extraordinary and that if you want something enough, you’ll do it no matter what might try and stop you.
Having someone you love become ill must be one of the hardest things we can endure. Factor in having to raise small children while the nuclear bomb is going off, and things go up a notch.
You’ve got no choice but to get through. We’ve said we’ll probably look back and wonder how we survived. But we’ll carry on trying to make it count, and looking at everything this has taught us so far, I think we might just be on the right track.