It is, again, the wee hours of the morning and my mind and medication have me awake.
Since I have the ear of so many of you who suffer from a chronic illness, I felt it time we talk about that thing no one ever wants to talk about when it comes to chronic illness: living daily as someone you love suffers.
It’s all very taboo to talk about this, although I’m not sure why. Probably because it’s so intimate. Because it’s so personal. But let there be no mistake: chronic illness will change everything.
But just like everything else, it’s how you handle that change that makes all the difference in the world.
(photo by Megan Hook Photography)
I am thankful my partner is my best friend and I can talk to him about what ails me and what sustains me. He still rolls his eyes in all the right places and doesn’t hold back when I need to be kept in check. Something a good partner will continue to do when you are laying in a hospital bed, your own bed, or just at home bitching and moaning about taking your pills and injections. You don’t get off the hook because you are sick, in fact, you might get that eye roll a tiny bit more often because he knows damn well you know better than to be pulling whatever crap you are trying to pull as staying healthy is what is most important.
I am thankful he is patient and kind, even when my steroids make me otherwise. ( I type that with one hand as I open a pill bottle with another, knowing that I need to keep this mood in check before the rest of the family wakes up and comes downstairs. This way they don’t find me in a puddle of tears and tissues OR scowling and banging hard on the keys of this poor, beat up laptop…weary from having words shoved in and out of it as my emotions tug and push and pull. )
But I am forever in love with this man who has put myself and his family first as we battle this long-term war together. Having him has made all the difference.
As the tears fall on my keyboard I am letting go of my worry about the future, about our time together, about just how many more test results or lab work ups or doctor sit-downs we can take.
I have no fear.
He is by my side through better and worse and that makes all the difference. I will never have to do this alone, and I will never have to face this without holding his hand. Or hearing his laugh. Or giggling as I lay with an IV in my arm while he sweet talks the nurses into bringing me my drugs early.
Don’t let your disease or disorder fool you. It WILL try you and your relationship in ways you never envisioned when you heard that first diagnosis and muttered ‘pfft, we can do this.’ Time ticks slowly as you wage war, and wears you down. What I wouldn’t give to have the last 18 months back to be lived as a healthy person, just as thankful for those by her side. Or to know then what I know now, so I could prepare.
But when those dark days come, know they are only temporary…even if temporary means months. Know that they will pass…even if passing could means years. Know you will come out the other side stronger, smarter, and with a much bigger appreciation for the person who was your primary caregiver, your cheerleader, your biggest fan, and your biggest worrier and warrior.
I wish you all such a partner as you wage your war, because I know I am one of the lucky ones. And if I can find room somewhere between our son and our daughter in our big ‘ol bed, I’m off to lay my head on his chest and soothe the fight in my body for just a bit longer with his heartbeat. Only he has that power…because I gave it to him long ago and not once has he wavered, and not once have I dreamed of taking it away.
Ok, maybe only a few times when he insisted he push me a bit too fast in the wheelchair just to see if we could go downhill at TOP SPEED or his repeated attempts to show my ass to the world out the back of my hospital gown.
I love you, Aaron.
If it’s any consolation they should drop my steroids back down next week and if you are lucky I might not be so marshmallowy. But don’t get your hopes up.