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.
Living.
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.
Smooch
This beautiful. You have a gem of a family, Erin. Thank you for sharing this.
Thanks for being what a husband is supposed to be…no more…no less…and everything to your family. They’re lucky to have you. WORD.
Love.
I applaud your courage and admire the strength of your family’s love. Living with a chronic illness is daily, and challenging in ways hard to understand if you don’t live with one. Thank you for sharing your story. It can give hope to so many others.
You are so fortunate to have a true partner, for better or for worse, in sickness and in health. As is he. XO Melanie
Love it. You are blessed, even in the midst of all the sick, because you have an amazing husband and kiddos. My own illness is nothing in light of yours, but I sometimes take for granted my own support system. Thank you for reminding me of what I have.
I am glad you wrote this. I was a caregiving spouse a long time ago. It is not as easy to honor the “in sickness” part of the vow as people like to think it is. Of course people don’t ever really stop to think that chronic or terminal illness could very well be part of their future when they take those vows.
When serious illness strikes, it is the patient who receives all of the attention, and understandably so, but caregiving spouses need tlc too. Aaron is a very lucky man to have a wife like you.
I know the ups and downs of steroids & of chronic disease, thank you for writing about it. It’s important. I love that you write about how you are supported, I too am fortunate & grateful for that. They say glibly it will either make or break your relationship, but I think it is much more complicated than that. You are so right that it changes everything. One of the things chronic illness brings is that it makes you go deep in your relationship with yourself & with those around you. I believe this is the journey. Best to you.
lump in my throat…I’m so glad you have each other.
Like you, I’m one of the lucky ones with a supportive partner. He’s been there through thick and thin. Fought for me when I didn’t have the strength to fight and sat on my hospital bed and just held me through the tough times. And still after 20 yrs together and nearly 6 yrs of me being sick he jokes and looks at me like I’m still the girl he fell in love with. That’s not to say it hasn’t been tough, or that there haven’t been tears and fights thanks to the stress, but he’s still here and he still grabs my meds and brings me coffee in bed, or downloads my favourite movies and TV shows for me to watch in hospital. I wish everyone with a chronic illness had that level of support.
Erin,
I have been meaning to reach out to you again. I know it has been a while. This post is BEAUTIFUL, touching, real, amazing. I am SO glad you have Aaron. I am so amazed by his love and sweetness. I know exactly what you mean when someone says they can handle things from the beginning, but it takes a real strong warrior to keep at it with love and perseverance. Even my parents lost patience with me early and it’s been hard to be without a constant emotional support throughout my battle with Lyme. I am so happy to hear your words of warmth come through even in suffering. I understand that feeling of happiness that can simultaneously be felt through pain. You deserve Aaron, and I am so happy you have him.
“I love that you say: I wish you all such a partner as you wage your war, because I know I am one of the lucky ones.”
I have found an Aaron, mine is a Scott. I found him 8 months ago and we live together now and have been living with him through a very rough treatment for 3 months. He is such an amazing support, just like you describe Aaron. I will send you a private email as well, but just want to tell you how beautiful it is to hear these words, what an eloquent way you have of expressing what you have said. And all the best energy and prayers to you as you continue battling what will only make you a stronger person. And I know you will come out of the tunnel, just like I am. Much love, Mona
You’ve got a good one. One of the best.
And the showing the world your ass through the hospital gown made me laugh out loud because I am certain it is 100% true and I can see it happening.
I love you both.