I recently read the following question on a chronic illness facebook page:
“For everyone out there with an other half, how do you keep relationship going even on your worst days?”
Ironically and completely unrelated to this page, someone on twitter with a chronic illness posted recently saying that she was thankful for her full time caregiver, her husband, however that he had decided that he could no longer be her husband as it was too much for him to handle.
That breaks my heart.
I’ve recently seen and read many other comments, thoughts and stories that convey the same basic thoughts. Many people who have been diagnosed with a chronic illness have subsequently lost a significant other.
I don’t know why this is happening and to be honest it is not my business. What is my business is MY relationship.
Here are my thoughts on this whole thing and our relationship:
- No one knows how much time they have on earth. So many inspirational quotes out there include living like it’s your last day and making the most of each day. I completely agree with this. When my husband and I met we were both working full time in law enforcement on rotating shifts. I think working in this field especially helps to teach that it’s the moments that matter and not which specific day, etc. I know that every year everyone gets so angry about Walmart associates having to work on Thanksgiving or Christmas. I lack a bit of compassion because in our world, our ‘holiday’ is whenever we are all together. We frequently celebrate holidays and special moments together when days off and shift work allows and it’s special because we are together, not because it’s the fourth Thursday in November. That’s how it should be. One of my favorite Thanksgivings that we have shared together is shown below. We were both on duty and had a few moments together to have a little date in the ultra romantic break room. But it wasn’t about the food or candles or fancy place setting, it was just about us being together and being thankful for each other. We would have been just as thankful if we had eaten our fancy turkey dinners the Wednesday before or the Friday after.
- I also think law enforcement has really helped to enforce the fact that changes happen. No plans are concrete. I can’t count the number of meals I’ve had prepared and gotten a 4-second phone call with sirens in the background and knew that was my clue that our dinner plans had just changed. It’s important to be able to try new hobbies and roll with the changes of life. We used to really enjoy running together and training in Krav Maga. We can’t do that right now. Now we play cribbage, Egyptian rat screw, and darts (sometimes while seated). He reads me books. We connect in new ways.
- I may only feel well enough to cook or bake one or two things a week. I think it speaks volumes that I use my energy to make sure that I prepare something that is his favorite.
- Growing up my mom used to watch the Waltons. I hated it. HATED it. I can still hear the theme song and it makes me cringe. I’m pretty sure the reason I hated it was because every episode made my mom cry. Since that show I’ve learned that any time a movie is described as ‘heartwarming’ it means that it will make me cry. However there was one part of an episode that always stuck with me. Every child had something going on that required the attention of the parents. In the midst of all that was happening that had significant importance the dad stopped and said that he ‘had to go make a fuss over Jim-Bob’s duck’. No, the dad didn’t care at all about the fact that a duck had hatched out of an egg that Jim-Bob had found. It held no significance to his life, yet to Jim-Bob it was special, held value, and was important. As a father his job is to make sure Jim-Bob knew that he cared about his victories too, just as much as the other kids crashing the truck or getting into college. In a relationship, I think it’s very important to take time to ‘make a fuss over the duck’. My husband loves guns of all different types. Do you know how often he has told me about special significance in history of different types of guns? Do you know why I listen, ask questions and am excited to learn more? Because I care about what he cares about and I want him to know that his interests are important to me. When my husband said he wanted to learn how to use a car battery for acid etching onto an axe, do you realize how invalidated he would have felt if I said anything less than supportive? That’s not my place. I made a fuss over that duck and he made such a cool axe blade! *I did think it was my place to reiterate that we didn’t need a flame thrower, grenade launcher, or a war hammer.*
- Plain and simple. No one likes hanging out with someone who is a Debbie downer all the time and constantly in the ‘woe is me’ place. That’s not fun. I don’t need to lie. I will always be honest when I’m feeling bummed or discouraged or sad. Even if I did lie he would be able to tell anyways. My point here is that I truly need to choose to focus on the blessings and the joys in this world all around us. It’s just more fun. I know that is not the popular thing to say in the chronic illness world, but it’s just the truth. People who laugh are more fun than people who cry. I’m doing my best to laugh more than cry and always thank God for many blessings.
- It’s not all about me. It can’t be like that. It can’t be all about him either. Yes, the majority of the doctor visits in this household are about me, but when he says he has a headache, that needs to be important to me. I need to keep an eye on him and see if something is bugging him or his allergies are making him miserable. Ya, he won’t pass out probably if he doesn’t take his allergy meds, but he’ll be uncomfortable and that is just as important to me. We got to visit urgent care for stitches and x-rays for him a week and a half ago. He went to do something for me and I pointed out that he was broken. He mentioned that even still he’s in better shape than me. Yes, this is true but I care about all of his feelings, aches and pains.
- I’ve got to save up my energy for him to make sure I actively show him that he is my priority. I do my best to plan physical therapy and doctor appointments late enough that I can be there for the snugglin’ before falling asleep time when he gets home from work. I do my very best to save up enough of my strength to make him his lunch each day for him to take to work. I am too sick some days, but I make an honest effort to complete this task. He doesn’t ask for it or expect it, but it’s worthwhile to me.
- On another note, I have to constantly remind myself that my insecurities in my body changes truly are not things that he sees or focuses on. I’ve got to continue to develop and maintain my self confidence because truly he loves me for who I am, not my waist measurement.
- Heart monitors do not get in the way of lingerie. That’s all I am going to say about that.
- Be open and honest about feelings. Don’t be scared to change up your hobbies and try new things. Don’t give up on your romance because parts of your body have given up. It’s not about that and it has never been about that. Romance takes effort and starts from within. It’s about what is on the inside, not the body on the outside.