The Rules

The hubs and I don’t fight often, but we do have our moments. When we were a young relationship we argued about where to go on date night, or why we didn’t always care for each other’s friends. As we grew in our relationship we fought about things like who would take the night off to watch the kids or why coming home at 5:00 am was no longer appropriate. Often times during these arguments my husband would say to me “what are the rules? Write them down so I don’t forget them.” It used to make me so insanely angry when he would say that to me. But then I realized maybe that is exactly what he needed.

See, the issue isn’t that my husband is an insensitive jerk, it’s that he is not a mind reader and I am a stubborn woman who hates asking for help. In a perfect world he would anticipate my every need before I even spoke it, and for a long time I foolishly waited for him to figure it out. Pick up on the clues, read between the lines, just know  me so well he knew what I needed. This would prevent me from having to ask for help and risk being denied and it left him completely in the dark until I had a melt down about why he didn’t help me more.  So, after much consideration on my part I did exactly what he had been -albeit sarcastically- asking me to do.

I wrote the rules.

I spent a week with my pain self and really thought about what I would need from him to truly help me along in this journey. What can he do for me on a daily basis that makes me feel less alone in all of this? How can I make him understand what I need from him without having to constantly try to ask for it. I spent a week writing, deleting and writing some more and came up with a list of things I need from him to help me to help us live with this chronic pain.

It’s only been just a few days since I gave it to him and at first I was so nervous to be so vulnerable, so dependent on him in such a black and white way. I was afraid he would find me needy and feel overwhelmed by my requests, maybe he did, but I haven’t seen it. The changes I have seen in the last few days have been incredible. I’m not saying its perfect, or that we will ever be, but I am saying that this is something that desperately needed to happen in our marriage and we will keep working from here.


 

“The Rules”

Know my limits. This may sound like a tough one because only I am in my body, but I am sure you’ve picked up on a few of my “tells” by now and these are good indicators that it’s time for me to be done for a while.  If you are unsure of what my limits are; ask me. If you notice I’ve been cooking or cleaning for a half an hour or so offer to take over, so that I can take a break before my pain spikes out of control.  When making plans for us with other people, or just us alone, keep these limits in mind so that I feel less pressured to push passed my pain limits to keep up with you. This may look like planning ahead to park close to the door at an event, or making sure there is a place for me to be comfortable when we go out.

 

Offer to help. Take on daily tasks so that I can use my pain free time for me things like yoga, a run on the elliptical or lunch with a friend. Often times I spend so much of my good time doing things for the family and around the house that I am out of time to do the things that are good for me.  Since I am the wife and the mom I feel like it is my responsibility to put my family first, so I need my family to put me first at times as well. Try not to make me ask twice for help with something. I know this sounds like a parent thing to say, but hear me out. If I ask you to take the garbage out and it sits I feel like a nag asking again so I do it myself.

 

Offer support every time I mention my pain. If I say to you “I am at an 8 right now.” I’m not just saying it to say it. I need you. Stop what you’re doing for just a moment to hug me or rub my back. It doesn’t have to last forever, but a 5 minute break from what you’re doing gives me a 5 minute break from my pain. If I’ve told you that I am at a high level of pain take the lead with the family and things that need to be done.  Make it easier for me to go to bed and take care of myself instead of having to ask for help with each individual thing.  Likewise, if I’m having a good moment and comment on it, be my cheer leader and get excited with me! Knowing that you are there with me helps me feel less lonely in the rollercoaster of constantly changing pain levels.

 

Be supportive of my treatments, and ask about them. If Physical Therapy is something I am working on ask me how it’s going. If I accomplish an exercise that is difficult take a moment and congratulate me. This is huge news in my world! Recognize how hard I have been working to better my condition and let me know you’re invested too. If I’m trying a new medication therapy ask me how it’s going and please ask often. Sometimes the side effects change from day to day and having someone to talk to about it makes it easier to deal with. It’s always a big warm fuzzy when someone asks me about my condition and treatments instead of being the one to bring it up myself.

 

Validate. Validate. Validate. I realize that it’s hard to understand pain when you don’t experience it at all times of day, but that doesn’t mean it isn’t there. A comment here and there about how you appreciate everything I do-despite my pain- helps me know that you know the battle I fight every single day. It also takes away some of the guilt when I feel too ishy to cook dinner or do the laundry. In this vein, asking me how I’m doing at different times during the day is another way to validate my pain. This lets me know that I am not the only person who worries about it all day long, and helps me know that you care, and want to know how I am doing. Again, being asked about my pain instead of me having to bring it up gives warm fuzzies all over.

 

Get to know my condition a bit more intimately. This thing isn’t leaving anytime soon and it’s lonely to be the only one who knows anything about it. Make an effort to learn the medical terminology associated with my condition as well as the exact name of my particular condition.  For extra points educate yourself about the procedures I have had and the therapies I’ve tried. I know this seems overwhelming-it is. But knowing that you have an interest in what I am dealing with on a daily basis makes me feel less alone. The more you understand what my condition(s) is and how it affects me on a daily basis, the easier it will be for you to know my limits and plan things with them in mind.

Adjust. Everything in my life changed the day I realized this pain was not leaving without a good fight.  Since then I have made adjustments to every area of my life: my hobbies, my work, my friends as well as my diet and how I care for myself. It’s understandable to feel like since you are not physically affected by my condition that your lifestyle should remain fairly unchanged. The problem with this idea is that while my journey is changing course yours is staying the same. Partners are supposed to be in it together, no matter what the road brings. If I’m drudging through the mud I need you right there next to me, not taking the detour on the curb. If my hobbies have become reading and watching movies while yours remain mountain climbing and skiing there is less and less common ground for us to stand on.  Also, let me know, that this is still where you want to be; surgery, physical therapy, pain flares, sweatpants, tears and all.

 

Do these things every day. Every. Single. Day. My pain never takes a moment off which means that neither can I. In turn, this means that you shouldn’t either. Always make yourself available to me and what I may need from you. Be present. You don’t always have to do it with a smile on your face, trust me, I get this isn’t fun. If you do feel upset or frustrated about something say so, but remember that it’s my pain and not me that has changed things for us.


 

While I was writing this I got to thinking about what it must be like to be the spouse of someone with a chronic illness, and what challenges they might face. Judgement from friends or family when they become less available, the stress of taking on more of the family workload, financial stressors as well as simply having to see your partner hurting. If you were to ask your partner/spouse for one thing that would help you live with your illness what would it be? If you could tell your spouse one thing that they do for you that makes this just that much easier what would it be?

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