For so many of us, getting out of bed is a struggle. Fighting thru pain, physical complications and emotional stress round the clock takes its toll on us for sure but what about the toll it takes on our spouses?
One of the biggest lessons I have learned in recent years, thru near death complications from vascular EDS, is that whatever is happening, is not just happening to me. It is happening to US. We are so quick to shut down and turn inward with our “what if” thoughts and thinking no one has any idea what we are going through but this is the farthest thing from the truth!
When I was obsessing over the potential “what if” outcomes of my brain surgery I had thought I was alone, but one night my husband told me that he had a knot in his stomach and was playing the same “what if” game in his head. He admitted that he even “lost it” on a job site once! (My husband is a 100 percent Italian construction worker guys guy, he NEVER sheds a tear!) He didn’t try to fill my head with the fake positives Of “you’ll be fine” etc… (I can’t STAND that! If the doctors don’t know, there is no way for you to, so PLEASE don’t lie to me because it pisses me off. It doesn’t make me feel better!) Instead, he got all my fried favorites and all my junk food loves and we just talked about the “what if’s” together BUT for every negative one we had to come up with a positive one. It is unhealthy to wonder “what if I don’t make it?” and NOT balance it with a “What if I do make it?” The positives were great! One was that we will rescue another dog…we did! Another was that my five-year anniversary of that brain surgery I would get wrist tattoos of ywo words that not only describe me but inspire me…I just got those this past year! My left wrist reads “RELENTLESS” and my right wrist reads “STRENGTH.. It was important to set up positive “what if’s” that are down the road as well as immediately. Doing this was a great way for us to speak our truths about our fears and also to set goals of fun things to look forward to. It made our bond stronger if that is at all possible.
I tend to feel guilty that my husband is stuck with someone who is “broken.” I can’t do all the things that other people my age can. I no longer work so I don’t financially contribute to the home. I am moody and irritable. I eat a lot of meds and something on me is CONSTANTLY in pain, subluxed or dislocated. I sometimes can’t even stand to be around me so I don’t know how he can but he always says, “I married the person you are on the INSIDE. I don’t care what falls apart on the outside. I’m in construction, I’m a carpenter I will figure out how to nail you back together!” I appreciate his humor but feel bad that after working so hard he then comes home and cooks, cleans, does laundry, cares for the dogs etc. I am very blessed to have him in my life and I try to not take advantage of how good he is to me, if I am having a good day I clean full blast, or do whatever I can to contribute.
At the end of the day it is our conversations that mean the most to both of us, we talk for hours about EVERYTHING, we make each other laugh, we laugh at each other, and it doesn’t matter that I am no longer the hot, skinny, pretty, put together girl on the outside, I am still the caring, loving, funny, sarcastic and kinda bitchy girl on the inside that he fell in love with all those years ago!
My husband is AMAZING. He does everything he can to make my life easier and my discomfort more comfortable. When friends come to visit and sees him do things like cook, clean and jump up when he hears the ice hit my glass signaling I need my drink refilled, they make comments like “Matt is like your slave” but he answers them by saying “I do it cuz I love her”. In an in depth conversation he revealed that if he couldn’t find a way to make my pain go away and my joints stay in place then the least he could do is try to prevent it from happening as much as possible. This is HIS contribution to helping me through my illness. He hates to be helpless, he hates to see me cry or doubled over in silence holding my breath because even shallow breaths hurt. He hates when the RSD kicks in and my skin is so hypersensitive I can’t wear clothes let alone withstand his touch. He would love to rub my back in supportive comfort but he cant. He just wants to help. Do I sometimes want to do it myself? Scream that he is hovering? Feel guilty that he does so much and I do so little? You betcha! But then I remember that this is for him too, he needs to feel like he is helping so he doesn’t feel so helpless.
So the next time we want to curl up and be left alone with our pain, or before we are so quick to snap and assert our independence despite our pain, maybe we should all just take a deep breath and wonder how our spouse is feeling, consider their feelings and then calmly react in a more positive way. I know, easier said then done, but I would much rather my husband feel helpful then helpless.
My question for this entry is “What is the most helpful thing your spouse does for you/your condition? What is the least helpful? Also, have you sat down with your spouse and discussed how they feel about how you being sick affects them?”
I wish you all pain free days and good health!
Peace & Paw Prints!
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.