(This post was presented in ChronicBabe Blog Carnival #2: Love, Illness and Other Confusing Things on April 20, 2010. It was the second edition of the ChronicBabe Blog Carnival, "bringing you a big new batch of awesomely babelicious perspectives on love, sex, relationships and chronic illness...working "hard with co-organizer Fibrochondriac to create a real diversity of writing; in fact, she does a lot of the work, Babes, so we owe her a BIG thank you.")
My mom always told me that marriage isn't easy. You have to work at it--both of you. Of course if you have to work too hard, I'm not sure the marriage is worth it, but sometimes within the marriage there are challenges that take every bit of your strength, determination, and perseverence. If one of you has a chronic disease, you know what I'm talking about. With the chronic disease living inside the marriage, sometimes the marriage itself doesn't get the work it needs because so much time is invested in the disease, that there is little time for anything else.
I'm going to talk about my marriage to my loving husband Jim, how we work through the chronic disease challenges as well as day to day issues that affect every married couple. First of all, just so you know that we have experienced married life for a while with lots of unexpected events, I'll start there, then I'll add the chronic stuff to it and tell you how we handled it as partners. We will be married 10 years on June 10, 2010. We dated for 6 1/2 years and lived together for 2 of those years before getting married. We have lived in St. Louis, MO; Lexington, KY; N. Providence, RI; and Decatur, GA. We have had our two senior dogs for 10 years (Max, 13; Cookie, 10). They have lived in every city with us. We have been trying to adopt a child for 5 years now, since we were living in Kentucky. We currently have no children. We both went to college, having met as undergrads. Jim went on to Graduate School to get his Ph.D. He is now a professor. I got my Bachelor's in Nursing. I worked as a Registered Nurse, and my specialty was a Diabetes Educator. I am now on disability, which is reviewed every 3 years in Georgia.
We met in college, had the same values, beliefs and religion. Our families were both huge and lived in the same part of St. Louis. Everything started out to seem like a storybook romance and life together. For the purpose of my blog, throw out any idea you may have in your mind that life with that special someone is going to be like s storybook romance. It ain't happening! I've said this before in my other blog--"you had me at hello" is only in the movies.
Ask yourself what causes stress in a marriage. Main stressors are finances, kids, work, moving into a new house or a new state/city, losing your job/changing jobs, school, death, and a new baby. There are others, but you get the idea. There is one big stressor that I didn't mention on purpose because for many, it causes so much stress that the other stressors pale in comparison, or the other stressors become even more stressful because of it. That stressor is the big thing that gets in the way within our marriage--that thing is chronic illness.
I can honestly say no matter what seems to be going on at a particular point in our marriage, chronic illness finds a way of forcing its way between us. When we said our vows, we said, "in sickness and in health," but seriously, we never asked for this...
Chronic illness always has to be centerstage. It doesn't care if you've planned a trip for months, decided to accept a promotion with more hours, or if now is the time you and your significant other have decided to start that forever talked about family. There are so many times that I am feeling great (remember it's all relative), and Jim has a huge work dinner or party. It is gonna take every bit of energy that I can find to over-power that chronic illness this time around. No matter how many times it comes between us in our marriage, we are just never prepared enough for it. It is depressing, overwhelming, and just makes me so angry sometimes.
We have always wanted children, but were never able to try because of my chronic illness being in the way all the time. Then, 5 years ago, we began the adoption process because chronic illness had gotten so in the way, that my body cannot even carry a child to term now. My joints are just too damaged. Thanks again, chronic illness for your time. I don't think, unless you actually have a chronic illness, that it is understood how much of a part of the marriage chronic illness is...Let's see, how can I really get this across to you?...
We moved away from our families in 2002. We were the first of both of our families to leave, and we moved to a city where we didn't know anyone. We were so excited, but chronic illness showed its ugly head so strongly then, that you have to wonder if it has a mind of its own...We had no one there to help us. I had 6 surgeries in our time in that city with just my husband, myself, and chronic illness. One of those surgeries was a total hip replacement. I was 29 years old...
I tell people constantly that having a chronic illness in our marriage only made ours stronger. We only had each other to lean on. By leaning on each other, our marriage became so powerful, and we realized we had chronic disease just where we wanted it. We could do it because we loved each other enough to overcome any of the obstacles that chronic disease threw us. I have written in some of my other posts how humorous it was to have Jim help me recover from a hip replacement. He would bathe me, shave my legs, and wash my hair. I have many of my hip replacement antics in my other posts. I figure, if you can't laugh at yourself, what are you gonna do, cry? Well, I didn't feel like crying at that point in my life. We were just beginning this new chapter in our life together, and I wanted it to be a comedy and not a tragedy. I figure there is nothing wrong with that. You realize how much that person you are with really loves you, or doesn't for that matter. I know that Jim loves me, otherwise, he would have left me in Kentucky back when I was 29. I would have been OK though. I had a brand new hip, and I am a positive person. I'm glad we stuck it out together though. We only got stronger, but so did chronic disease, only to keep taking more and more of my joints.
Now I just went through a shoulder replacement. It hasn't even been a month. It's been about 3 weeks since my surgery. I'm doing OK, but I'm not as young as my last surgery, and really not as young as my last joint replacement. I'm 35 now! Wow! I feel like so much has changed, but when people look in from the outside, they may not see it like we do from inside. We still have the same dogs since before we were married, no kids, and we look almost exactly the same as the day we walked down the aisle. But ya know we have changed so much. We are so strong, so much more than we were before chronic disease really gave us a run for our money. Although I didn't actually get a diagnosis until 2002, I had been sick since I was a child. I missed a lot of school, had a horrible immune system, and always had problems staying well. But after we got married and moved away, chronic disease just seemed to try really hard to be the third wheel in our marriage.
This time is a lot tougher on our marriage, I can't lie. We are in an apartment and not a house this time around. I don't like Atlanta as much as I liked Lexington, KY and N. Providence, RI, so I'm not as happy or as content. We seem to be taking on so much. Jim is working all the time. He leaves early and comes home late. I do a lot of the housework and cooking. I take care of the dogs, and they are getting old and need a lot more care. I am involved in volunteer work at a pregnancy center and at the local Arthritis Foundation. My medications are so expensive, and I have to fill them every month, as well as go every 4 weeks to the infusion center for an I.V. We are at the waiting stage for the adoption this time around. We have never gotten this far along. On top of all of that, I'm about 3 weeks out of a shoulder replacement surgery. My right shoulder collapsed the day before Halloween. I woke up that morning, and couldn't move my right arm at all. I knew what had happened. It had happened before to my left hip, but again, we just weren't ready for it to happen at this stage of the game, ya know. So, we had my mother-in-law come before my surgery to help out with cleaning, laundry, dishes, the dogs, etc. before my surgery. Then while I was in the hospital, she got the place all ready for me to come home. I came home to a gorgeous home--clean and organized, and she had let the dogs out every 2 hours besides. She left the day I came home, and then my parents arrived 2 days later to help out.
One thing you need to know is: don't sweat the small stuff. It's so true. I have been so worried about my home being so messy, dishes in the sink, laundry not washed, and things in the wrong place. I don't think anyone else cares about it but me, so why be so worried about it. So I've let it go. Yes, I with OCD, who has to always be in control, etc., has let it all go. I should know better, actually. When you have chronic illness in your life and in your marriage, you are not always in control. Sometimes it runs the show. Sometimes it decides that today you stay in bed, tomorrow you might be able to put some clothes on, etc. That's how it is with chronic disease--so you better be ready to drop everything and cancel at the last minute, and order in instead of cooking, and go one more day in your PJ's because you just can't get around to getting dressed again.
So back to love in our marriage...You know love is there when your significant other is still there pushing through the rough times with you and chronic disease. You know he loves you when he makes sure you feel OK, when he still asks even though he knows you feel like crap. You know he loves you when he asks you all the time if you need anything. With this crazy busy time in our life right now, I still know he loves me...He always comes home to me no matter what...He didn't leave me when he knew I was gonna have another joint replacement, and I know he didn't fancy the recovery period of the first one. I know he loves me because he comes home and finds time to do the laundry when he can, washes the dishes before they cover up the countertop, vaccuums the carpet when the leaves and flowers are brought in on our shoes and on the dogs paws, feeds the dogs twice a day everyday and gives Max his insulin after each meal--he's even getting more patient with the dogs because he knows I want him to be. Let's face it, all you people out there with chronic illness that stay home all the time, we have a lot of work to do without having a job, so when he comes home late every evening and then does my housework, I know it's not easy for him.
Also, with the shoulder replacement, I've been sleeping on the couch since I got home. It is just more comfortable for me because I can sleep sitting up. In bed, I lay too flat...He misses me sleeping next to him in bed. I miss him too. It is lonely when you have slept next to someone for all these years, and suddenly you find yourself alone. Well, the dogs sleep next to me, so I'm not completely alone, but you get my point...
I know he loves me because he does my arm exercises with me. He gets up in the middle of the night to check on me because he thought he heard me walking around. He takes me to all my doctor appointments. He drives slowly over bumps and potholes so that my shoulder doesn't hurt. I just know that he loves me.
Still, everyday we can't help but look chronic disease dead in the face. I have a 5 inch long incision going down my arm from my shoulder replacement. I don't even think about what it will end up looking like when it heals becaue I already have 3 scars on my legs, 4 other scars on my shoulders, and 5 little scars from my gallbladder. I don't even think about the marks that chronic disease has left to remember it by. I wonder if he does though...I wonder if he thinks about my untouched body that he originally fell in love with...Do all these surgery marks take any of that attraction away? It doesn't seem like it to me. It seems like he just loves ME!
It does seem like times are a lot more trying right now for us in our lives. Adding chronic illness to it only makes it that much harder to deal with normal marriage issues and concerns. For instance, it is so much harder to deal with an adoption homestudy when you have a chronic illness. You want so badly to show that you are going to be good parents and that you will have no problems taking care of a child. The truth is, I'm scared to death about having a child. We know that is what we want...That is the way we have always seen it, and we won't feel fulfilled without a family. It won't be a real family without a child or two. I'm just scared that I will be seen as not good enough to be a mother because of chronic illness. We have overcome so much in our lives not in spite of chronic illness but because of chronic illness...I think that says a lot for any kind of relationship. If you love someone enough, you will make it work together. That goes for a marriage, as well as other relationships, including special friends.
Since I mentioned these special friends, I'd like to say that because of these special friends, we have gotten through some difficult patches as well. Since my surgery, I have spent a lot of days home alone while Jim is at work. These wonderful friends, of whom I love, have brought meals and treats and flowers and taken me out of the house and just came to visit and talk with me for hours and hours. Thank God for those that love us!
Again, I stress, we do not overcome so much in our lives in spite of chronic illness but because of chronic illness...I think that says a lot for any kind of relationsip when chronic illness is a part of it!