We all know how difficult it is to get through those days when we are feeling the pain and exhaustion of a flare. The chronic pain and persistent flu-like symptoms do not only affect us. They affect everyone around us, especially those we love, and those who love us.
I am not a marriage or family counselor. I do not have any degrees or certificates in this area. I am a woman with RA who has been married to the same man for 34 years. We have had our ups and downs, but we have always loved each other, and we have found ways to navigate this crazy life with RA.
Let’s face it. It is tough to be in pain all the time. It is also tough to watch those we love live in pain. RA patients need to acknowledge the pain their loved ones are experiencing. That would be the pain of watching someone you love have really bad days, and feeling powerless to ease their suffering.
My husband is not a doctor. He cannot help me in that way. He can read about RA and increase his understanding of the disease. The more he learns, the more comfortable he is discussing the medication options with me. I value his opinion, and I ask it often. This simple exchange of knowledge and ideas empowers him to help me in a very special way. We grow closer as we focus our attention on ways to increase our quality of life. It really isn’t just my RA anymore. It is our RA.
Just as important to us are the times we spend not talking about RA. We do not let RA dominate every waking moment. We talk about ideas, we talk about photography, we talk about our church activities. We watch movies together in the comfort of our own home. We bought a big screen TV and we frequently enjoy taking a two-hour break from the world, its problems, and our RA. I often put some movie butter popcorn in the microwave, and nothing else matters…for a while.
My husband has a couple of hobbies, and I encourage him to pursue them. His work does not afford him much leisure time. When he does have some time for himself, I encourage him to see his ham radio friends, or start one of his woodworking projects. He needs these activities. They give him a break from the everyday stresses of his life, and "our RA".
I try not to monopolize all of my husband’s time and attention. That would not be a healthy thing to do. Not for him, and certainly not for me.
What I find especially endearing about my husband is his willingness to help me find ways of adapting tools or methods of doing things so that I can still accomplish every day activities that most people take for granted. It is important for us to set goals, and to find ways to accomplish those goals. A little creative ingenuity can often make this happen.
I love to fish, but I cannot walk to the lake anymore. There is a BIG hill there that is tough on healthy knees, let alone RA knees My husband bought an Arctic Cat utility vehicle for us last summer. I use it to go out to my raised bed garden, to go fishing, and to run around our little acreage in the county. Besides being useful, it is fun to ride around the pasture with my husband, the wind blowing in our faces at a speed that is probably a little too fast! We all need to have a little fun.
Communication in marriage is essential. It is especially important when chronic illness causes financial and emotional stress. The silent treatment is not going to accomplish anything, but perhaps cause alienation.
If there is something stressful that needs to be discussed, find a time when neither you nor your husband is emotional about the issue and approach the problem as a team looking for a solution. Stay calm and be practical. Remember, you are in this together.
It is also important to not be so wrapped up in your own illness that you do not notice when your spouse is not feeling well. I know when my husband is a bit short-tempered or impatient, he is sick or overly tired. When this happens, I try to be especially empathetic and give him a glass of water and some medicine, or whatever he needs. Sometimes I send him off to bed with the Kindle and orders to rest.
I sometimes worry about the extra physical work my spouse has taken on since my illness. On my good days, I do as much of my "share" as I can. I enjoy working outside, and I enjoy helping my husband with his projects. It gives me a sense of accomplishment, and I never want him to feel as though I am taking advantage of him, or taking him for granted.
I have spent the last several months researching healthy foods and easy recipes. I have come up with a few simple recipes of my own. I like to cook, but I can’t stand up for hours anymore. Fortunately, I have found it is possible to cook good, healthy dishes without spending tons of time in the kitchen.
Summer is wonderful because there are so many fresh vegetables available. Sometimes I saute yellow squash, zucchini, sweet onion and a small tomato together in olive oil until the vegetables are crisp tender. I season the vegetables with Greek seasoning. I top the dish off with slivered almonds, and we have a very healthy, easy-to-prepare side dish. This works wonderfully well with fresh or frozen green beans, also.
My husband and I cook together when I am having a "not-so-good" day, and sometimes even when I am having a great day. He is becoming a bit of a chef. Cooking healthy meals for my husband is one way I can show my love and appreciation for his love and support. I know not everyone likes to cook, and I am not suggesting this as a mode of action for anyone else. I am just sharing what works for us in our marriage.
RA is a tough disease. Tough on the body and tough on our relationships. If we and our spouses can find ways to work together, to share common goals, foster mutual respect, and become best friends, we have a chance to fight back with the power of two. That is truly a blessing that I have in my life. I do not have to battle RA alone. I hope you can find ways to include your loved ones in a positive way in your fight against RA. If you can do that, you may find joy where once you saw only sadness.