My husband frequently says that he has SRA (sympathy Rheumatoid Arthritis) every time his joints hurt. While he tries to understand what I am feeling, he truly cannot comprehend it and, if truth is known, I don’t tell him every single time I hurt or don’t feel well. I would sound like a broken record (oops, that just age dated me, didn’t it?) He will frequently tell me that he understands, but it is clear that he doesn’t. He expects me to do the things that I have always done and he is surprised when I am unable to do so. I can almost see him reminding himself that I need to be treated differently but I am always telling him to stop treating me different. Talk about mixed messages.
From the perspective of someone suffering from RA, here are ways that you can help your loved ones with RA.
It is so important to understand that we may not be able to do the things that we could do prior to the RA diagnosis. Whether it is lack of energy, fatigue or pain that prevents us from doing things, we are, at times, just not able to do them. It is not because we do not want to, but rather, we can’t. Since my RA impacts me differently daily, I send confusing messages to my husband and friends regarding what I can and cannot do. One day, I have difficulties walking up a flight of stairs because my knees hurt. The next day, I do not feel like going out because I am exhausted. The next day I don’t feel like cooking because my hands hurt. My husband has come to understand that when he comes home and we have take-out food it is because something is wrong. Does it really matter what joint was hurting or whether or not I am too exhausted to cook? Not really. He just knows that I don’t feel like cooking and he respects that.
Patience goes both ways. I frequently become impatient with my staff because they create drama and stress on issues that I perceive to be unimportant. I minimize their issues because they seem so minor when compared to dealing with RA. I have to remind myself that they are just being themselves and that their issues are important to them at the time. Patience is hard when you are tired or in pain but you have to remind yourself that patience must be exercised by both parties.
Prior to being diagnosed with RA, I was experiencing weird and random (so I thought) joint paint. It came to a head when I woke up in the middle of the night with the most intense pain I have ever felt in my shoulder. My shoulder felt as if I had a 200 pound weight on it while someone was holding my shoulder to a fire. I felt nauseous from the pain. No matter what I did, the pain continued. This lasted throughout the night and into the morning. I was on the verge of asking to be taken to the ER when the pain slowly started to slip away. When I was first diagnosed with RA, my husband had no understanding of the disease. He did not understand why I felt tired. He did not understand the level of pain I was feeling in my joints. I encouraged him to do his own independent research on the disease so that he would have a better understanding of it from the perspective of others. I also encouraged him to ask questions after he did his research so he would understand how the disease was impacting me. I can always tell when he has done more research because of the questions he asks me.
For me, I need my space when I do not feel well. I need to be left alone and to remove myself from stress which is easier said than done. If I am at work, I will go to lunch by myself and find a quiet corner of the restaurant where I can read a book and eat my lunch in peace. I may also close my office door, put my feet up on my desk and close my eyes for 10 minutes or so. Sometimes, I walk and other times I go out at lunch and go shopping (browsing). At home, I will find a quiet place to sit. Sometimes, I will lie on the couch and my husband knows to give me a wide berth. I guess what I am saying is that if you need space, time to be alone, find a way to do so. Managing you stress successfully will help with your RA flare-ups. Communicating with your RA loved one is a key to helping them. Find out if they need their space and giving them their space is important. From that old Kenny Roger’s song, “Know when to hold them, and know when to fold them” is important. Knowing when to give them their space or to give them a hug is important. Have a place where it is understood that the person needs their space. For me, the couch is the safe place at home. I don’t normally sleep on the couch so if I am there, it is because I don’t feel well. My husband will come in and check on me and ask me if I want company or if I want to be left alone.
My husband has a fantastic sense of humor. He helps me to find laughter every day which puts my mind in a calmer and happier place when dealing with pain and fatigue. We have a chocolate lab and German shepherd that we adore that make us laugh and smile. Find humor in your life. Watch a funny movie. Read a funny book. Associate with people who have a sense of humor. Find laughter in your day. Help the person in your life with RA to find his or her smile again.
Become part of the person’s support team. If they are on a restricted diet, join them. Embrace the diet and participate in their diet choices. If they need to exercise, join them. If they need encouragement, become their cheerleaders. My husband hates gyms. He joined a gym with me to support me. He now loves to go work out and it has helped improve his health and I enjoy his company.
Communication goes both ways. It is important for the person with RA to talk about how they are feeling and what is going on with them. It is also important for the support person to ask questions. I often forget that my husband wants to protect me and often feels helpless when he cannot “fix” my health. He at times becomes frustrated that I am sick. He is scared of losing me and of my pain. I still need to learn to talk about how I am feeling and he needs to know that there are some things that he simply cannot fix. Being honest is a start. I often tell him “I feel great” when I don’t. I get tired of saying “I’m hurting or tired.” And last, don’t make assumptions. Don’t assume that your partner knows how you are feeling. Tell them. It is also important to know that just because a person with RA may not look sick, they may still be in pain.
DON’T ASK-JUST DO IT:
This might be a slippery slope depending on the personality of the RA sufferer. I am extremely independent and having someone step in and take over may not always be received well by me. However, if I am having a particularly hard day, my husband is really good about taking over without asking if I need help. I came home the other day and found that he had gotten off work early and surprised me with a clean kitchen. He said that he knew that I was suffering (because I had communicated this to him) so he wanted to help out. Those little things in life make a big difference when you don’t feel well. I recently took a beginning sailing class. By day three, I was beat, tired and ready to sleep for a week. I was having difficulties starting the engine. A younger student asked if they could help. Five years ago, I would have resented the offer. I smiled, stepped aside and let them struggle with the engine. It was hard to stand there and watch but I was able to recognize that I could not do it.
HEATING PADS AND HOT TUBS:
My husband and I bought a “plug and play” hot tub a couple of years ago. It is called that because it plugs into a 110 not 220 electrical outlet. It is a two person hot tub that is triangular shaped so it can fit into a smaller space. The cost was about $3,500.00. If you get your doctor to write a letter or “prescription” for the hot tub, it might be tax deductible. You should check with the IRS and/or an accountant before buying it. I realize that this is an expense that a lot of people cannot afford. Two years ago, this would not have been something that we could afford. We had set aside some money for that rainy day and decided to use it on this purchase. Just sitting in it at night, after a long day at work, helps me to relax. I don’t know that it helps with the joint pain. Most of the time, cold helps. However, the hot tub helps my muscles to relax.
Lifesmart Rock Solid Simplicity Plug and Play 4 Person Hot Tub Spa With 13 Jets
Heating pads are a great alternative. They come in so many different shapes and sizes and most can be heated in a microwave. Most of the time heat helps. However, there are times that I want an ice pack. I have both on hand, just in case. If someone is suffering, ask them if they want hot and cold and offer to get it for them. It is truly those little, thoughtful gestures that make the pain a little bit more tolerable. Check back in a couple of weeks because I hope to make some heating pads which will be sold under the “stuff to buy” tab. Proceeds will be used to pay to offset the cost of the site.