My body has a window of time that it feels its best each day. Between about noon and five o’clock I am at whatever best I am going to be for the day. This is also the time frame when I see all of my friends, which is good. I would rather sit and talk during my good time than during my worst. Every week when I see a friend of mine she says, “You look so good.” I 100% believe she is telling me the truth and want to believe that I look good even though I may be sitting and laughing while feeling like crap. What I don’t think my friend really understands is that my window of time looking and feeling good together is very limited.
My mornings are always rough (the only exception to this was recently when I was on prednisone only. It was glorious to wake up and jump out of bed. Since starting the Arava, the prednisone is not working at all.) Yesterday morning my shoulders and hands hurt so bad that it took both hands to lift my tea cup. I went to get a haircut at 10:30 and the hairdresser had to wait while I maneuvered out of my chair when my cut was finished. That’s a little embarrassing! I then came home and put on a little makeup since the boys and I were going out. I no longer use an eyeliner that requires sharpening because in the morning my fingers just can’t do it. About fifty percent of the mornings I have my kids spray hairspray on because I either can’t lift my shoulders high enough to reach my hair or most likely my fingers are too stiff to push the lever up and down. I have been so thankful lately for the warm weather so I can slip into a dress or skirt and not have to worry about dealing with pulling pants up or buttoning them. I know I could let some of this go – stop wearing makeup all together and get a cut that doesn’t require any hairspray. Maybe even go to elastic pants. (Okay, seriously, help me if I get to that point!) But, these things are still a part of me and even though they are a workout, they are a part of who I like being and I am not ready to give them up. So, hopefully the pay off is that I “look” good.
As much as I just want to accept this complement, something about it always eats at me. When people say “you look so good” does that mean they think I am making up my symptoms? Because really, how do you look good but not feel good? I always feel prettier when I feel good so maybe I don’t think of myself as “looking good” when I don’t feel good. Maybe I am feeling sensitive lately about how people perceive this disease after sharing with two different friends on different occasions that I have been diagnosed with “severe rheumatoid arthritis.” They both seemed surprised that I could be managing day to day without even a cane or crutches and still be considered “severe”. I understand that this disease can be misleading and unless you sleep over at my house, you don’t get the full effect of how rheumatoid arthritis affects my life because most people only see me during my “good” hours.
I am awake right now, in the middle of the night, because my shoulders hurt so bad I have to wake up and think about rolling over. Most mornings I take one step at a time down the stairs and often have to lean against the wall for added support. Many jobs around our house are completed by the kids. My mornings vary in what I can accomplish which is generally why on my days off work I am at the computer. It is one place I generally feel comfortable. Once my window of time arrives I am able to accomplish whatever my body allows for that day. Then around five o’clock when I sit down for dinner, the circle of events unravels itself again and I begin the struggle to get out of my chair and my shoulders, hips and knees start tightening up again. After this point, I feel physically useless.
Rheumatoid arthritis is tricky to understand unless you are living with it. The symptoms can come and go. Laughing and enjoying time with your friends can definitely help the symptoms move into the background and seeing my friends during the best time of the day is a bonus. Honestly I am glad I “look” good. I want to look good. I don’t want to look like I have rheumatoid arthritis. So, why don’t I just accept the complement and leave it at that? Why do I worry about people not understanding? Not everyone gets a weekly complement of looking good, right? Plus, my friends are very supportive which is another plus. I just need to accept the complement and not put any more thought into it.
This afternoon I am meeting Melissa from Hope Floats for lunch. We have met before and I am looking forward to seeing her again. She will see me during my “good” hours when I look and feel my best. However, since Melissa lives with RA also, she will understand without me even having to explain how the symptoms come and go. It is nice to have friends that have no relationship to RA but also nice to talk with someone that totally gets what you are experiencing. I am looking forward to my lunch with Melissa today. I think I am in need of some RA companionship. But, for now, I really need to get some “beauty sleep” as my dad always calls it or I really won’t even “look” good.
Enjoy your day!