Most mornings, I wake up to pain. Sometimes, I don’t always realize it right away but when my feet hit the ground, pain becomes my reality. Every day is generally the same. My body really hasn’t changed – I mean every bone is still there and intact. I am sore but I am still functional. In other aspects, it has changed. I have gained weight from medication and from not being as active as I was before. Sometimes I drop things because my hands have a way of giving out on me. Other times, I can’t manage tasks the require hand and finger coordination, i.e. like opening a sealed bag of frozen vegetables or that cheese stick that my three old wanted open yesterday. I eventually get these things open but it takes a lot of work to get my hands to cooperate.
I used to have dreams about being healthy but I don’t any more. The longer I live with the reality of rheumatoid arthritis and fibromyalgia, the more I know that my pain, to some level, will always be there. I no longer feel disappointed that I didn’t go into remission or that I am not pain free. It took me a long time to get here and while I am a believer in strong effort, faith and even possibility, I know that I am in a lot better place than I was four years ago. I know that things could have gotten worse. They didn’t and if anything, they got better.
People in my life – coworkers, friends, family – still have this notion that if I am moving, I am not in pain. As a matter of fact, a coworker commented yesterday about whether I was having a pain free day simply because I was moving with ease. The truth is I am not having a pain free day. I am actually having a not-so swell day with pain. I learned a while back that a not-so swell day is a good day. After all, I am still a productive member of society.
Most mornings are usually the same for me. Upon wakening (after hitting the snooze button way too many times), my feet and ankles are stiff and I gracefully (as if it is possible) limp to the bathroom. How I would love to stay in bed an extra half hour or hour but I know that is not even a possibility. I still have full time job that I need and two children that need morning routine assistance. My older one is twelve, and his morning routine assistance usually involves my reminding him (over and over) that it is time to get up and then putting his shoes and coat in his view as he graciously takes his time while I am always in a rush. I grateful that – for the most part – he is independent. On the other hand, my three year old needs me to get his clothes out and my assistance getting ready. He can dress himself but that would involve a lot of silliness and putting off on his part so really, it is my job to get him ready in the morning. Despite all the morning chaos at my home, I wouldn’t have it any other way. These are reminders that I am alive and capable, albeit not pain free (long sigh).
Everyday reality looks me in the face and often times, reality is imperfect as am I. However, I know that I have to have strength and courage to face life and reality. I often mind myself that my children need to see that success is possible despite obstacles. They look to me for answers and they want to see safety and protection in my eyes. For me, the relationship I have with pain cannot only be seen through my eyes but it is also written all over my face. I know that my kids see my battle with chronic pain but they also see my courage and my strength. I used to think that I was much stronger before RA and Fibro but I know now that I am stronger than I have ever been because of RA and Fibro.
I remind myself that life still goes on despite my battle and tainted relationship with chronic pain. The reason I used the word “tainted” is because I cannot imagine any of us having a good relationship with chronic pain. Our relationships with chronic pain are contaminated, poisoned and every other fouled relationship you can think of. There is no good or harmonious relationship with chronic pain. The only positive spin to this kind of relationship is “tolerable.” We are tolerably putting up with the pain and that is all the positive we have. We are also working to stay functional and are willing and eager to take care on all the challenges that life with chronic pain has to offer.
Each day living with chronic pain is different but for the most part, the days are pretty much the same. Some days are better and some days are worse. Often times, the evening prior can predict the following morning. As each day progress, I feel thankful and blessed for all I have accomplished with chronic pain and despite it. I learned following the first year living with RA and Fibro that making a choice to try to outrun my pain would be my downfall. I learned that through trial and error.
There is always some price to pay for overdoing things and for not managing your conditions. It doesn’t mean, however, that we shouldn’t continue to look for rainbows and sunshine. Modern life is for the most part, “business as usual.” You know how businesses always open – rain, snow or shine. Life goes on despite how we feel – both physically and emotionally. That is why we have a choice. We always have an option of one of three things. One, we could try to out run our diseases by not accepting them but there is a big downfall to that. Two, we could take the attitude that our lives are over and there is no use is continuing to live full lives. Or, we could take the third approach which is my favorite, we accept that we have limitations but we don’t let the diseases we have and chronic pain we live with dominate our lives. Because the biggest fact of life is that life goes on. We just have to decide whether we want to be a part of that life.
My relationship with chronic pain is what I call my work in progress. I went through the trying to outrun my disease option and I also went through the “there is no use” option as well. In the end, I found that acceptance of my limitations and pain didn’t mean that I couldn’t have an active life. In fact, four years later nothing in my life has changed but my attitude. My relationship with chronic pain as evolved over time. I know that chronic pain is a part of my life and so does everyone else. However, I refuse to let anyone compare me to the stereotype of chronic pain.
Looking at my life and all I have accomplished before and after chronic pain came into my life, I don’t have any regrets. I feel so blessed to have another day to share with my children, my family and my friends. I see everything that I am and have always been: strong, ambitious, content and aware of my obligations. What I know is that balance is the most significant key to living a life with chronic pain. The second most valuable key is the first “person” I speak to every morning. My morning chats with God are reminder that I am blessed despite RA and fibro being a part of my life. I pray for strength and I pray that my health continues to improve. I also pray that RA related complications stay away because my kids need me right now and I cannot imagine how chaotic their lives would be if I got really sick or worse. My relationship with God has only gotten stronger the longer I live with chronic pain.
My relationship with chronic pain has taken a positive note in the past year. This happened because I made a choice to embrace my pain (without giving in to it) rather than trying to work against it. Every morning is a reminder that I live with chronic pain but it is also a reminder that I am alive and functioning. For that and for my faith in God, I am grateful.
- Parenting with Chronic Pain (livinglifewithraandfms.wordpress.com)