My Relationship with Pain


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.

About Lana

Since I started at Blogger, it took me two years to pull together an “about me” section which I have now moved here. When contemplating about writing an “about me” section on my blog that would talk about my diagnoses and the effect that they have had on my life. Every time I start to type, I am not sure what it is that I want to say. I just know that what I have to say has to have a profound effect on those reading the words and having all the same questions that I have had for some many years and even the questions that I still have. When I was enduring a variety tests and looking for answers, all I wanted was closure and that meant an answer for what was going on inside of me for so many years. At some point, I thought it was normal to feel sick everyday of your life because if it wasn’t normal, then it would mean that I wasn’t normal. After years of misdiagnosis, mistrust towards so many medical providers and frustration at the lack of answers, I started to wonder if what was wrong with me was all in my head. It took time but eventually the answers came. From the day that I received my first diagnosis, rheumatoid arthritis, I promised myself that RA would not win. A couple months later, I was also diagnosed with fibromyalgia. In beginning, I went through a variety of emotions: Fear, denial, optimism, frustration, numbness, and skepticism. My emotions would change several times day and hope and acceptance were a long ways down the road. In beginning, I thought that I would fight the inevitable but it didn’t take very long for the diseases to win. I became depressed even though I insisted to everyone in my life that I was not depressed and I kept going on because I had to. I leaned on my love and dedication to my children as my coping mechanism. I knew that no matter what I was going through I still had to be their mother. The years of trying to find answers taught me and gave me patience, dedication, strength and survival. I don’t know who I would be without that experience. So many times in my life before RA and FMS when life handed me lemons and I always threw them back. With RA an FMS, I can’t throw the lemons back because it doesn’t work that way. I just have to keep reminding myself that the lemonade will get sweeter with practice. Steroids, a lack of energy, and physical pain take a toll on you. I stopped stepping on the scale because I am tired of the weight gain. I stopped visiting friends and family who think that my conditions are simple and that I am just being a drama queen. I stopped trying to be perfect, having an impeccably clean home, and trying to be everything to everyone. What the illness does to us, we cannot control. How we respond, how we choose to fight back, and how we go on is our defense against the war waging inside of us. I am not saying it will ever be easy but it is what makes us exceptional. I can no longer carry my toddler and sometimes, it takes a lot out of me to make it into work every single day. There are nights where I lie awake staring at the ceiling whispering and repeating the words “I am in so much pain” until the sleep finally consumes me. I didn’t invite RA or FMS in my life. They just showed up one day and never left. I used to be a planner and my diseases ruined any plans that I will ever have. When I was pregnant with my now toddler, I scheduled the induction the day after I started my maternity leave because I wanted to spend as much time with my kids as I could before I went back to work. I refused a C-section when it looked like things weren’t progressing because it would ruin the “plan,” and now, I don’t make plans. I just live for the moment and if there is anything I hate more than the unexpected, it is disappointment and failure so I stopped planning. If I have to live side by side with my conditions, I have to understand that I cannot always win. Imagine being a dark room and trying to make your way around. Then, imagine that you find a light switch and the room becomes dim, not bright, but enough for you to navigate your way. For years, I was in the dark about what was happening to me, and then one day, the room became dimly lit. Of course, I wanted closure but instead I found that there were more questions than there were answers. I learned that I had to change my perceptions on what closure meant to me so that I could gain some normalcy back into my life now that I had some closure. One of the things that I do know is that I am not alone and that there were so many exceptional people who, like me, are looking for closure, answers and normalcy. I share my experiences because I want to live a “normal” life and I want others to see that it is okay to have a normal life and to keep dreaming, trying, believing and looking towards the future. I write about my life with RA and FMS, my diagnosis, and my quest to find answers and I continue to do so because when it gives others hope it gives me hope too. My blog is about who I am, my struggle for answers, and how I have made lemonade. I have found through my experience and the experiences of others dealing with the same conditions that living with arthritis and/or an autoimmune disease gets easier even though the disease gets harder. RA and FMS may control how I physically feel but they do not control who I am or how I choose to respond. It is never going to be easy and some days, the emotional part is worst than the physical but we all struggle with something and for me, it is RA and FMS. I am the patient advocate for two Alliance Health online communities, Arthritis Connect and Fibromyalgia Connect. It is something I am very proud of and I ask that you join me so that you can find answers and give support to others who have a multitude of questions.
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7 Responses to My Relationship with Pain

  1. Terry says:

    It sounded as if the first paragraph was my life until it got to the 3 year old part. I gave up on remission for my own self reliance. I couldn’t sit around dreaming of something that was not happening. For those that do experience some sort of remission, I’m happy for them. Living with a chronic disease is very much trial and error, but somehow, I think we are both doing ok considering.

    • Lana says:

      Terry, I think we are all in the same boat when it comes to having a relationship with chronic pain. We will never fully accept it even thought we understand that remission is not even a possiblity. You are right about the trial and error part. Pain is simply apart of our lives.

  2. Marianne says:

    This sounds all too familiar to me also, Lana. People who don’t have chronic pain have no idea what it’s like. Keep up the great work, you’re doing a good job.

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