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Is This Courage?

Is This Courage?

It’s been a tough week. After getting my hopes up that the third rheumatoid arthritis drug added to my regimen might be heading me towards remission, I’ve had a bad flare. It hurts to walk, it hurts to stand, it hurts to sit, and it hurts to lie down. At night I’ve needed a muscle relaxer and painkiller in order to fall asleep, and a couple of nights I’ve had to add a sleeping pill to boot before I was able to finally fall asleep. In the mornings the drugs and the rest have brought my pain level down from a seven to around a four on that ever-popular 10-point pain scale, yet my head has felt full of cobwebs from the hangover of the prescription drugs. My rheumatologist put me on a round of prednisone, and now on top of feeling groggy I feel like a jar of fireflies has been emptied into my cobweb-laden brain, flitting and buzzing from place to place inside my head. My skin feels like it has little electric currents running under it, making me feel jumpy and on edge. All the drugs help the pain and inflammation, but the side effects add on another layer of discomfort and unease. I feel like I can’t win with them, and I can’t win without them.

When I have a hard week like this, my life doesn’t stop. I have a three-year old son and five-year old daughter to care for, and recently my part-time job disappeared and the only option I had in order to continue working in my school district was to go full-time. I am a behavior specialist who works with high school students with problematic behaviors. It’s a hard job. My days are very busy, with few breaks. I eat lunch at my desk, and sometimes I don’t get a chance to eat it until 3:00 in the afternoon. At the end of the day I go straight from work to pick up my kids from their afterschool program. By the time we get home, it’s already time to start dinner. It’s exhausting.

Since I went full time a few weeks ago, I’ve felt like I’m running on fumes by the end of every day. Once my flare happened, I couldn’t keep up. I’ve been able to make it through each work day, but by the evening I’m in so much pain I’ve been unable to do any cooking or cleaning, and I’ve not been able to do half of the things for my kids that I’m used to doing. My husband has been doing the majority of the evening work: fixing dinner, cleaning the kitchen, bathing the kids, getting them ready for bed, and reading their bedtime stories. He does this without complaint, but I can tell how tired he is. He wakes up at 4:00am every morning to return work emails before getting the kids ready in the morning, taking them to school, and then putting in a nine or ten hour day running the business he owns. Watching him take up all of my slack, while praying that my body will return to its non-flare state so that I can once again do the things I typically can do, I have felt defeated.

This flare has left me feeling at the mercy of my confused immune system. I feel powerless, vulnerable, and like I have very little control. The other day, after a slow morning of getting ready for work while experiencing the pain of standing on the tile floor of my shower and of getting dressed, I was finally ready to go out the door. Pouring my to-go cup of coffee, I told my husband how much I appreciate all he’s doing. He then said to me, “I admire your courage.”

I was stunned. Courage?

I replied to him, with tears welling up in my eyes, “Is this courage?”

I usually associate courage with heroic deeds involving people putting their lives on the line to help others or to stand up for their rights. I hardly felt heroic. The night before the pain had gotten so intense that I cried in front of my children while I waited for the heating pad and painkiller to kick in. The last word I would have used to describe myself is “brave.” Yet, when my husband said that he admired my courage, it shook me to the core, and has given me pause to reflect.

Maybe it is courageous to be in a lot of physical pain, yet get out of bed anyway to get ready for a long day of work I’m dreading. Perhaps it is brave to do whatever it takes to get through a workday, and then another, and then another, so that my family can have health insurance and so that all of our bills are paid. When I’m in a flare, I’m unable to do all that I want to do for them, but I’ve always done whatever it takes to make sure that not only are all their basic needs met, but that they get plenty of hugs and kisses and “I love yous” and “I’m proud of yous” too. Once I arrive at my job, I do whatever it takes to make sure that those struggling students get all the support we can provide, even on the days when I feel terrible. As I reflect on all of this, I realize that it is possible that just making through a day feeling the way I’m feeling may in fact be courageous.

RA is a powerful opponent. Insidious, it resides inside my very body, turning my own immune system traitor against me. I could stop fighting. I could give up. But I’m not, and I won’t. I will keep striving for health, doing all the things I can to support my body’s needs. I will not throw my hands in the air or the covers over my head. Rather, I wake up and face each day and get through it the best I am able. When I take a step back and look at that, it does indeed seem brave. This flare has caused me to look at some of my deficits. Yet, underneath all the disappointment and frustration, I now see that there indeed lies courage.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • CynthiaV
    1 year ago

    Thank you for sharing this with me. You have once more given everyone who reads you pause to consider their own strength and courage. Their own private victories against this awful disease. Our victories may not outweigh our defeats but they are victories nonetheless and they give us the courage to continue.

    One of my brothers in law who along with his wife is very supportive of me and have educated themselves about RA once told me I was the toughest woman they ever knew. They felt this way because as they shared everyday I stood up one more time than I got knocked down. It’s a trait my Marine Corps father instilled in me. He told me as long as I did this I was a winner, someone incapable of being defeated. He should know as he fought in some of the deadliest battles in the Pacific during WWII. He was my hero. Even when battling the cancer that took his life he never asked, “Why me?” He never complained. He just took it day by day living each day to the fullest. That is the kind of courage I want. The kind of courage you have. The courage of an indomitable spirit.

    Your wonderful husband is right, you are courageous Tamara as are so many who get up every morning and fight this incurable disease. We refuse to allow RA to strip us of everything, of our very lives. So we stand, as painful as it is and just as painfully step out our front or even bedroom doors to greet a new day and in our own way, conquer it.

    Gentle hugs…

  • Tamara Haag moderator author
    1 year ago

    Thank you for sharing your father’s legacy that he instilled in you and your own personal journey in acknowledging your own courage. You have written beautifully about the power we have to get back up after each knock down, and your words are inspiring. Thank you for being in our community! All the best, Tamara

  • CynthiaV
    2 years ago

    Wow! Hug that man for me and hug yourself too…

  • CynthiaV
    1 year ago

    Hah I never realized I commented on this a year ago. Well a year older, a year wiser…

  • Tamara Haag moderator author
    2 years ago

    Thank you Cynthia! I will, while sending you a gentle hug as well! Thanks for your kind words and for being in our online community, Tamara

  • elisee55
    4 years ago

    This is a touching account. I can relate. While displaying courage is admirable, (and i understand that working = health insurance in the US; I’m from Canada), we need to be very careful to watch for emotional burnout. The writer is still relatively young, and so may be able to maintain such a high level of functionality. BUT – my doctor explained to me that stressing our bodies to this level is equivalent to smoking a pack of cigarettes a day. Our risk of cardiovascular events increases with age. And RD also potentially increases this risk. We need to be careful to look after ourselves. When we work in an altruistic career, our desire to be there for everyone sometimes usurps our self care. I worked for years sacrificing a lot for my clients and their families. And after 30 years, got thrown under the decisions based on present realities. Just be sure you don’t give more than you really can. If your present situation is temporarily impossible, a person can push through. But over time, evaluating the risks to ourselves and our families needs to take precedence. Be courageous yes. But be wise too.

  • Tamara Haag moderator author
    4 years ago

    Thanks so much for sharing your perspective and this information from your doctor, Elise! I have been struggling with those thoughts, and am trying to make my life more manageable long-term. I appreciate your thoughts on this matter, and am sure many of us can benefit from taking them to heart.

  • Elizabeth Riggs
    4 years ago

    My husband, too, is a rock and helper for whatever I need. He also thinks I am brave and courageous. It took me a long time to “get it.” But both our husbands are correct – those of us who get up and get on with our life despite ongoing pain, fatigue, and whatever drug side effects are going on at the moment.

    Bless the husbands and wives who are supportive and helpful to us with RA and other autoimmune diseases!

  • Tamara Haag moderator author
    4 years ago

    You said it, Elizabeth! Thanks so much for sharing your thoughts!

  • Kathleen Pimlott
    4 years ago

    I loved this entry. Wow! That was exactly what I needed to hear today.

  • Tamara Haag moderator author
    4 years ago

    I’m so glad! Hearing those words felt like good medicine, so I hope they can help other people with similar struggles feel the same way.

  • Kreekyjoints
    4 years ago

    It truly does take courage to live with RA. I truly cried when I saw what your husband said. I loved this article. Thanks

  • Tamara Haag moderator author
    4 years ago

    I’m so glad it spoke to you! Thanks for sharing!

  • Sharon Fritz
    4 years ago

    So very well said. It takes so much courage to keep on going day by day. I sure think courage is the right word. Your husband was right on. Blessings.

  • Tamara Haag moderator author
    4 years ago

    And to you, Sharon!

  • Dave
    4 years ago

    As I read your account of what you are going through right now, It is almost a carbon copy of where I am at this time. Right in the middle of the worst flare I’ve had since beginning treatment last May. Dr. just added Humira to the drugs I am on already, (MTX and sulfasalizine.) I have been out of commission for this whole week with pain all over the place and have not missed any time from work (That, in itself, took some doing.). It has been a struggle and I have spent just about all of the time away from work on the couch. Just took the 1st dose of Prednisone a few minutes ago along with a dose of dread of how it is gonna make me feel. This afternoon I will stab myself with that dreaded dose of MTX that will make me feel even worse for 48 hours. I believe that your Husband is right, it DOES take a certain amount of courage just to face the day when one is going though what you and I are at this point in time. Tell your Husband that I said “Thanks.” I needed a little encouragement!

  • Tamara Haag moderator author
    4 years ago

    Thanks so much for sharing your experience, Dave! I’m sorry you’re having such a hard time. While it helps to know we’re not alone, I do wish there weren’t so many people suffering. I hope the prednisone brings some relief. In addition, it sounds like you are experiencing some pretty significant side effects from the methotrexate. If you haven’t already, make sure to discuss this with your doctor. I didn’t tolerate methotrexate well at all, and my rheumatologist ended up switching me to Arava, which has been a much better drug for me. I hope you see the end of this flare soon! In the meantime, I am thinking of you and wishing you well, Tamara

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