Posted in Advocate, Health Activist Challenge, NHBPM

NHBPM Day 7: The Rollercoaster: Case of the Mondays


Today’s NHBPM asks: Case of the Mondays. Write about something that gets you down, burns you out, or makes you sad. Purge it in a blog post. Turn it around at the end. Tell Tuesday why you’re ready for it.

The past few days, I have dealt with a flare up and I have had a lot to think about as far as how long it has taken me to actually understand or describe what it is like having rheumatoid arthritis.  For most of us with RA, the outside world cannot even begin to understand or grasp what it is like living with RA.  Having RA has forced me to focus on the good days and lay little emphasis on the bad ones.  The bad days are the ones that are relevant to this NHBPM prompt. The bad days with RA are the ones that burn me out and make me sad because RA takes a toll on me physically and emotionally.

Case of Monday

So, it is Monday and a bad day is a flare-up day.  For me to simply tell others some days are good and some aren’t doesn’t even begin to define the pain, fatigue and the general “just feeling sick” aspects of RA.  I have learned that there is pattern that my flare-ups follow. It starts out emotionally and then moves on to the fatigue and pain.  It is important to note that not everyone has the same pattern but I believe that every patient has an understanding of how their flare-ups evolve.

My perception of the flare-up is rollercoaster of pain, fatigue and not feeling well.  When I first started having symptoms, I would get this feeling like something wasn’t right. Exercise and physical activity became a major task because my muscles were starting to feel tense and tight. Even though my joints and muscles were aching, I still had more good days than bad ones. After that I started to feel, lethargic and sleepy all the times. These smaller flares would last for days, were low in severity, and were not enough to prompt my doctors to suggest anything more than stress. As the disease progressed, I started to feel irregular twinges, sometimes stabbing like pains that were over as quick as they came.  I started to feel consciously aware that I was not feeling well and aching all over.

At some point, I began to have a better understanding of what I was feeling and was able to describe it clearly to my doctor – fatigue, pain, malaise, swollen joints, and low grade fevers and chills.  By the time I was able to describe how I was feeling, the disease had reached new realms.  With this progression of the disease, I was able to better define the spheres of pain I endured, acute aches, burning pain, stabbing pains and sometimes, piercing pain.  Sleep became difficult, my weight was fluctuating (up and down), and there were periods where my vision was blurred. Concentration because difficult and the brain fog was debilitating.  All of these symptoms were consistent with a flare-up and these are the symptoms of my bad days with RA.

An RA flare-up is what sufferers refer to as a bad day.  Your bad days are the days when your body is rebelling against you and feels like it is under attack.  The irony is that when you get used to this feeling, the pain starts to slowly subside, your joints start to move more evenly, and the swelling decreases. This is the RA rollercoaster that so many RA patients describe.

Tuesday is here

The flare-up is Monday and we are making room for Tuesday.  The flare-up has finally passed and you get the compulsive need to get things done. You go back to sleeping better and you start to feel more rested. Your emotions are now in check and you are able to feel positive.  Even during a flare-up, I remind myself that everything is possible.  When I first diagnosed, I found myself wondering whether RA kept me from being a good parent.  What I have learned that even it feels like RA is winning, I know that my children look to me to set an example for them.  I want them to see that success is possible despite the setbacks.  There are days when I feel emotionally and physically drained but all I have to do is look at my boys and see how independent, strong and empathic they are despite RA in all of our lives.  I remind myself that they get that from watching me. While my kids think they need me, they don’t realize that I need them too. It just takes a smile, a giggle or that look that they are so glad to see me after a long day for me to be reminded how blessed I am. 

This post was written as part of NHBPM – 30 health posts 30 days:  http://bit.ly/vU0g9J   

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