Terrible, Horrible, No Good, Very Bad RA
Having rheumatoid arthritis means that there will always be days where it feels like I’ve woken up on the wrong side of the bed. It doesn’t matter how much I may have been looking forward to the day ahead, if I wake up stiff and achy, it’s hard to start the day with a cheery attitude. For many people, RA causes morning stiffness, which can take minutes to hours to loosen up. On top of that, RA also causes fatigue, so even if I’m able to get a good night’s sleep (which is a big “if”) that doesn’t ensure that I will feel rested in the morning. I am so used to the stiffness and fatigue that I can generally move through the morning without it dampening my mood too severely. However, if I wake up in a painful flare, it is extremely challenging to be happy.
Remember Alexander in the children’s book, Alexander and the Terrible, Horrible, No Good, Very Bad Day? Waking up with gum in his hair, his day starts off badly and continues to get worse. He proceeds through a day filled with minor setbacks and hardships. When I’m in a flare, I can really relate to Alexander, as it just seems like nothing goes right. It starts with the difficulty and discomfort of getting out of bed, and continues as the pain makes each small activity a challenge. Most people would never think of brushing one’s teeth as a trial or tribulation, but with aching fingers, wrists, and elbows even this minor action can be painful. Breakfast isn’t any easier, as a half-gallon of milk seems to weigh far more than the four or five pounds it actually weighs when elbows and shoulders are achy. Even the action of feeding myself can be painful, as the weight of my fork or spoonful of food feels like it weighs pounds rather than ounces. When every small motion causes pain, it is incredibly taxing and serves to multiply the fatigue. Sometimes I am exhausted by the time I leave my house in the morning, with a full day ahead I must still get through.
Such days are particularly emotionally trying when I have something planned. Perhaps I’ve made plans with friends, have a project I’ve looked forward to completing, or am hosting a get-together. These are things that on a good day bring me joy. Yet, if I’m in a flare such activities feel like a hardship rather than a source of joy. I’ve had to cancel plans more often than I can count, and if I am able to proceed with my plans, I feel exhausted and overwhelmed rather than excited. On top of the fatigue, pain makes me irritable and cranky, and things that I would be able to let roll of my back on a good day become sinkholes for my mood. Rheumatoid arthritis is a sneaky disease, constantly fluctuating in intensity. There’s never a guarantee of a low-pain day, and when unexpected pain and/or fatigue strikes, it’s nearly impossible for my mood to be unaffected.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?