I have never really talked about my condition because it has taken me so long (years) to actually understand it or even to describe to those who do not have the disease. In addition, the outside world (those not suffering from RA) do not understand nor can begin to imagine what is like living with Rheumatoid Arthritis.
For me to tell others that “some days are good and some aren’t” doesn’t even begin to define the pain, the fatigue, and the general “just not feeling well” aspects of RA. I have learned that there is a sequence that my flare ups follow. It is emotional and physical depending on the severity of the flare up. Of course, not everyone has the same sequence, but every RA patient learns to have some understanding of their condition.
For me, it is best described as a roller coaster of pain, fatigue and not feeling well. In beginning, I felt like things just weren’t right. There is nothing really wrong expect a feeling that things simply just aren’t really right. Exercise and physical activity became a major task since my muscles always felt tight. Even though my muscles were responding to movement and I had more good days than bad – that feeling well never really lasted. I would start to feel lethargic, tired and sleepy all the time. (These were the first signs that something was wrong but despite seeking medical attention, there was never a “real” diagnosis offered by the many doctors I visited.) The stages would last for days, vary in terms of severity, and sometimes, I would feel just downright awful. At times, there is occasional joint pain, sometimes all-over body pain, nothing lasting long enough for me to seek immediate medical attention. As the disease progressed, I started feeling irregular twinges, sometimes stabbing-like pains that were quickly over. I started to feel consciously aware of that “not feeling well” feeling and aching never-ending pain-pain that went from sporadic to persistent.
By this point, I began to have an understanding of what I was feeling enough to describe it to my physician – fatigue, pain, feeling of malaise (dissatisfaction with life), swollen joints, and low grade temperature (even chills). You could even go further and associate that “not feeling well” feeling with depression. (Yes, it is that extreme.) By the time I was able to describe what I was feeling, the disease had reached a new realm. This included new spheres of defining the pain: acute aches, burning pains, stabbing pains and even impaling pain.
Sleep started becoming difficult. My weight was fluctuating (up and down) and there were periods where my vision would be blurred. Concentration started to become difficult. All of these symptoms are consistent to a flare-up, not necessarily what one feels every day. This is what RA suffers mean when they say “some days are good, some days are awful.” “A bad day” is when body is rebelling against you and feels like it is under attack. The irony of the situation (I call it God being cruel.) is that just when you think this is “normal” for you, the pain starts to subside (slowly), your joints start to move more easily, and swelling decreases. This is what I mean by the roller coaster. There are still stabbing pains, but the heat and aches slowly quiet down. Movement will return, again slowly and with great effort.
When your most recent flare subsides, you start to have to compulsive need to get things done. You go back to falling asleep much quicker and you start to feel more rested…This is short lived and just when are relieved that the flare has passed, a new one starts. Thus, the roller coaster of emotions and feelings I mentioned earlier. I will talk about the emotions of having a chronic disease and the process of inflammation in another post. I am currently having a flare-up and I really needed to get this out as this is an appropriate time, if any, to explain what a flare up a.k.a.[a] bad day(s) is/are like.