It’s amazing when a therapy works–when all the meds line up perfectly and a rheumatoid arthritis patient can feel almost fabulous, full of energy, and productive. Maybe not exactly like before the onset of rheumatoid arthritis, but a new form of normal–a place where RA doesn’t seem to be as limiting. It’s such a relief feeling semi-normal at a lower pain level and improved activity rate.
It’s easy to get caught up in the so-called normalcy and maybe even take it for granted. Being able to go to work plus clean house and do grocery shopping is wonderful. Getting ready for the day, having the energy to wear make-up, and even wearing tighter-fitting clothes (finally able to zip, button, pull, and clip) are added treats. They are the everyday things that aren’t possible to do when flaring. Smiles are brighter, laughter comes easier, and making plans for the future become broader with more possibility. It’s amazing riding that cloud of hope and finally having an ‘I-got-this’ feeling that has been elusive since diagnosis.
Then, out of the blue, the swelling starts in the middle of the night. The unique pain stabs and throbs. It gets worse and worse until the morning, when getting out of bed is a slow, stiff process with incremental movements bringing on excruciating pain.
It’s not the pain that is devastating at that point. People with RA are used to pain, they build a certain tolerance, they find a way to cope with hurting all the time. It’s the emotional disappointment that is crushing. Another flare. Another medication not working. Another round of prednisone that is going to bring about overeating, a grumpy-bear demeanor, and a sense of hopelessness and despair. Another two to three months before finding out if the next round of yet another new treatment is going to hold the disease at bay. Another set of icky side effects to endure.
It’s crushing to go back to extreme fatigue, not being able to complete daily chores, dragging through work trying to concentrate through a haze of hurting. Back to having the energy for only resting and being completely unproductive. All those steps back when normal was just within reach.
The hard part is finding a positive thought or goal to hold onto, because only positivity can bring a patient out of the bitter disappointment. Finding something hopeful saves a person from going into depression and making the disease worse.
Experiencing this roller coaster isn’t for the faint of heart, but I’ve found that concentrating on a goal–something that makes me happy inside my heart–has to remain my focus in those dark times. Holding on to the hope that the next treatment will be the one. I have to will myself to be positive, and most of the time I succeed. When I don’t find that silver lining, the realization hits that I have to be the one in control of my mindset. The body is going to do what it wants, there is no control over that, but, damn it, I can and will control what I’m going to let it do to my mind. I refuse to let it rule me and determine my future. Mind over matter, at least for me personally, is what is going to save me–that, and a lot of prayer.
It’s the only control I have.
What is RA? A general explanation can be found here.