This week, Daniel talks about something all of us dread — flare-ups. He gives us some insight into living with the possibility of a disease downturn always hanging over his head, and the stress that it causes. To find out just what having an impending flare is like, check this week's column out.
When it comes to a disease like Rheumatoid Arthritis, there are many uncertainties. In fact, there are more unknowns than there are solid facts, and if you can count on one hand the things you know for sure about your disease then consider yourself lucky. Unfortunately, in the case of my illness and, sadly, many others, there is one hard fact that we all wish we didn’t know.
Ever since I contracted Rheumatoid Arthritis when I was nine years old, the medicines I take have a shelf life for use. Once this shelf life expires, my disease inevitably flares, and must be tamped down again.
Those of you who have been living with illness for a number of years know that there is one inescapable truth with an auto-immune disease – somewhere, at some time, the disease is going to flare up. There are many ways to detect impending flare-ups – blood tests, an overall feeling of malaise, an increase in nightly fevers, and many other symptoms. Every patient is unique, though, and each body reacts differently to the storm raging inside it. Whatever your indicator may be, I can promise you that after a certain amount of time living with your ailment, you will be able to detect when you have begun the slow downward spiral that leads to increased disease activity. Mine hit just recently, and I am doing my best to forestall the oncoming tsunami.
It is an interesting thing, constantly living with the Sword of Damocles hanging over your head. It is a fact of life that is never far from the front of our minds, and the effects of this knowledge can worm its tendrils into each part of everyday life. Major decisions such as having children or planning weddings, or simple things like taking vacations or deciding when to tend to the garden, are always made with the disease in mind. For those of you out there who are new to autoimmune disease, I can tell you the good news is that you get used to living like that. For those of you who have been sick for years, I can tell you the bad news is that you get used to living like that. It’s our cross to bear, though, and we soldier on as best as we know how.
There comes a time, though, when those of us who are old-hands at living with Rheumatoid Arthritis or Ulcerative Colitis, or even Ankylosing Spondylitis, know our illnesses well enough to predict when a downturn in our health is imminent. People say weight lifters or Navy Seals know their bodies best, but I think it is people who suffer from chronic illnesses who are most familiar with their physiology. When the ramp up to a flare does begin, it can be physically trying, but it is also one of the most mentally stressful periods in any disease progression.
The first stage is denial. I can’t tell you how many times I have heard that old axiom, but it does ring true in this instance as well. When we wake up stiff as a board in the morning, and the pain medicine is just not working like it used to, your first response is to ignore it. I usually scramble to find excuses for why I am having increased pain, and I have come up with some whoppers in the past. The lies we tell ourselves are the greatest of our untruths, and this is no exception. Lies like it was the eggplant I ate the week before, or it was raining for the last three days, or I have increased my activity level, explain away pain. Unfortunately, deep down, I know that none of these excuses has any real merit.
Eventually, once I stop denying that the disease flare-up is bearing down on me, I enter a form of the bargaining stage. I will do whatever I can to prevent my health from deteriorating any further. If I have to increase one of my medications than so be it. If I have to stop certain activities that I enjoy, than so be it. No single thing is worth living through another minute of increased disease activity, at least as far as I see it. Sadly, all I end up doing is prolonging the inevitable, but sometimes that’s comforting enough to make it worthwhile. If I need to make it through a certain event on a certain day, then I usually just pop a few extra steroids and keep my fingers crossed. Inevitably, though, it always breaks through, and whether it’s mild or severe, and whether it lasts a day or a year, it’s never pleasant.
The signs of impending doom differ greatly for each individual, but the fear these signs produce is visceral and palatable. My indicator manifests in the form of increased morning stiffness to the point where it lasts almost all day, and my pain medicine no longer does it job fully. I have a unique factor that puts my flare-ups on a set schedule, though. This aids in lessening some of the fear that comes with not knowing when the disease is going to act up, but does not get rid of it entirely, as the timetable I follow is only a rough guide.
Ever since I contracted Rheumatoid Arthritis when I was nine years old, the medicines I take have a shelf life for use. Once this shelf life expires, my disease inevitably flares, and must be tamped down again. My window of opportunity for drug use lasts anywhere from one year to almost three years. I do not find many medications that work to keep my symptoms at bay, but when I do eventually find a medicine or combination of medicines to beat my disease back into the hell from whence it came, it never lasts. My personal thought is that my body eventually learns to overcome whatever changes the medicine makes in my physiology, but I’ve been told that it’s impossible with bio-drugs like Enbrel, Humira, and Anakinra. I guess someone forgot to tell those drugs, though, because it has happened with all three.
So here I am, with the dark time approaching once again, and my thoughts turn to my last flare up. I was sixty pounds heavier due to increased steroid use, and my feet were frequently swollen to the size of clown shoes. Will this new flare-up last long? Will my belly stick out like an Octo-mom’s again? Will I be able to walk without a cane for much longer? When it comes, how long will it last? These are the questions swirling around in my head, and unfortunately, I cannot even begin to answer any of them. Those of you who live or interact with someone ill, be aware that it is a hard life to live with the reaper nipping at your heels at all times. Every now and then, he catches up, and it’s not pretty.