‘Would you deny a diabetic their insulin? Or a cancer patient their chemo?’ Neither of these patients chose their illnesses, and their choice to be well is not stigmatized. Why then, are chronic pain patients limited in the medication they desperately need to treat their conditions?
Over the past couple of months, I’ve noticed a steady uptick in the frequency and severity of my flares. I’ve gone from having a peak every other week (this, and not true “remission,” is where I often strive to be), to once a week minimum, to my now current of almost every other day.
While many people who are feeling the same thing right now can attribute part of these changes to the weather, I’m unable to do so. Down here in the southern hemisphere, we’re experiencing some of the warmest, most pleasant, spring weather possible. Which leaves me with the fact that I have, indeed, had to cut my weekly methotrexate dose in half because of elevated liver enzymes. Hence, the increase in my disease activity.
And as my rheumatoid arthritis “comes back” (even though it never really went away), there are two things that I’ve realized.
First, I’m not experiencing any feelings of guilt or blame. In the past, I’ve always beaten myself up a bit whenever I started having more flares. I’ve always wondered if there was something that I was/wasn’t doing to make my condition worse. Now, I’m a huge advocate of taking care of myself as much as possible, and I’ve never limited myself to just pharmaceutical treatments, but over the years I’ve learned that no matter how hard I try, sometimes I’m not going to be able to “control” my rheumatoid arthritis. It’s just going to take its course, whether I want to or not. So rather than spending my oh-so-precious limited energy on trying to prevent such flares, or on trying to figure out what caused this current flare (a game I played for so many years), now I just sit back and relax as much as I can…increased disease activity or no.
Second, I’ve realized that each and every new flare is an opportunity to learn something new; to figure out how to better cope with the pain and disability.
Yesterday I was flaring much more than usual. My right hip–*the* one joint in my body which up to now has not been affected by my RA–would occasionally scream out in pain midstep. The soles of both feet felt like a hot iron was being pressed against them, and…oh well, you get the point. The inflammatory process was moving full sail ahead, and I was in a lot of pain. And while I knew I was flaring, I mentally refused to declare as much…not in an attempt to deny what was going on, but as a way to focus on something else, despite the pain that I was experiencing.
As I sat there, reading, simultaneously watching a football game on my computer while watching a movie on the television screen, surfing the Internet, and so on (not so much in any panic or distraction mode, as this is what I do most evenings)–even having left my bed to spend time in the living room (I love my bed, but sometimes I just get absolutely tired of spending so much time there), a funny thought crossed my mind, as I somehow managed to have a relatively “normal” evening. All at once, I somehow managed to push myself forward, hold myself back, completely accept the pain, and not focus at all on the pain.
I chuckled to myself. As many personal successes as I’ve had in my life, such as getting my masters degree from Harvard University, etc. (and here I’m referring to those “visible” successes that are there for so many others to see, things which in all honesty I’ve never been too into), they come *nowhere* close to many of the private successes that I’ve been able to experience during my journey with chronic pain…and highest on this list has to be the ability to maintain control of my thoughts, and to feel calm and balanced, no matter how bad the pain might be.
I doubt that there are many other personal accomplishments, which can rank higher than this.
As I got into bed, having already started to fall asleep in front of the television, I noticed that the pain was there, hovering, ready to take over. I knew what I was in for, and there was absolutely no way of avoiding it. For the umpteenth time I sensed that (overwhelming) fear–that “oh my god, what do I do now?”–floating around in my head. I did, however, something that I don’t normally do when the pain is that bad. I absolutely refused to go down the path of feeling scared and anxious, of wanting the pain to go away.
So I invited it in. Literally. I told my pain that it was welcome in my body.
And just like that, the fear passed. Within a couple of minutes, I was soundly asleep.
The storm was coming, but I was calm.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
What advice would you give to someone who has just been diagnosed with RA?
Make sure you are comfortable with your rheumatologist as it makes the whole process a lot easier. Don’t be scared to ask lots of questions no matter how trivial but most importantly don’t be afraid to ask for help.
Do you use any mobility aids?
Yes I have an electric wheelchair for in the house, a manual wheelchair for going outside in so people can push me. They were hard to accept but they mean I can still do things I enjoy.
How has living with RA helped to improve your life?
Its made me realise how strong I actually am! Its made me stop and enjoy things more and reminded me to have fun it lifts your spirits when you have something to look forward to.
Do you have any visible signs of RA?
Yes my hands are bent over, my left knee has fluid and often swells.
Can you please describe some of your favorite coping strategies for living with RA?
To just smile and get on with it, I tell myself I can get through this, a smile helps.
Can you please describe your current medical (traditional and alternative) treatments?
I have Reiki every week which helps lower my pain levels, also pain killers nothing further (see below).
Is there anything else about yourself that you would like to share?
My treatment has been affected by the fact i also have a heart defect called Tetralogy of Fallot which has had an effect on what treatment I can have and also the level of pain killers I can take.