For years, I would have adamantly said ‘no’. Less than 24 hours ago, though, I caught myself saying ‘yes’.
Yesterday afternoon, right before my physical therapy session, I went to get a haircut. The lady who cut my hair yesterday was the same lady who’s been cutting my hair since 2003…longer than I’ve (officially) been living with rheumatoid arthritis. (My first symptoms started a few years earlier, although I didn’t know it at the time…I used to just chalk up the strange foot pains and knee pains to “too much walking.”)
Now this lady who cuts my hair, if you were to ask her what rheumatoid arthritis is, she’d probably shrug her shoulders, and say she doesn’t know. If you were to connect the pieces for her, though, and say that rheumatoid arthritis is the illness that I–her longtime customer–live with, then all of a sudden she’d know even more than she could have imagined. She’s tell you about the rough mornings, the never-ending pain, how it can affect people of any age, the constant cycle from unaided walking to canes to crutches and back again, the expensive medicines that can sometimes cause severe side effects, and along those same lines (she’s a hairdresser, don’t forget), the hair loss.
On more than once occasion, as much as I wanted to deny it myself, she was the one who would force me to accept that my hair was indeed thinning out, falling out, changing colors, or all of the above.
But the main point of this blog post isn’t about hair loss, something that has evoked so many different emotions when I’ve experienced it in the past. At the moment, having been off medicines for almost a year now, my hair is back to it’s normal, healthy self. What I’m leading up to was the small-chat conversation that took place yesterday, when I was getting my hair cut.
My hairdresser, as usual, asked how I was doing, and inquired into my current state of health. I told her that in general I was doing okay, but that for the past couple of weeks my mornings had been particularly rough. I mentioned that I was going to physical therapy right after she finished cutting my hair, and then I showed her my hands, and we both commented on how the knuckles were just red enough for the color to be slightly noticeable. (Just a dash of rouge, we might had said, had we been referring to the makeup catalogs that lay on the counter in front of us.)
Then, as this ‘medical’ part of our conversation came to a close, I summed it up with the following: “The pain never ends, no matter how good I might look on the outside…but at a certain point, after so many years, I just decided to get used to it all, and move on with my life.”
And there I had it. After years and years of telling myself that I would *never* get used to this pain, even once having discussed as much with my psychologist a couple of years ago, if such a thing (getting used to the pain) was even possible (psychologist: yes, me: no), here I was, for the first time that I could recall, actually saying that I had indeed gotten used to the pain.
I started to look back at some of my most recent flares, and focused on the most recent one, which took place at two o’clock in the morning this past Saturday. While I once again felt like I had been pushed up next to a bottomless abyss, and was only seconds away from falling into I don’t-know-what (I’m not even trying to be ‘dramatic’ with the words that I use to describe what it’s like to be in the midst of a major flare), I started to realize how ‘routine’ all of this actually was.
The constant pain. The flares out of seemingly nowhere. The heat pack or electrical pads that are wrapped around the worst of the worst joints (because there are never enough to go around to all of the joints.) My mind, struggling to remain balanced, and trying to figure out what is within its control, as my body goes haywire. My breathing, which becomes much more rapid, only complicating all of the issues that are at hand. The vaporizer, that has been turned on by my partner, without me even realizing as much. There are wisps of lavender oil in the air, and if I try to grab on to them and slow down my breathing, things will get better.
That’s exactly what I do…I sometimes don’t know what to hold on to, in order to try to keep some sense of ‘sanity’ (or to prevent a sense of ‘insanity’ from taking over), but grabbing on to my breath always seems to work. Then, trying to figure out how long I’ve actually been in this flare…has it been 5 minutes, or 15 minutes? In the back of my mind, I remind myself that the absolute worse usually lasts about half and hour…sometimes even three-quarters of an hour..usually never longer than an hour. Compare what I’ve gotten through with what I still need to get through, and it might seem like too much…but if I just keep repeating what I’ve done the past few minutes, over and over and over and over again, I know I’ll be okay.
And then that split second finally arrives, when I can feel my flare breaking. The pain is still quite intense, the only difference being that it’s not getting worse by the second…and while it will hover here for another minute or two, I know that I’ve once again gotten through the worst, that the pain will soon let up. (This is indeed what happens, only a few seconds later.) And then the ‘residual’ pain, from joints which have just taken one of the worst thrashings in their life. (And no matter how many times this happens, it still qualifies as “one of the worst.”)
All of this that I describe above, and much more: I’m used to this.
I don’t write these words out of sadness, or self-pity. I write them from a new-found awareness that I am indeed used to the chronic pain that flares at regular intervals…and that by admitting as much, the prospect of getting through another flare just seems a little more easy, a little more possible. I may not be able to remember these thoughts, these declarations of self-strength, next time I’m in the midst of a flare…but I’m certainly going to make it my goal to try to do so.
No matter how bad it might get at times, the truth of the matter is, I am used to this.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!