Living with a chronic pain takes a toll on both the body and the mind, something I am only now learning to understand. Things that are important, things that fill your soul and make you feel normal, get dismissed as unnecessary because they take too much effort or they've become physically impossible.
And this time of year, the things I find myself dismissing are things I used to take for granted. Like putting up my Christmas tree and setting out meaningful decorations. Baking our family’s traditional cookies, sending holiday notes and even removing the snow from the front steps.
Suck it up. Push yourself. It's not that bad. You can rest later. Other people have it much worse, and they still do it all. These are just a few of the phrases I've heard myself repeat in my head over the past few weeks as I prepare for my first Christmas after being diagnosed with Rheumatoid Arthritis (RA) and living with chronic pain.
As I wrote last time, the better term is Rheumatoid Disease (RD) as arthritis is only one of the manifestations. RD is an autoimmune disease which as I currently understand it, means my immune system doesn't work correctly. Rather than supporting me and attacking unhealthy bacteria and viruses, my immune system is attacking me, and it starts by attacking the joints, thus the resulting arthritis. Unfortunately, it also strikes other parts of our bodies, including our organs. Heart, lungs, kidneys, liver.
You get the idea.
And if that isn't enough, there is the pain factor.
Mine has been nearly constant for months, impacting my sleep, my ability to leave the house and yes, preparing for Christmas. For a long time, I listened to that crazy voice inside my head and sucked it up, pretending everything was fine. I really dislike complainers and I certainly didn’t want to be one. I even had myself convinced (for a while) that it wasn’t really that bad. And the more I pushed myself, the worse the pain became. Everyone experiences pain differently. There is no one-size-fits-all answer that will work for the masses. We're all finding our own way, and one thing is clear.
Chronic Pain changes us. All of us.
Especially untreated, or under-treated pain.
The impact of living with chronic pain has affected me far more than I realized. Both physically and emotionally. I'm usually pretty optimistic and can find a silver lining in just about everything, but you would never believe that to be true if you had been a fly on my wall last night.
In my first post on this topic, Abandoning Perfect, I ended by sharing I'd decided to try the recommended treatment which is a chemotherapeutic drug. I take this medication once a week at bedtime to avoid as many side-effects as I can. Yesterday, the day after taking my third dose, I experienced my worst side-effects yet.
The physical effects were with me during the day. The mental impact showed up as I tried, unsuccessfully, to fall asleep last night.
So, instead of falling asleep, I sat on my toilet sobbing and feeling sorry for myself and cursing my Christmas Grinch. And then, when I realized the pain of getting up was far worse than the pain of staying put, my sobbing turned to wailing as I cried out in anguish,
This is no way to live. I want my life back!
And it's true, living one's life from a toilet seat is no way to live, it's just a place to visit and let go of all the bottled up shit.
Today has been a better day. Not great, but better than yesterday.
Christmas is only a few days away, and just like me, it will be different this year. I'll miss seeing my beautiful tree and decorations, but dragging it out from under the stairs was challenging on a good day for the old me and not even possible for this year's version of me. Holiday notes have never been consistent and let's be honest; I was the only one who ate the Russian teacakes and frosted sugar cookies anyway.
And as far as that snow on my steps goes; let's just consider it part of my holiday decor this year.
How has Rheumatoid Arthritis impacted your holiday preparations?