After years of flare after flare – some lasting months on end – I’d managed to stay flare free from my birthday (July 19th) until today. I had one day a couple weeks ago where I woke up in a lot of pain and thought I was flaring but the pain subsided by afternoon. This, though…this feels awful. I have no idea how I lived like this every day.
Let me explain this, because a lot of people miss this about rheumatoid arthritis. It’s not joint pain. The joint pain is a part of it and, for the most part, never really goes away. With a flare, it gets worse but, when you’re not in a flare, it’s not necessarily gone. Lots of things still hurt. With RA and flares also come the glorious gifts of:
- chronic fatigue
- breathing problems and asthma triggers
- leg cramps
- weight loss
- skin rashes
- dry eyes, to the point of 3x a day medicated drops or constant pain
- heart problems and an increased risk of heart attack or stroke
- Numbness in extremities because the joint inflammation is pressing on nerves
Basically, I feel like I’ve been hit by a car – and I can say that because I’ve actually been hit by a car. It’s very similar, often times worse.
At some point in the middle of the night I, a person who is always freezing, kicked off all of my covers in frustration. Then, I realized I was sweating. Then, I immediately thought ‘FUCK! No!’, because I knew – I had a fever, and was going to wake up in extreme pain. And, I did. My first flare since July 19th – 84 glorious days. It’s the longest I’ve gone without a flare when not pregnant since 2016.
I’m frustrated. Because my life is great right now and why? Just…why?
Then a friend of mine said ‘probably weather related but could be released build up of stress’. I’d already made the connection between my stressful ass life and my RA symptoms. It’s not at all by chance that, now that I no longer feel like I’m walking on eggshells and fighting to be heard and living in anxiety that my RA has calmed down. It’s been proven by endless medical studies that stress and anxiety cause your body to go into flight or fight and, when this happens on a continuing basis, it goes into what’s called a ‘sustained sympathetic tone’ – you basically get stuck there. It can cause autoimmune diseases, not just make them worse. So when my life shifted and the flares went away, I wasn’t surprised in the least. Science solidly backs up that it was to be expected.
So why now?
Maybe it’s the weather. Maybe it’s because I have half a decade inside of me to process and emotionally release. Maybe it’s because last weekend was unexpectedly stressful AF and screwed up my schedule all the way until this weekend and my body just said enough is enough. Maybe it’s my body telling me I need to assert my boundaries better and put myself first. Maybe it’s my body reminding me that grown adults can take care of themselves and figure things out like I have, always, my entire adult life. Maybe I just need to cry more – release all the feels, because the shower cries are fierce but short.
What I do know is this: It’s unbelievably empowering to be in a place where my body speaks and I can listen. I’m encouraged to listen.
And I’m listening.
Thank you for sharing this Airmid. (I love your name!) I am also, or have been, hippie, geeky, rock chickie, and my life changed when a whole lot of bad stress and a virus took me down and has lasted as a ‘sustained sympathetic tone’, as you describe…. mornings are baaaad for me, I pick up thru the day. When I have good days I feel very suspicious and fearful for it is not my norm, as much as I want it to be!! It feels good to hear you talk for I know you would understand, and it seems hard t find understanding. I don’t listen to my body enough/at all, I run away (in my head) from it and burn out further, but hey, I fill it with arty stuff, colour, pattern, words, poetry…
Sending you love and freedom from your flare-ups!!