Dealing with the Unpredictability of RA
Unpredictability. If there was one word to describe living with RA, it would be unpredictability.
Like a lazy porcupine in a balloon store, you never know exactly what’s going to happen, and you don’t know when it will go down - you just know that it’s not going to be good. That’s life with RA and that’s what happened to me this past week.
Trying to maintain a routine
I woke up a few days ago, like I usually do, around 9, and went into my routine. Same every day – go downstairs, feed the cats, microwave my frittata, and eat my yogurt and cottage cheese. Yeah, it’s not as good as pancakes and bacon but it keeps my RA in check, so I make the flavor sacrifice.
I grabbed my robe and flung it up in the air - because RA has made my shoulders just about as useless as wheels on a hovercraft, any time I put on anything with sleeves I have to toss it over my head like a pisan in an old school pizza joint to get my arms in without help. Unfortunately, as I made the move, I felt that unwelcome and telltale lightning strike of pain that indicates my shoulder had somehow gotten jammed during the night.
RA unpredictability had reared its ugly head. Why? Well, just like a blurry photo of the Loch Ness Monster there’s no telling what really happened and all we are left with is questions. And one weird guy who insists it’s real. Me.
How can we manage the unpredictability?
Coming to terms with the volatility of rheumatoid arthritis and chronic illness is probably the thing that takes the longest for those who are first diagnosed. It can be years before finding a way to be able to wrap your head around not knowing what the day may hold and even three-decade veterans like myself can still find it overwhelming, especially when you have something planned and have to cancel – it can be mentally draining.
And when you throw in the isolation, stress, and worry of today’s COVID-influenced world, it can be soul-crushing. So, what do we do? How do we handle the instability of rheumatoid arthritis and its mercurial whims?
1. First thing's first: Have a backup plan!
First and most important, I’ve found it can be beneficial to have a backup plan. A backup plan for what? Well, everything. Take a few minutes to consider what a bad day might look like for you, individually, and make a plan for what you’ll do in case that happens. Need to work? Then have a plan in case you are stuck in bed. Have to make a doctor’s appointment? Make sure you are set up for tele-health. Having a plan of what you might do if a bad day hits can not only help you prepare for the physical discomfort, but also to take some of the mental sting out of missing out on something - sometimes the hardest part to overcome.
Let go of the fear of missing out
Second, speaking of the mental aspect, you have to find a way to overcome the disappointment and despair that comes along with missing out on things. I know, I know. I might as well be telling you to get a gold medal at the uneven bars or come in first in your local triathlon – it sounds impossible, right? Well, it’s not, but it’s for sure not easy. Dealing with the mental fallout of unpredictability is actually extremely difficult. It took me years to be able to let things roll off my back but the main way that I do that is by telling myself that no matter what I’m missing out on, there will always be another opportunity.
If life has taught me anything it’s that the unpredictability of life works both ways – good and bad. Yes, you never know what chronic illness has in store for you, but also, you never know what’s around the next corner in life. It could be love, or a dream job, or the opportunity of a lifetime. If RA keeps you home for a get-together it might be just the night where you meet someone online who ends up being your true love (if you believe in that sort of thing).
I know it’s a little bit Pollyanna, a little bit rose-colored glasses – especially for someone who lives with horrendous chronic illness, but I have seen it happen too many times to disbelieve it. As long as you are open to it, there is almost always another opportunity in your future, so missing out isn’t the end of the world (even if it feels like it at that moment).
Embrace your resilience
Finally, the last tip I can give you is to say that learning how to live with unpredictability and being ready for anything can give you a talent that many other people lack – the ability to react well in a crisis and deal with problems in a rational and effective manner. RA has taught me much, and I have learned a lot about myself over the years due to my illness but one of the things that I am the most grateful for is the ability to keep my composure and act rationally in chaotic situations.
This stems directly from dealing with the unpredictability of my chronic illness. When I was younger and first diagnosed, I couldn’t solve my way out of an emergency paper bag. I’d pretty much just run around with my hands over my head screaming and freaking out. Err, metaphorically? Now, though, I am like the MacGyver of emergency-event-related chaos. Using a paper clip (my brain) and a stick of gum (my wits), I will jury-rig a solution and a path forward. Keeping a cool head when emergent situations arise is something I learned, and you will also.
I hope this helps those of you who are struggling with the unpredictability of rheumatoid arthritis. I can’t promise you will ever totally get used to it, but I can promise it will get easier and you might learn a few new tricks along the way. Talk soon.
Did you have difficulty receiving a RA diagnosis?