One of the most challenging things about life with RA is how unpredictable and erratic it is. With flares often coming out of nowhere and inflammation hop scotching around the body in apparently random ways, it can be hard to predict what you can do from one day to the next. Feet that are happy today may be replaced by feet that seem to be made of shards of broken glass tomorrow. Hands that work, become swollen and weak overnight, or even from one end of the day to the other.
Sometimes the reason for pissed off body parts is easy to predict. Chances are that too long walk will result in broken glass feet and irritated knees every single time. Then again, some days it won’t. Other times it makes no sense at all and you’d never guess that riding a stationary bike would somehow piss off your hands. (My current situation, and seriously, why???)
The ever-changing nature of the disease makes it really challenging to make and keep plans. Will next Thursday be a good day for shopping with friends? Maybe. Let’s consult the weather, see what else is on the calendar that week, where we are in our medicine cycle, the moon cycle, our menstrual cycle…once you take all that into account, correct for chaos and maybe grab a crystal ball because who knows what will be mad that day? Certainly not someone with RA. It could be a great day for shopping, or it could be a day spent limping, coated in pain remedies. The fact is, it is impossible to tell, even on Wednesday night.
Sadly, few people without RA understand the variable nature of the disease, leading to a whole lot of misunderstanding and judgement. People simply cannot imagine why you are calling to cancel plans with them today when they saw you yesterday on that three-mile hike. They don’t know what it is like to have a mobile body one day and a body frozen with arthritis symptoms the next. So, they think we are flakey, lazy, dramatic, lying…we aren’t. We are simply doing the best we can to live our lives with the world’s worst house guest. One that frequently kicks our ass as we sleep.
It seeps into every aspect of our lives, ruining holidays and weekend plans, making vacation planning one giant question mark. Can we do a walking tour March 21? Let’s grab the crystal ball.
Will we be able bodied that day, or will a wheelchair be necessary? Sadly, the extremes are that big. (Try explaining transient wheelchair use to the able bodied, they really don’t get it.) So we either can the plans all together, or commit to something and hope for the strength to do it, and maybe a low enough pain day to even enjoy it. It makes that 7-day cruise with three back to back at port days look less like a relaxing island-hopping adventure and more like a shark infested obstacle course you may have to navigate completely submersed, without an air tank. In other words, impossible.
Sadly, many of us will see that possible obstacle and give up right there. Not up to facing the challenges and judgement, the stares and shockingly frequent snide comments, we choose to stay at home with our impossible house guest.
Naturally this leads to feelings…anger, sadness, feeling left out and defeated, feelings we spend way too much time with due to the nature of RA.
As I prepare for a much needed and deserved 7-day island hopping adventure myself, I am planning for good days and bad. Trying to build in rest days and telling myself I will be okay when I, undoubtedly must cancel plans because it turns out that rest day wasn’t enough. Looking at those back to back at ports and praying for three good days in a row (HA!), so I can explore new places. Making arrangements for mobility devices to be available in case I need them. Stealing myself for the weird looks and inquiries from people who saw me walking yesterday and in a wheelchair today. Hoping the loved ones I am traveling with understand my ever changing limits as well as I think they do. Knowing that the worst that can happen is I will have to spend a pain filled day laying on a beach or near the pool. Compared to some of the days my grouchy houseguest and I have spent together, that truly will be paradise.
How do you deal with the unpredictable nature of RA? Does it stop you from making plans, or do you plan and hope for the best?
I am new to the world of chronic illness. Neurological Degeneration and everyday I have to wake up and take stock of my health. Learning to deal with not being able to plan ahead more than a few hours, if I’m lucky, has been one of my hardest obstacles in my journey. Thank you for a great article!
It can be so frustrating and disappointing! I used to feel crushed and guilty every time I had to say no, that gets easier for some things, little things, but I’m not sure I’ll ever be okay with canceling the big stuff, those are the days that hurt the most.