This is the ninth of ten things I’d like to go back and tell my newly diagnosed self about living with RA.
There’s a saying here in Texas that if you don’t like the weather, wait for an hour because it will change. RA is a lot like our weather in that regard. There have been days where I woke up feeling fine but was curled up under the covers by the afternoon. The reverse has also been true. I woke up feeling like I couldn’t crawl out of bed, but was out running errands later in the day.
I sent out a Twitter question about what people felt guilty about having RA and one of the most frequent responses had to do with having to change plans at the last minute because of RA. That’s one of the ways that RA affects us beyond our physical well-being. It can degrade our relationships – not only with friends and family but with our work relationships as well.
Making plans with RA can be tough
There’s no question that the quickly changing nature of the disease can make it difficult to make plans, but putting your life on hold isn’t the answer either. At a time when you’re in the midst of a flare it’s easy to look at your calendar and start cancelling things. However, if you take care of today – get rest, do some gentle exercises, be good on your diet – it’s more than possible that you’ll be able to keep those future engagements.
Stay in the present
A major part of taking one day at a time is not to worry so much about what could happen that we can’t enjoy the present. When I was first diagnosed, I got hung up on the disability statistics of people with RA. It didn’t help that within a few weeks of my diagnosis I was having my right hip replaced. And a few weeks after that, my left shoulder needed replacement surgery. At that rate, it was easy to see myself in a wheelchair in a short amount of time. But that didn’t happen. Those surgeries, along with my later knee replacement and spinal fusion surgeries, greatly improved my life and have helped me remain active and productive.
But having RA means that I’ve had to admit that I can’t do everything I used to. I’ve learned that I need to be realistic which is hard when I’ve spent so many years believing that I was invincible. As an example, it exhausts me to run errands every day. It’s easier for me to group them together on a day that I know I need to be out anyway, such as for a doctor’s appointment. And if that day comes and I don’t feel I can accomplish everything – or even anything – I reschedule and do what I need to do for myself that day.
I still plan. I still look forward to things. I still (over)schedule myself. I just write that schedule in pencil knowing that on any given day, things may change.