Rheumatoid Arthritis Guy is extremely flexible. Since I live with rheumatoid arthritis, this can be both ironic (to me) and misleading (to others).On one hand, I have joints that stiffen up and snap on a regular basis. On the other hand, my body has always exhibited signs of super elasticity.
My nickname at my last yoga studio was “rubber man”. My nickname at my current yoga studio is “bubble gum”.
I try to not draw too much attention to my flexibility, but when I throw my knee over my shoulder or do a forward bend that might make some Cirque du Soleil performers jealous, I guess others do tend to notice. (And I’m sure there is at least one person in the room who thinks: There is absolutely no way he can have arthritis!)
My first rheumatologist always asked me to bend forward and touch me toes, as part of my routine physical exam. I always thought this was sort of silly, as even during my worst flare days I can still place my hands palm down on the floor in front of me. No matter how much I told her that this should not be used to evaluate my current state, I don’t think she ever really listened to me. (She always thought that I might have ankylosing spondylitis, but after every part of my body except my spine showed signs of inflammation, she finally dropped that theory once and for all.)
While my physical flexibility continues to be a great benefit, it hasn’t been nearly as important as the lifestyle flexibility that I have learned to incorporate into my days. At times it feels like my choices are limited to either/or. I am learning, however, that there are many other options in between. By exploring these alternatives, I can often find a healthy and enjoyable balance between “doing too much” and “doing nothing at all”.
In general, I am a very punctual person. I dial into conference calls two minutes before the meeting start time. I get to yoga class ten minutes early so that I may set up my mat and do some light stretching. I arrive at my doctors appointments five minutes before the hour. And according to the type of social event I am attending, I arrive either at the appointed time or during the range of what is accepted as fashionable lateness.
Now that I live with rheumatoid arthritis, rarely does my punctuality reach the precision of minutes. If I hit the target withing half and hour to an hour, I am happy. (Although I do make an exception for my medical appointments, as I don’t want to lose a minute of the time that has been set aside for me.)
There is a direct relation between how I am doing physically, and how long it takes me to get ready to leave the house. (Rheumatoid Arthritis 101.)
For me, it’s not out of the ordinary to spend twenty minutes putting on my ankle braces and shoes. (Even at that, I still have to take a short break between each of the four items, six if we’re counting socks.) Almost half an hour, and we’re only talking about my feet!
I now set aside an hour to get ready, for what used to take me ten minutes. (Depending upon my current state of dress, I might even have to give myself an hour and a half to get ready.) I like to try to get in at least a thirty minute nap before I leave the house. Add in transportation time, and this means that I often have to start getting ready at least two hours early before any appointment.
Arriving on time can sometimes be a challenge. (It can also be an additional stress on top of what I already have to deal with.) Needless to say, I have learned the importance of allowing myself to be late. Although I don’t think I take it to an extreme of “irresponsibility”, it certainly has made things a little easier.
Of course, different types of events require different lead times in which I need to notify the person that I am going to be late. But ,I have generally found the person on the other end to be quite accommodating (even more accommodating that I expected).
I’ve even had dinner plans postponed by more than two hours. One evening I had some ankle stiffness that wouldn’t go away. I didn’t want to cancel dinner plans, so phone calls went out every half hour between friends and the restaurant. Things eventually got better, and a couple of hours later we were all sitting together. This was much nicer than just canceling outright (I was visiting from out of town, so rescheduling for another day was not a possibility). My friends actually confessed to me that the unscheduled delay actually ended up working in their benefit, as well.
While we live in a culture that praises punctuality almost down to the second, it may seem odd to try to introduce variable tardiness into the equation. But by doing so when necessary, it has made my days easier and has allowed me to continue to take part in things I enjoy – even though I just might be a little bit late in doing so.
Change of Plans
Plans have been made days ahead of time, but the morning of the event I wake up with a horrible flare. From experience, I know that things are not going to get any better as the day progresses. What should I do? Sometimes, it seems easiest to just call and cancel. Although in the end, this really isn’t that much fun.
Once, I promised a group of friends that I would invite them to my house and cook dinner. As the date neared, my grand dinner menu continued to shrink both in size and complexity. The evening before I finally accepted that I wasn’t even going to be able to prepare microwave popcorn, much less anything resembling a dinner.
My first reaction was to cancel, but then I thought: Why don’t we go to a restaurant instead? I reserved a table at a nice restaurant, and then called my friends to let them know about the change in plans. The evening ended up being a blast, and I still look back at it with fond memories.
Sometimes I do the exact opposite. Plans to go to to a favorite neighborhood restaurant turn into take-out and dinner at home. Things changed, but the highlight of the evening remained the same: good Thai food (my absolute favorite).
I am also learning that sometimes a change in plan means cutting out Activity A in order to be able to do Activity B. By prioritizing, I am able to pick and choose those things that will be most meaningful, and accomplish those. There are many days where, if I leave everything on my plate, I end up getting through none of it. Less truly is more.
By bringing more flexibility into my life, I am realizing that I can overcome some of what I originally perceived to be restrictions of my life with rheumatoid arthritis. The limitations of fatigue used to be a hard wall that surrounded my days; now they have become blurry boundaries. Sure, they are still there – but as long as I don’t bump up against them so often, they do seem to begin to fade a little into the background.
One doctor told me that my (physical) hyper flexibility was actually a symptom of my rheumatoid arthritis. Has anyone heard this before? (I have had a lot of this flexibility since I was a child.)
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!