Sometimes, I don’t exactly know how I keep on moving…but I do. Maybe it’s because I know (from experience) that quite often, laying in bed and getting depressed about the pain is an even worse alternative. (Beyond those instances when bed rest is both necessary and helpful, of course.) What I’m talking about are those days–“average” days in fact, for many of us who live with autoimmune disorders–when the only way to cope is to keep on moving…but when every single movement is the most painful thing ever.
I’m once again in a period where the feelings (physical and emotional) mentioned above are becoming more frequent. I take comfort in many things, such of the outpouring of support that I receive on Facebook and Twitter whenever I post a quick update about how I’m feeling.
Earlier today, I had a major flare that started just a few minutes before a student was to arrive for an afternoon tutoring class. Even though looking back I now know that there were many more options available, at the time I felt like I only had a couple of choices. I could crawl into bed and cancel my class. Or, I continue doing what I could.
I chose the latter, for three main reasons.
1. When I start working with new students, I always briefly describe the condition with which I live, and the challenges that it can present at times. I tell them that sometimes they might see me struggling a little more than usual to move around…or that it could be the case that they never notice anything at all. Communicating ahead of time makes it a little bit easier on days like today, when my pain and symptoms are quite noticeable. Upon their arrival, I tell them that I’ve having one of those episodes. Without further explanation, they understand what’s going on. We then start, and continue with our lesson.
2. On the positive side, even though these flares are becoming more frequent, I’m still only experiencing them about every other day…and the absolute “worst” part lasts only about an hour. (Oh, but what an hour that is!) I figure that if I can distract myself as much as possible during the first half-hour, then I can actually cruise (in the metaphorical sense of course, because there’s absolutely nothing “smooth” about my joints during this time) through the remaining half-hour. This is a theory that I once again validated earlier today.
3. Last but not least, if I’m going to be in pain, I might as well be doing something that I enjoy.
And this, I guess (answering my question at the start of the post) is why I keep on moving, especially (and most importantly) during those moments when movement seems to be fading into the realm of the impossible.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
I hope that by sharing the good days I am experiencing right now that I can be a source of hope for people who are experiencing rough days rather than appear to be bragging that I am well right now and you aren’t. However, the dilemma in my mind always goes on – should only the bad days be shared? Does sharing the bad days connect us more than sharing the good days?
One of the first questions that a person asks when we meet someone with a chronic condition is, “What do the doctors say?” You see, when we come across someone who is sick or in pain, we assume the medical community must have a handle on their condition.
Unfortunately, this often leads to thinking that they are still suffering, because they must not be doing what their doctor is telling them to do. After all, modern medicine has come a long way! What’s more, the doctors must have something that can take away the symptoms. Otherwise, the only other explanation is that this person must not be trying very hard to get well!
The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit.
Rheumatoid Arthritis: is a chronic, systemic disease; is an auto-immune disease; attacks the body’s tissues; causes chronic pain, weakness & inflammation; can cause severe disability; can cause permanent joint & organ damage; does not have a cure; affects 1.3 million Americans and an estimated 1 to 2% of the population worldwide; does not have a confirmed cause; affects 2-3 times more women than men; can occur at any age, but generally age 30-60; shortens life span; can cause deaths from RA-related causes; is consistent only in its inconsistency in onset, severity and response to therapies between patients.
AKA: Gimp-opotomus, BamBri (usually joined with “get up Bambri!” said like Bambi’s dad in the Disney film…..my dad thinks he’s so clever), Lefty, and plenty more.
Atlanta, Georgia, United States.
How long have you lived with RA?
Probably for 2 years or more. At least that’s when I noticed that something just wasn’t right. I just got diagnosed in March of this year tho.
What advice would you give to someone who has just been diagnosed with RA?
Finding a supportive group of people who honestly care about you has been very important for me. I also think it’s a good idea to talk to your family and try to have them understand why you need so much help and why you’re always so tired. Your family can be the one you were born into but it can also be the one you choose to be part of. I was lucky enough to be born into a very large family but I am also very grateful for my family of friends. Having so many people who really want to help makes it a lot easier to beat this stupid frustrating painful unfair RA.
Do you use any mobility aids?
So far I’ve only needed a knee brace since starting treatment. I used a walker for a few months before I was diagnosed. Well it’s more I’m too stubborn to use it when I need it.
How has living with RA helped to improve your life?
It forced me to move back home with my family which got me out of a bad relationship. It’s also made me realize just how strong my inner superhero is even if my RA-self is falling apart.
Do you have any visible signs of RA?
Slight deformities of my wrists and fingers. My elbows and knees no longer straighten so my posture is pretty bad.
Can you please describe some of your favorite coping strategies for living with RA?
Wow…umm. Mostly I try to cry it out. I’ve always been one to bottle up my emotions and be strong and not let things bother me but then I would tend to have major breakdowns. I’ve found that crying it out helps me. I still hide in the shower to do it tho. I’ve had enough pity. Not to mention when I cry then my mom cries and then I cry because I made her cry and it just becomes one big mess. I also like to get lost in a really good book. I like fantasy books because I’d rather be thinking about flying on a dragon than thinking “how long can I hold it before I struggle to get up and go bathroom?”
Can you please describe your current medical (traditional and alternative) treatments?
10mg Prednisone, Methotrexate, Plaquenil, and Folic Acid. I go to physical therapy twice a week. I see my chiropractor at least once a week and I get a therapeutic massage at least once a month. Chiropractic care and massage therapy have been wonderful tools to help me.
Is there anything else about yourself that you would like to share?
I have nine siblings. They drive me crazy but I love them all. I am still learning how to define this new me but so far I kind of like being the left-handed, quick-witted, adorably quirky misfit that also just happens to be living with RA.