Take Each Hour As it Comes
by Bob Hinsey
I am a 57 yr old male who was diagnosed with severe RA about 15 yrs ago. First it was Lyme's disease, then it was something else, and finally the diagnosis came in...rheumatoid arthritis. Hell, at the time I didn't even know how to spell this.
The first doc told me to prepare for being in a wheel chair in 5 years ( I was 42), another doc told me I had 18 months to live (that was 14 years ago), yet another doc said (he was Chinese)..."look at hand, how you suppose to work...bad case of RA"?
You take it as it comes, and you make adjustments in your life.
Over the years and through the clinics, trials, doctors and tribulations here's what I have learned.
A) Very little is known about this dreaded disease.
B) Not much research is happening to find a solution/cure. The medical community depends on treating with drugs that are sometimes worse then the RA condition itself.
C) Family and friends are clueless as to how this disease actually affects you during your day. Years ago I was actually told by my mother on a visit to her home, "buck up and get over it". None of them (so called friends AND family) understand why I am cranky most of the time. Let them live with this constant full body pain, huh? I can't think of one of them who could actually deal with the massive pain that I suffer every day.
D) Things that you once took for granted are no longer easy to do. Just holding a screw driver and trying to screw a screw into a piece of wood nearly brings me to my knees. Getting out of bed, dressing myself and getting cleaned up for the day has become a major challenge. Try to button a button on your shirt when your fingers don't work or wash your hair in the shower when you can't raise your arms above your shoulders, or trim your toe nails when you can't even hold the nail cutter with your fingers.
I have lost most of my teeth (yes compliments of RA), therefore eating/chewing a fine meal is a huge challenge. My eye sight is tanking thanks to the RA/Prednisone combination. My heart has a mind of it's own now (meds). My stomach screams at me for not chewing my food properly and my bowels,
well, they agree with my stomach.
So, how do I cope? I take one hour at a time. It's all about making concessions. I have learned how to walk different so the pain in my feet, knees and hips isn't so bad. It's sort of a thing where I walk on the sides of my feet when the pain is bad. Sounds crazy, but it helps.
Each hour is a challenge. When greeted by the cheery/happy go lucky people, I manage a smile and a joke, all the while I am in full body pain and about to scream at the top of my lungs, "Screw you, your plastic smile and your petty problems!"
I watch my diet, take my meds and try for the life of me to maintain a positive attitude each day. Going to bed is a relief for me until the pain starts again, so sleep is at a premium and I get little of that too. 15 minutes on my right side, 10 minutes on my left side...back and forth, back and forth...all...night...long...
This disease forces you to focus on one hour at a time.
And that is probably a good thing. We rheumatoid arthritics are literally forced to stop and 'smell the roses'. The fast pace of life disappears, simple things become events to conquer, attitudes get calibrated and we actually lose friends and family over this. I know I have. That part really use to bother me, but it doesn't anymore. My take is, if these people who were so 'close' to me can't try to understand my situation, when I have always been there for them, then to hell with them. It's actually a good thing.
I know it might sound strange but I have always said this disease has taught me so much about myself, my motivations, my limitations.
I have also become a fine actor. People come to me with so many petty problems and issues and I always try to be there for them. Sometimes it's like watching a movie whereby people are so wrapped up in their illusional little life crap and can't even remember how to ask..."Hey, how are YOU"?
Anyway, I didn't mean to write a book here. I just found this site and thought I would answer that question of coping.
For me, it's one hour at a time.
Thanks for the venue.