Thursday, September 24, 2015

RA: A Learning Process

I honestly hate the word "No."
It's not necessary to explain the reasons behind my hatred but "No" is a word that encases you in walls, shrinks your world and can make you feel five years old again.
The saddest thing about it for people with rheumatoid arthritis and all those auto-immune diseases is that it is necessary.
I've been dealing with all my diseases since I was a teenager and "No" to a teenage is usually interpreted as "Yes."
When my doctor gave me my first list of "Nos" I was horrified.
I was not to run, ski (snow or water), left heavy things, be stressed.
The list itself was stressful.
Long story short, I did everything but snow ski, not because I didn't hate the chance, but because I hate being cold.
As the decades passed and different diseases reared their ugly heads either one at a time or a mixture of all of them, I learned that "No" could come in handy and eventually embraced it as a friend.
First, I learned I wasn't Superwoman. I did not come from Krypton and I have no special powers. I cannot help every friend I have with every problem they have. That's what their other friends are for.
I have a very small number of friends now that I will do everything in my limited power to help but I also have had to learn to tell them when I don't feel well enough to do anything.
Next, I had to learn that when my doctor prescribed medicine for me that I should take it, and keep taking it unless side effects were bad.
Like most people who have RA or any disease that causes continual pain, I started taking medicines for it. I started with aspirin. Over the years I worked my way through stronger and stronger drugs. I did the reading and there came a time I was afraid to take them. By not taking them I learned an important thing.
They do no good in the bottle. Take them unless the side effects are bad, and if that is the case, work with your doctor to find something that will work.
The next big lesson I learned with my husband's help.
Know your limits.
I used to work 10 and 12 hour days, 10 to 12 days at a time. I would be way beyond tired and got sicker and sicker.
I had to learn to stop.
This was the hardest thing for me. Be reining myself in, I had to admit I had a disease that was only going to get better if I let my body have some time to rest.
I married my husband while I was in a major flare. He saw how no one in my office was going to stop me from working because it benefitted them.
He quickly learned to recognize the signs it was time for me to stop. I fought him until I wrecked a car because I fell asleep driving home.
I began to pay attention to my husband. I still get all gooey inside when I realized how much he loves me. He wanted me around for a long time and was not going to let me do any more damage.
Even now, no matter where we are, he can spot the moment when I need to leave, and we do it.
He calls it "Get home. Get prone."
How can you not love a person who does this for you?
As the decades passed, things got worse, my various diseases began to manifest themselves. My balance left me and I started to fall. I found myself using walls to keep my balance. I use elevators and ramps to keep from falling on stairs, which I did more than once.
In 2012 I tripped over my own foot walking down my own hallway. I fell and broke nine bones in my foot.  
The first time I used a cane I felt everyone was staring at me.  Maybe they did, but it really helped with my balance and later it helped ease the pain in my knees and hips.
I learned to use the aids designed to help me and feel no shame in using them. I have a grab bar in my bathtub. I use a trackball on my computer rather than a mouse.
If I'm traveling and must change planes, I use the wheelchair service offered to get me from gate to gate. It not only helps me get to my gate a little faster, it also helps me conserve energy. If I really feel bad, I'll ask for a wheelchair to meet me at check in and when my plane lands at my destination. You can call your airline before you leave and make arrangements in advance. It will make traveling easier and less stressful.
I asked for, and got, a handicap parking placard for my car. I may not look all that sick but there are days when I am so tired and in so much pain that it is a relief to have paring close by.
The hardest thing I had to learn was to ask for help. Oh man, the first few times I felt such shame at asking someone to put my suitcase in the overhead bin for me. I felt awful when I would ask the cashier at the grocery story if I could have help getting my groceries to my car.
Then, I saw something interesting. When I asked someone for help, they might have a slight smile as they helped. Some would ask if there was anything else they could do.
On planes, someone who saw me get help putting my suitcase up would offer to get it down for me, or even do it without asking.
I always thanked everyone for the help, but I started to think it made them feel good to help, which made me feel better about asking.
I'm sure I have a few more life lessons to learn, but right now, things  are going pretty well.

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