30 Day Chronic Illness Challenge… Day 12: Dear person who does not have RA… This is the mile in my moccasins.


Dear healthy person… or… maybe… dear person who does not have RA… These are my moccasins.  And this is my mile… please do not mistake MY mile for the mile of everyone with RA.  This is mine.  I’ve heard it said, if you’ve met one person with Aspergers, you’ve met one person with Aspergers.  The same, I venture, can be said about people with  RA.  This is me.  My story, so to speak.

I know that I do best in the morning. This means that I get up at a time that others believe to be obscenely early. It is. Truth be told, it is. I get up about 4 am most days. My dog knows this and plans her pee schedule to coincide. It’s thoughtful of her. I wake and take stock of how I’m feeling. I wiggle my fingers and toes to determine how stiff they are. This helps me to determine what I might be doing in the next couple hours. There are mornings that I decide to not let the dog know I’m awake and go back to sleep for an hour. Most days I get up, hobble to let her out and get on with my morning routine.

Yes, hobble. Most mornings it takes at least half an hour before my ankles are up to actually working correctly. It’s not so much that there is a lot of pain. If I don’t have a flair (think white hot ice picks jammed into joints… and they stay white hot… and they stay with you for DAYS) I can work the kinks out and start to feel human. If I feel human enough, I lace up my tennies and go for a “run”. I’ve been told to not run. I should walk very fast. Walking is good. It doesn’t dink with the joints in my ankles/knees/hips as much.

As much

Now that my big project is over, I am back to being able to actually work at training. I walk three street lights and jog one… walk three jog one. It’s a close as I can get to actually doing the Run-Walk-Run method of Jeff Galloway. I’m currently training to Christmas music (despite it being July) because I’m working my way up to The Santa Hustle on December 20.

get ready for work

work at feeling more human, soak the aches, get ready for work.

High ho, hi ho, it’s off to work I go. I park about 3/4 of a mile from where I work. I park at the farthest point of the lot (yes, deliberately) so I have a chance to try to work more kinks out before work. If I hurt too much, I walk out the sidewalk. If I feel reasonably well I take the 6 or 7 stairs up to the street sidewalk and do a mental happy dance.
If it is wet or icy the walk is a mine field. If I fall (and I’ve fallen a few times) it frequently triggers a flare in the joint I hit. Flair or not, it triggers mortification. I fall more often because between the drugs and the disease I drop things WAY more easily and I trip easier.
Make it to work, sweating like a horse (pigs do not sweat) and fix my coffee and settle into my day.
I work in IT. It means I get to sit which is good.

Stress wreaks havoc on my body. If I have a particularly long or stressful day, I can feel it by the middle of the afternoon. It feels a lot like someone has been beating on me with a wiffle ball bat while I’ve been stretched on “the wrack” (1600-17– torture device). It hurts to breathe, it hurts to move, it hurts to think.

3/4 mile back to the car, sit for a couple minutes because the walk in full backpack is taxing on a good day, and off to home.

a hot bath is heavenly.

I hurt by evening and am very much ready to sleep before 8 pm.
Some nights sleep is elusive.
Some nights I ache so badly that I can’t get comfortable. THESE are the nights I could chuck the cat across the room.

Sprinkle in the fact that I have to remember to try to not touch doorknobs or elevator buttons for fear of catching the cold/flu/whatever of the child of the last hundred people who have touched the whatever. Be careful in public bathrooms, be VERY careful in restaurants. Carry my own wrapped straws because I don’t know who hasn’t washed their hands. Don’t think about seeing counter service places drop the gray bin of silverware onto the floor, stoop down to pick it up and put it back in the gray bin and put the gray bin back on the counter for people to pick their utensils out of. Smile and drink the lemonade of the kids down the street because it matters and don’t think about the insects or germs that might be in it. Watch my cuts and scrapes for infection… wear a hat or a scarf almost everywhere to keep my head (thank you SO much methotrexate for thinning my hair so much that you can see scalp) from getting sun-burned.

Plan your life around monthly infusions, tests and weekly shots in the stomach.
Remember that everyone is fighting their own battles
Push harder than I’m supposed to to make sure that I keep going because I’m terrified that if I slow down I won’t be able to get going again and I don’t know what I will do if I can’t get going again.
Keep on keeping on pushing to the next half marathon because if I keep being able to finish races, I know that I will be able to keep on keeping on.
Keep on listening to Disney music. No, I don’t live in a fantasy world. Far from it. I live in what is very very real, but there are days that just hearing the words in the lyrics reminds me that everyone is in it together and we really should help each other out along the way.

smile, we all have our own crap and yours might be the only smile someone who is feeling worse sees. Yes, I’m a bit on the goofy side, but it keeps life interesting.
30 day RA information challenge

Author: April Wells
Updated July 4, 2015


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