Learning patience when living with autoimmune disorders.

I don't want pity. I actually will say something not nice if I receive any - sarcasm will erupt. This is more for informational as autoimmune disorders are a hidden illness. People have a hard time understanding what they cannot always see, I know - it used to be me when my dad was first diagnosed. I didn't fully understand why one day he could be fine and the next day, still looked fine, but unable to move. Now I do. 

I need to learn patience with myself.

I have just a few months left in my 40s and before I turn 50, that is a goal- patience with myself. Kinda ironic, I know - putting a timeline on patience. Welcome to my world.

Picture looks better than my hand looks in person,
that swelling around the joints in my hand is synovial fluid,
there's also redness from the imflammation -
This is what Rheumatoid looks like. 
It is a world of living with autoimmune disorders and how they wreck havoc on a body, a mind, and dammit, sometimes my spirit.

I need to learn to slow down and remember that while my mind says go, I have to allow my body a chance to heal and prepare to move.

Getting up in the morning is probably one of the hardest moments during my day with Rheumatoid - it is when my body is frozen in place, stiff. I tend to forget that and force myself to move faster than I should. Two days ago I was reminded why that is a mistake.

I had already been flaring for a few days when on that morning I decided to wake up with a long and hard stretch. Having a dog lying next to me all night was the motivation. Half asleep I pushed for the stretch only to hear a loud pop in my back - then, almost immediately, came the searing pain down my hips into my legs. "Oops"

No time for pain, I crawled out of bed and made it through my day...my weekend. There's been some swearing - ok, a lot of swearing, a tremendous amount. And, yes, that does help - kinda.

Patience, I need to learn patience with myself.  I am just not sure how to go about that. It is so frustrating not being able to do the things I used to be able to do. Lawncare has been a nightmare since the boys moved away. I now pay someone to mow the lawn and it never fails that when the lawn needs to be cut it is the week prior to being paid, a time when finances are running low.

The hedges in my driveway are out of control. All the rain we've had has sealed that fate. When the summer started I purchased new electric shears thinking I would be able just to attack them with little effort. I learned rather quickly the vibrations from those shears is a type of torture I cannot explain.  I did pay a young man to clip them early on in the summer. My wallet cannot handle all these lawn care costs. My solution to this problem has been to purchase a good pair of clippers that I keep in the car. Every time I pull in I clip as much as my hands can possibly handle, which isn't a lot, but I am finally making a dent. Then I walk into my house...swearing under my breath.

Pain I can handle. I've dealt with it most of my life. It is the mental stress of having a disability which takes the greater toll. Little things like stepping over that phone book on my front steps because I know it will hurt too much to bend and pick it up - that pisses me off. I get frustrated with knowing I am just 49 and that is my reality.

I have friends who know exactly what I am talking about. They know the fatigue that can hit like a brick wall. They know how to plan out a day and save up energy for when you will most need it, as energy in an autoimmune body is a rare commodity.

There's no warning when you come down with these illnesses. It is like one day you're moving along at high speed and then all of a sudden you can't get the car out of park. The transmission dropped but the car still looks fine.

I get frustrated trying to explain what Rheumatoid is - people hear arthritis and automatically think of it as wear and tear of the joints and compare it to their knee or finger. I wish it was like that. It is synovial fluid building up in the joints, basically, it feels like the joint is being pulled apart. It is symmetrical, meaning it is on both sides of your body- both hands, both ankles, both shoulders...etc..etc.  It is your own immune system attacking the joints and organs in your body.  With it comes a host of symptoms beyond the excruciating pain. There's far more to it, but that's my easy "go to" explanation. I also have "go to" explanations for Sjogrens and Raynauds, as most people who have an autoimmune disorder know, we have multiple ones.

For instance, as I write this, both of my ankles are aching, knees are throbbing, fingers are stiff, my neck is not cooperating and my hands look like baseball mitts. When my flare subsides, those hands will get wrinkled looking - with a raisin texture. Attractive, huh?

My spirit is a strong one but last week took a toll and my patience with myself is about at zero- hence the tremendous amount of swearing.

Right now I am lying in bed looking out to my living room floor and feeling antsy. Bailey, my young Lab, has been bored and his boredom has played out by shredding paper products and other things that have been in his reach. He has deposited them all on that floor. So now I must plan on how to attack that. Do I risk sweeping it up with a bad back? Or, do I sit in the middle of the floor with a garbage bag and scoot across as I pick it all up? Decisions, decisions.

Pain - I can handle
Mind - well, mine is always working on plans of attack -so, I'm good there.
Spirit - that is what I get low on and why I need to learn patience with myself.

If you know anyone with an autoimmune disorder, cut them some slack. When they say they are tired, understand that it is more than what a short nap can fix. If they say they have some pain, know that the pain is overwhelming enough that they even mentioned it. Don't do everything for them, ask what you can do to help.  Visit with them. Laugh with them. Swear with them. Be present in their world, especially when they try to shut the door on you.

And to all my fellow friends battling one (or more) of these debilitating conditions, walk with me in learning patience. We're human -

Oh, BTW...in the middle of writing this I cleaned up that floor. I went with a combo - swept it in a pile and then sat down to get it in that garbage bag.


Popular Posts