My reality hits me every time I change the sheets on my bed. It takes me so long to accomplish such a simple task that should be a wham bam job. In the past when I changed the sheets I would get worn out from my muscle weakness but now with the added shortness of breath the job seems even more monumental to me.
I am constantly reminded how we all take the simple things in life for granted. I imagine a healthy person my age competing with me in a bed changing contest. It always makes me laugh. The funny part is when I'm in a situation like changing the bedding my brain turns to humor, at least at some point in the job. But not before I get angry and start ranting internally. It brings back all the snarky comments asking, "How can you be home all day?" "What do you do all day?" "Oh you don't work?" All time me with an angry face ready to punch someone. By the way that is the best conversation killer of all, just tell someone you don't work and the looks and strange silence where there was conversation is hilarious. I hate to admit it but it almost brings me some odd sort of joy now when someone asks where I work or what I do and I blurt the, "Nothing," answer. Like I said that's my odd sort of humor. I don't understand why we are so wrapped up in titles. I have a title, wife, mom, grandma, daughter, friend to a select few. Proud of it too. I don't think my life is any less lived than most but its my life so...plus I need to be home for all the people who text me or call for therapy. Yup my life might be not be what everyone else thinks it should be but I get to tell everyone what I think about theirs. Who wouldn't love that? Fools. Haha
I laugh in the mornings too, at times. Those are the worst. I wake up many mornings and lay there. I mean literally lay there for a half hour, sometimes an hour, before I muster up the courage to get up. It's rough. No ones understands or see's that part of my life. Most people wonder why I don't work, I wonder why most of them wonder. Actually, I wonder how most of them can. I have no choice. It's painful to say the least. I dream of it but then am slammed with the reality that it takes me 3-4 hours to wash and change my bedding. Now add to that the rest of life, keeping up a home. If I worked all the extra money I made would go to a housekeeper, chef, finding someone to shop for me, etc. Being chronically ill sort of makes all those things your job. Oh, and along with that taking care of yourself thing which takes center stage when you are sick. Life is all about that. Sadly. Believe me you don't want it to be but you have no control over it as hard as you try it's always there.
Yes, I'm on medications that help but they don't cure. Whenever the words come out of my mouth that I am feeling better it seems I eventually get slammed back down. It's like one big circle jerk of fun let me tell you. I try to rationalize it all in my head, making my life matter like everyone's does. I sat down to write this as soon as I got done putting the fitted sheet on the bed still huffing and puffing, still chuckling to myself a little while my reality also brought tears to my eyes. Fair? Nope. But it is what it is. We all have our stuff. I think dealing with our stuff and realizing we all matter no matter how insignificant we think our life may be is the most important gift we can give ourselves.
There goes the dryer, time to get the blankets on the bed and either laugh or cry, who knows. Take it as it comes and enjoy the ride.