I had plans for today. Not huge plans, just laundry and showering and doing some things around the house. I had a blog post planned, I scheduled my ride for tomorrow’s plans. Then at about nine this morning that all went out the window.
If you’re a long time reader of my blog, you’ll be familiar with The Spoon Theory. If you’re not familiar with that, please go read it. It’s about the author’s life with Lupus but it fits MS as well. It fits any disability.
At nine this morning I knew I was running on a half supply of spoons. Sometimes I don’t get my full daily allotment and I never know when that will happen. It happened today. I was just…so…tired. Healthy people like to say they’re tired too and I just smile and nod. It’s not just tired. It’s mind numbing bone aching blood thickening toes hurting eyes drooping fatigue on low spoons days.
I accepted that I wouldn’t do the laundry. I thought I’d manage a shower at some point. I talked to Carol and said I was so tired for no reason and she said, “you’re not tired for no reason, you have MS.”
After over six years of knowing I have this thing I still try and explain when I’m tired. I think back to the night before. Did I sleep all night? Yes. Ok, so what did I eat yesterday, was it healthy? Yes. Did I have breakfast today? Yes. “You’re not tired for no reason, you have MS.”
So I decided if I didn’t shower that would be ok. I could tell that a shower would completely wipe me out and I didn’t feel comfortable standing in there without B home. A few weeks ago I admitted to myself that I need a shower chair. That was one of the hardest admissions of my life. I still haven’t gotten it. I need to. Why don’t I just take a bath? Because getting too warm robs me of spoons too.
All day I’ve wondered what I would blog about. That’s one of the downfalls of committing to anything when you can’t always count on having spoons. Luckily it doesn’t take much brain power to write about all this since I live with it on a daily basis. Hopefully tomorrow I’ll be a little less foggy and can write one of the things I’ve had planned. One of those things is a letter to myself in twenty years. It’s the follow-up to the letter to fourteen year-old me. However the future is a very scary thing to think about and I think I need to know what the next four years might look like before I can begin to think about where I’ll be in twenty.
So, when you think about sick people, those who rely on government money because they don’t work even though they don’t look sick, read the link above. My blindness and my guide dog make my disability visible but before I was blind, even the government didn’t think I was sick.
I think it’s good I wrote this too late to change anyone’s mind about who they vote for, because I know I can’t change anyone’s mind. My hope is that maybe people will have a little more compassion towards each other as we move along. The next time a pretty woman says she’s disabled and lives on disability, before you judge her and assume she’s just using the system, think about how many spoons her trip to the grocery store might take and how she’ll just have enough energy when she gets home to put away the food that needs refrigerating. The rest of it can wait.