The graphic to this post was created long ago. My condition has since been upgraded. I have ASIA–from those damned shots.
Sounds like an unpleasant topic. It is and it isn’t. It all goes by what you are willing to accept. That said, Autoimmune disease is a pain in the arse.
I used to be able to type as fast as I thought. For a writer, this is a beautiful thing. It’s better than a roll in the hay. It’s better than almost anything. Now I hunt and peck with two or so fingers. I know people think that the voice recognition software should suffice, but I’m not good at that yet. My fingers flying across the keyboard was a wondrous thing. Perhaps I’ll adjust to that software at some point. I remember when my hands started crippling up. I prayed to myself; take my legs, not my hands. But I wonder now if I really meant that.
Underwear is a thing of the past. I wear Depends now. Yep—you heard that right—Depends. You have no idea how hard it is to give up underwear. It’s those little things you miss. I remember telling myself that this isn’t going to work anymore—that running to the bathroom every ten minutes to prevent accidents was a joke. I’ve been potty-trained all my life. Now I had to admit that was no longer true. Things beyond my control prevent control. I am content with my decision to move on.
[Update: It seems pharmaceutical products stole my continence. Now that I am pharmaceutical-free. I have regained this simple control.]
Moving out amongst people is different. There are times I teeter-totter like a drunk, and I feel I have to explain to people I have a disease. I’ve read where people have been fired from their jobs because they were suspected of being drunk on the job, but they had Autoimmune Disease! I’ve had people rush to catch me, but I assure them I’m fine—I have Autoimmune Disease. I tried to get a job before my Autoimmune Disease was too obvious, but failed. People won’t hire you if you’re disabled. Oh sure, there’s a law against that, but remember—they just don’t have to tell you why they won’t hire you. If they said, “We can’t hire you because you’re disabled,” I could sue the pants off of them.
My body is numb. I remember the first time I scratched an itch and my fingernails couldn’t seem to reach it through the flesh. I had to stop scratching or I’d tear through the skin. The itch reigned, and I waited for it to subside. It’s nearly an everyday occurrence now. I sing a song in my head: I scratched the Itch and the Itch won….
Sex is a thing of the past–a distant memory. I can’t even tell when I have a UTI never mind enjoy such intimacies.
I think the thing I miss most is my hands. I used to service my computers, sand down my walls, cut my own damn toenails… All that is gone now. Typing be damned—I can’t cut my toenails.
I’ve had to adjust. If I spend all my time mourning what I’ve lost, I cannot revel in what I still have. I can still think. I can still do repairs on my house albeit daunting and slow. And I am still breathing. I refuse to look towards a bleak future, and I choose to live in the moment. The moment could be all I have. At any moment, my arms could choose to drop uselessly to my sides, and I will head to a nursing home to be fed and cared for. Just think of what you cannot do without the use of your arms.
My days are loudly numbered. But this is true for all of us. The whispers in my ears are just louder than yours.
So I’m here today, and I’m glad of it. I’m speaking to you, and it gives me pleasure to do so.
Now if I could just get used to that damned recognition software.
Copyright 2017 Joyce Bowen
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