My Reality of Rheumatoid Arthritis at 32
I couldn’t do something for the first time today.
Not “it hurts too much to do it.” I can power through that.
Not, “I really shouldn’t do this” because my body is too fatigued or in too much pain.
I very literally, physically could not do something. I might as well have been trying to lift a bus…only I wasn’t. I was trying to squeeze a small bottle of medicine for my son.
As I stood staring at my hand as it was trying to squeeze a bottle, my entire inner being was in shock as it just…didn’t squeeze. My hand wouldn’t perform the simple movements needed. And I just kept repeating a panicked “My hand is not squeezing. This isn’t working!” in my head. It was like that scene in “Kill Bill” where Uma Thurman is sitting in the truck trying to will her toe to move.
This lack of squeezing didn’t even hurt compared to a major flare. There was minimal pain involved, but loads of grief as I realized how rapidly I’m losing the ability to do basic tasks.
When people think of rheumatoid arthritis (RA), they often think of older people with joint pain. In reality, RA is an extremely dynamic, multi-faceted illness. First, it affects people – especially women – of all ages. Second, it encompasses a lot more than joint pain. It’s an auto-immune disease related to inflammation and causes all sorts of things including fatigue, pain, sight problems, headaches, nerve and muscle pain and weakness – an extensive, laundry list of related issues. It should, in all reality, be called “rheumatic disease.” It affects the whole body.
Basically, if the inflammation can cause just enough pressure in exactly the right (wrong?) spot, it can affect anything. If the auto-immune issues can stir up trouble related to colds and illnesses, they will, and you can get sick all the time.
For me, however, my three year journey with rheumatoid arthritis been mostly extreme pain and fatigue.
And I didn’t realize how lucky I was.
Suddenly, the world is drunkenly blurry even with my glasses on. I have weird nerve pain on my scalp that feels like fire to touch along with dizziness and headaches, all because the inflammation in my neck is pressing on nerves at the top of my spine. My feet go numb and my legs go weak because the inflammation in my lumbar spine is pressing on those nerves, too. About a month ago, I noticed I suddenly have the beginnings of three rheumatoid nodules on my finger joints. I’ve had problems zipping my boots, turning the key in the door, and my fingers don’t want to type or hold my phone so I can text. And the hardest? I’ve almost dropped my son several times when trying to put him in his swing or picking him up.
Today, I couldn’t squeeze a bottle. My hand just didn’t want to function that way and my other hand isn’t doing much better. It didn’t want to hold the baby and I had to shift arms. It didn’t want to pick up a lightweight, empty, plastic bowl and I dropped it in the floor and woke up the sick baby. Every time I try to do something, I can’t do it.
I’ve known for several years that I have a horrible, degenerative disease and would progressively be in more and more pain. That scared me, of course, but I’m not too scared of pain. I don’t think it hit me until today, though, that there will be things I will actually not physically be capable of doing. Not because it hurts too much, but because my body won’t work the way it should. And, at 32, that’s already starting. I’ve never not been able to do something.
I am terrified. I paint. I crochet. I work on a computer for a living. I have a teenager, a 6-year-old, and a new baby to play with, raise, and love on. My life revolves around the use of my hands. Will I even be able to help my youngest son button his shirts and tie his shoes in a few short years? Or paint with him as I did his older siblings? My happiness and spirit revolves around the use of my hands.
So I’m going to go buy a stress ball to exercise my joints. Maybe some of those hilarious arthritis “make your life easy” tools you see on QVC so I can stop throwing kitchen utensils around in frustration. Breathe in healing. Remember not to take it out on my family because they love me and I may eventually need them to open doors and turn on my shower if I want to not stink or be able to get in the car.
This is a part of my journey. And I don’t know why, but I have a feeling I’m about to learn a whole lot of lessons in humility, self-love, and who I am as a person without all my gadgets and talents and busy work. And, it’s scary.
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Photo by Amanda Lovelace Photography