Wednesday, August 12, 2009

24 for Rheumatoid Arthritis Warriors

We Live With Rheumatoid Arthritis 24 / 7

I wanted to do a" 24" segment on RA to show what it’s like to live with it 24 / 7. I wrote this down a couple months ago, but I saved it for today because I wanted to post it right after the joint protection article.

Here is one hour in the life of an RA-er delivered in three minutes.

Warning: This will be annoying journey into Life with Rheumatoid Arthritis.

Think of it as an amusement park ride which you want to try, but you know will probably also exasperate you. If you choose to board this ride, please be aware that nausea is a strong possibility. Stay inside the vehicle until it comes to a complete stop. That will be in approximately 3 minutes. Enjoy the ride.

Last night I was awakened several times by noises in the house. It was not an intruder. It was my knees. I turned to my right side; neck clicking. I turned to my left; shoulder grinding. Back on my back to for deep breathing; no way to keep my elbow from touching the bed.

Anyway, I’m tired today. I feel like slept on the tracks while trains ran over me all night long.

Ouch. My knees are screaming. It breaks into my thoughts.

I am not hungry, but I will eat breakfast soon so I can take meds. That’ll help. And vitamins. Yeah, my cure. Just eat right and I’ll be fine…

Laundry left that I could not finish last night. After six p.m. I can barely move. Bending to open the dryer: POP! That was my hip. Opening the washer lid with the sides of my hands; my fingers are too weak. It pulls them out of place. Wet laundry is heavy. When I try to pull out one piece, the washer seems to pull it back. Oh my gosh! My big toe is screaming. Pulling the laundry with all my might, I’m dropping it down to the dryer door.

Starting a new load means soap. I got a little bottle, but it still weighs 40 pounds, to me anyway. I reach up to open the cupboard and my shoulder grinds loudly. I call out to my daughter in the next room: Did you hear that? I do my drop / fly trick: I get a hold of the handle on the soap bottle and let it drop down to the washer top: bang. It is falling by gravity and I just have to stop it from going all the way to the floor.

Grabbing the bottle lid with the whole hand, I ease it off. It’s not tight because no one else touches it besides me. I do my spill-pour trick: I put the lid low inside the machine and I spill down into it so I don’t have to lift the bottle to pour.

Drag up a load I sorted yesterday and push it into the washer. I turn the dials with my special technique using four fingers as if they were one; hoping to prevent ulnar deviation (turning toward the outside of the hand). I turn and bump my shoulder on the cupboard as I close it. It will not stop hurting in a few moments like it did once upon a time when RA was not 24/7. It will hurt more and be sore for a couple of hours.

There are laundry baskets between me and the door. I can’t step over them because of my hips, so I just step into them.

My toddler needs help to get dressed and make his bed. Slowly, I bend and pick up toys as I talk to him cheerfully about our day. I cannot fluff his pillow because my fingers are not able. I smooth the sheet the best I can and lay the quilt on top.

It hurts my fingers to use the drawer pulls. It’s as if the drawer pulls back, trying to separate my fingers from my hands. I get his clothes and sit down in the chair. My wrists are killing me as I hold out his pants for him to step in. Hurry up! I can’t keep my hands in this position for long. He wants juice.

I shuffle to the kitchen. Both hands grab the fridge door handle. I bend my knees and pull with all my might. It won’t come. OOf. Finally, it pops open. The orange juice is full. I cannot reach up and take it with a hand. I move whatever is in the way and reach up with both full hands and tip it into my arms. I hug the juice to the counter. I plop the bottle down.

Cups: Reach up or bend down? Up for a glass which seems to weigh 10 pounds or down to get a plastic cup. I always pick cup. Pop goes my hip and my knee. The sounds are usually accompanied by pain. The cups are stuck together and I cannot get one apart. One of my kids runs to the rescue. I could do the spill / pour with the OJ into the sink, but I have help and I gladly accept it.

My daughter pours some milk into a cup so I can add what I want to my cereal. I cannot pour from the gallon. She takes good care of me.

If you have RA, you may have nodded along with me. If not, try to imagine how annoying it would be to not only READ it, but to LIVE it 24/7.

This has been the beginning of a typical morning in the life of a Rheumatoid Arthritis patient. Many RA-ers are worse. Some are much better. I would have liked to bring you more of this morning, but no sponsors would agree to broadcast such dismal programming. As a matter of fact, this “half hour in the life” segment has been brought to you solely by Rheumatoid Arthritis Warrior.


Robin said...

I do not have the challenges that you face in this article - at least not yet. I will admit there are days when I am pretty bad: can't pour the milk without spilling, takes to hands to lift something, pain from minor bumps, etc.

I appreciate that you are committing time and talent to producing this blog. I appreciate it so much. It makes a difference in my life with RA.

mallen said...

I'm not usually as bad as that either, but my hands and wrists are swollen and achy frequently. I always wondered why my joints always made so much noise. I didn't realize that other RAers have that. I have nights like what you described. It's annoying when you can't find a comfortable spot to sleep. The other night I couldn't sleep on one side because of my hip. I couldn't sleep on the other side because of my shoulder. I couldn't sleep on my back because of my elbow!! Aaaarg! Oh well, I just try to laugh at these situations!!