I've had a four-letter word thrown at me from the first day I visited a rheumatologist right up to a phone call I got earlier today.
It's "Rest."
A doctor told a 19-year-old girl she should try to get some rest every afternoon.
Being 19, I thought he meant maybe for a week or so, not every day for the rest of my life.
Looking back, I was fortunate.
The relentless fatigue that comes with rheumatoid arthritis and all of its cronies didn't begin to manifest with me until my 30s. Even then, though I knew I was tired, I couldn't say "No."
I had to learn the hard way when your body needs rest, it will get it.
I couldn't read a book without dozing off. I'd miss the end of movies and TV programs because I'd shut my eyes "Just for a second" during the last commercial break" before the big reveal.
I could fall asleep on an airplane before the safety lecture and not wake up until the wheels touched down.
I finally had to admit it. I needed to take control of this nasty thing called fatigue before I died trying to defy it.
First, I learned that stress is the kryptonite of rest. If you're stressing about anything, any rest you might have gotten is gone and fatigue takes back over.
I learned to say "No." It was hard but the time I gave myself by not doing something gave me time to finally use that four-letter-word.
I learned not to be home. If I really needed to take it easy, I stopped answering my door to all but family members. I screen my phone calls the same way. I have more uninterrupted time for me.
I stopped feeling guilty for missing parties of all kinds. I could send a gift, a card or call with an apology and still feel good. Everyone won.
Now, I pick what events I want to attend. I spend a week before doing nothing but resting, trying to maybe store up a little extra energy for the big day. I decide what time I want to arrive about how long I think I should stay. (This bit is flexible.)
I plan what I'm wearing days before so I can make sure they're clean and especially I know where they are so I don't worry about finding them while I'm getting ready.
If I can get a ride or get someone else to drive, that's one less stressful thing.
I start getting ready well before time to leave and am ready maybe 30 minutes before I need to leave.
It sounds like a lot of work, but it really does lessen the stress that is the biggest energy-sucking thing there is.
Even doing all this, there are days -- maybe the weather dropped in to say hello or your pain levels won't drop to levels that allow you to speak without clenched teeth --when fatigue wins.
You spend the day swaddled in blankets propped up on the couch if you can make it that far, and let your meds do their work.
RA is a tricky thing. No matter how hard we work to have energy to do things we must do, sometimes we have to just lie down and say whatever four-letter word comes to mind.
A PS-- It's seven hours later. I wrote this, saved it, put my head back and fell asleep. I'm posting it and going to bed. Some "rests" are longer than others.
Sandi:
ReplyDeleteI so totally get the 19 year old you describe in your post. I was Dx'd with diabetes as a 17 year old and my first thought was wait I had these plans. I did not handle it very well.
While I was dx'd later in life with RA, 43, but when I was I with more vigor than when I was Dx'd with diabetes. It wore me out in short order.
rick
Your comment "every day for the rest of my life" really hit home for me. Although I was diagnosed 3 years ago, I don't think I've fully accepted that this is how it's going to be. I need to work on that.
ReplyDelete