I spent the last two days home “sick” with an RA flare-up. Any evening plans I had with friends were cancelled. I have so many projects I want to work on, and it’s frustrating when my time is free, my ideas are on fire, and my hands don’t work. So mostly, I read comic books and thought about the impact that having RA has had on my life.
Flare-ups are different for everybody and sometimes different from each other. For me, it is most commonly found in my fingers and hands, but it touches so much more. It affects my relationships, my ability to care for myself, and has taught me a lot about “spoon management.” I certainly can’t speak for anyone else, but the following is, currently, the best I can explain how it has affected me.
I generally experience the pain in my hands. RA is commonly exhibited in both sides of the body, in some sort of mirror effect – I’m not sure how or why (honestly, I’m not sure doctors do, either). On good days, I wake up to stiffness that lasts through lunch time (insert joke about morning stiffness). On bad days its a fiery, shooting pain in my knuckles, palms and outer sides of my hands, accompanied by swelling. Prior to my diagnosis, I was feeling it into my elbows, but it luckily hasn’t been that bad since I went on the meds.
I also frequently experience soreness and stiffness in my shoulders, lower back and hips.
I keep all of my pills in one of those cases labeled by day, so I will remember to take them and know if I missed them. I take an immunosuppresant to slow the progression of the arthritis. I take Folic Acid, to help me absorb the immunosuppresant. I take a corticosteroid to deal with flare-ups. I take naproxen to counter the swelling. Everything else I take has to be approved by my Rheumatologist, just to make sure it won’t react with my other drugs, vitamins included. The immunosuppresant has been tapered up and the corticosteroid gets adjusted along with my flare-ups. One day not so long ago, I had to take seventeen pills in the morning. SEVENTEEN. Which, in my opinion is too many. And nothing helps the pain quite like cannabinoids do.
I wrote about it before, but the quick story is: I started going to the doctor for hand pain in October. It was originally diagnosed as carpal tunnel syndrome. I went to physical therapy. I didn’t get better. I went to the doctor. I did some tests. I did some more tests. I finally got diagnosed with RA, and then spent the three longest weeks of my life waiting to get in with the Rheumatologist.
Recently I found an old journal from last May in which I was complaining about hand pain then, too…
The good news is the x-rays say I haven’t horrifically disfigured my joints yet!
So just imagine that everything you touch feels like sticking your hand in a fire. That your knuckles are made of ceramic ball joints with no lube in between – like if the nails-on-a-chalkboard sound could be converted into a feeling. Now you’re getting it.
The limitations were and are the hardest part of the RA. Those strappy summer sandles? A mere fantasy, now. I have days where I can’t tie or buckle my shoes, so I exist solely (ha punny!) in slip-ons now. It also means “managing my spoons.” Today is a good-enough-to-work day, and I’m wearing a sports bra, because fiddling with the bra clasp was just too much to handle, because I washed my hair. My hair needed washing more than my boobs needed to be up high.
I also got a new bike – a shiny recumbent that sits like a chopper and rides like a big wheel. This means that I can still get around when my hands are too sore to lean on. This has been the awesomest part of RA.
Asking for Help
My partner is amazing. He has been with me through all of it, and it doesn’t go unappreciated. But there are days when he gets stuck with all the dishes or chores or necessary yard work, and I feel bad. I feel bad because I want to contribute… being independent is a big part of who I am.
It’s not easy to ask for help, but it’s equally difficult to get the help you don’t ask for. And it’s downright humiliating when the help you need is with really simple things. He’s helped me get dressed, cooked for me, and opened what feels like every beverage I’ve had in the last 8 months.
I remember one day, at the grocery store, getting SO FRUSTRATED because I wanted to put a tomato in a produce bag, but only one of my hands was capable of holding the weight of the tomato. If I got it into the bag, it would be held with the other hand. Coming up with the words to express this, in the moment, in the produce aisle was no easy task for me… the tears welled up and I snapped out a “can you help?” I realized then that some mole-hills will be mountains to me, and the best I can do is ask for help with grace.
I will never have enough thank-yous to cover the gratitude I feel that he has been there to help every damn time. I can’t even imagine how taxing that must be on him.
I still haven’t been able to ask others for help.
One thing I worry about a lot is how I fear being perceived as a flake, when really I’m an introverted person with chronic pain and a very real depression. When I’m on, I’m SO ON, and can be social and funny and fun. But most days I just don’t have it in me. Most days I come home from my slacker job exhausted, and spend what energy I have left on house chores. Dishes pile up. Laundry piles up. Emails pile up.
About six month ago, I lost a friendship because the other person felt I wasn’t doing my part. I had cancelled plans more than once. I wasn’t showing up for her and no amount of trying to explain what I was going through (especially pre-diagnosis) was going to change her feeling that I couldn’t be the friend she needed me to be.
While I can’t go back and change the course of that friendship, I find myself thinking about it a lot. Truth is, I’m still not sure how to balance friendships with the reality of my day to day, nor am I sure how to balance my energy so I don’t burn out one day and suffer the next few. I try to let friends know I’m thinking of them and I love them. But sometimes I have to cancel plans. Sometimes I have to stay home. Sometimes I go out only to find that I have less energy than I thought, and have to go home.
I’ve come to realize that this means I am not the best friend to everyone, and I just have to accept it. And the truth of the matter is, any friend worth keeping is at least willing to hear me out. Or come over and keep me company. At least this is what I keep telling myself.
But the hardest part hit me a few days ago, when my hands were so sharp that I was proud I managed to post a picture to Instagram and Facebook of Baby Skipper laying on my chest like Gunter used to (see above). People sent me THE SWEETEST NOTES, full of love and good wishes. I had to wait to reply because my fingers were made of inflexible ceramic sausages, and I wanted to let people know I heard them and cared. That waiting is the worst.
Well, I can’t change any of it, so I’m learning to accept it. I guess, learning that skill is ultimately what I get out of the RA. If nothing else, it’s another opportunity to grow. I’m glad for the people who have stuck with me, and grateful for all of the help, encouragement, love and good wishes I’ve received. I may experience pain, but all in all life is pretty good.