The air beyond my comforter is cold, laden with the dampness of last night’s rain. I move slowly, listening to the music of tiny cricks as my muscles come to life; I stretch out, feeling the bulge of swelling around my ankles, knees, and fingers. The heat from my mattress pad has taken the worst of the morning stiffness and when I rise and start moving, that generally takes care of the rest…it is another morning, another beginning to the day-to-day, hour to hour, minute to minute of managing life with RA…
The medical team has done their part – they ran the tests, found the diagnosis, prescribed treatment, answered my questions, but no matter how much information they provided, they were unable to tell me how I was supposed to deal the everyday living with RA. The most common question I’ve heard since entering this twisted world of inflammation is: how do you manage? It’s a question that always puzzles me because it is a difficult question to answer – because we are all different; because the disease doesn’t manifest exactly the same way in everyone; because there is no one solution that will work for everybody.
I never really put much thought into how I managed. I just did. I just continued to push through in the same way I coped with all my challenges in life – if I lost my job, I found another; if a relationship ended, I moved forward. I became a shapeshifter, moving with the flow instead of against it, and I did the same when RA arrived. I pooled the things I learned from my medical team with the suggestions from others and shaped them to my own needs. I sleep on a heated mattress pad to reduce morning stiffness; I adjusted my exercise based on how I felt on any given day; I did contrast baths in the morning for my hands to reduce swelling, I used ice packs to shrink my swollen fingers; I wore finger splints and wrist braces for extra support – but these were just the corporeal ways of managing – there was another side that proved to be more effective.
Perspective and attitude is a big part of management – that is where I draw my strength. I have managed to turn the tables, choosing to focus on what RA has taught me instead of what it took from me. It has taught me to slow down, to delight in the small things that often went unnoticed in my previously vigorous life. It has taught me to be kind to myself, to pay attention to what my body is telling me. RA has given me permission to take care of myself in ways I never considered before. It showed me how to take the physical and combine it with the spiritual and psychological. A hot fragrant bath not only soothes my joints, but calms my mind. I take advantage of down times from RA by reading that book I bought months ago, catching up on a movie, or even journaling about the stillness of my day. A hot cup of tea not only provides me the pleasure of its spicy savour but also comforts my cold stiff fingers on the warmth of my mug. I don’t measure accomplishments and failures in the same way I used to – my expectations are more lenient, but not less potent. I have learned to find value in the day-to-day management of my disease.
Managing the complexities of RA is not easy and certainly not predictable. There are days when RA simply says “no you don’t”, and I just accept it knowing that life is always shifting and I am malleable enough to shift with it. I manage by appreciating every little thing about today and knowing tomorrow is always a new beginning.
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J.G. Chayko is a writer, actress, and international arthritis advocate who’s been involved in theatre for more than 30 years and has published poetry, fiction, and creative non-fiction.
Excellent post with perfect descriptions of how this disease affects our day-to-day living–and the unpredictability of it. Love your perspective as it is how I’ve come to cope with it, also. Thank you. Take care.
I wish you more good days than bad in this wild and crazy battle. So nice to have you visit and thank-you for your lovely words. Cheers.
Beautifully written. I love the words you choose. You write beautifully.
I may not have the same awful condition as you do, but you still described alot of thoughts and feelings that often ponder my mind. It’s good to know when your body says “no, stop ” and you make sure you do it. You handle things so well it seems, and you’re so wonderfully honest. Truly lovely.
Thank you. Yes, it’s important to listen to your body – it tells you when you push too far. I think, however, there are still times when I need to listen better 🙂 Wishing you well.
Learning how to function in day to day life with a chronic condition is a constant lesson. It keeps evolving and changing over time. There are always times when we need to listen more. But it can’t be helped sometimes, unfortunately. Thank you for your well wishes. Sending then right back to you.
It’s true that RA changes your perspective in so many different ways. Many for the better. I’m glad you mention the psychological. When I was at my worst, I could not hold a book of any weight, hardback or paperback. My hands hurt too much, my wrists, my elbows. Even propping it up on something did not help because I still had to hold it and turn the pages. But not reading was never an option, so I got an ereader and now my extensive library fits in my purse. But the funny thing is that even though I can now hold a book, any book, I find myself still shying away from buying actual books that aren’t textbooks or reference books, which I need in hard copy. The pain might be gone now, but the memory of it isn’t. And in the background of my mind, I know it is not gone forever.
Oh, yes I understand the book thing. My hands get tired hanging on to my books sometimes, so if I’m at home I lay them on an elevated pillow in front of me for support.Of course, this then poses the challenge of being able to see the print 🙂 And I have lots of “pain memory” from things I’ve tried and like you, I tend to shy away from doing that action again. For example, I rarely pick up a mug of hot tea by its handle with only one hand – I can already feel the burn in my wrist when I think of it.But I’m glad you found your e-reader, so you can still enjoy what you love.
You should try writing a book about managing RA J.G. I’m sure many would benefit from your insights. 🙂
Thank you. There are a couple of ideas in progress 😉 Hope all is well with you. Cheers.
I’m getting there, but there’s something on my heart which I had a CT Scan for… still awaiting the verdict. 🙂