RArainbow

A resource blog for young women living with (Juvenile) Rheumatoid Arthritis

Riding the choppy waves of Juvenile Arthritis

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Hi everyone! Today’s post has been inspired by this month’s Patient For A Month theme “What do you do when you can’t keep up?” which is being hosted by Leslie at Getting Closer To Myself.

When we live with a chronic disease, there are going to be rough days – days which are literally going to bring us to our knees. Whether you are newly diagnosed with autoimmune arthritis, or you are years into this journey, you probably know these days I’m talking about, right? Since these rough days are going to be a recurrent part of our lives, how do we deal with them? How do we keep it together and not allow ourselves to crumble under the stress of being the head manager of our unpredictable arthritis-infused lives?

I love the ocean, so let’s use that as an analogy for living with (J)RA. There are days when the waves are gentle and we are able to manage fine. Heck, we can even manage well. Despite the pains, we excel in school or our careers. We take care of and love our families. We climb mountains, we travel with our wheelchairs, we dance the nights away even when our joints creak with every movement. We think to ourselves, “Ha! Take that RA! I am your Master and you will never take me down. Never ever!” We have everything under control and we’re able to go out and have fun. We don’t even think about RA because we are so busy enjoying life and every beautiful thing it has to offer.

Then there are days when the waters get choppy and really, really rough. As many of you know, RA likes to flare unexpectedly. You can be fine one day and then find your entire body encapsulated by pain on the next. Also, when you have (J)RA and a wonky immune system, sickness tends to affect you worse than it would a healthy person. If I get the flu or a cold or a stomach bug, my JRA likes to flare up also. Sometimes the side effects of the medications can make us sick too. How many of us have spent days (and nights) throwing up due to the side effects of RA medications, or the after-effects of surgical procedures? Not fun, right?

But you know what? With time and experience we learn to manage these waters too. We learn to ride these waves, to swim or to tread water – even if we have never done it before. We do whatever we can to keep afloat.

But then comes the reality of living life with a chronic disease: illness doesn’t operate in a vacuum. In addition to managing sickness, we still have to live our lives. If you live with autoimmune arthritis, then you know that some days it takes every ounce of willpower and strength just to force yourself out of bed and get through that day. What happens when we’re already mentally and physically drained from fighting those (J)RA waves and life decides to send a tidal wave at us as well? What happens when “real life” intervenes and we have new challenges to face with school, exams, bills, relationships and work? How do we stay afloat then? How do we find a balance between managing this 24 hour/day illness with our regular life goals and daily tasks?

surferIn the past 22 years of growing up with JRA, I’ve found myself in countless situations where life and JRA overlapped and pushed me to extreme limits. And I know I’ll have many, many more situations to face in the future. In the past I’ve written about how my two knees decided to swell up and render me almost immobile just as I’d moved away on my own to start college. I remember hobbling and smiling a lot through tears, just so that classmates wouldn’t know anything was wrong (I don’t know why so many of us hide our pains, but I doubt we’re going to stop anytime soon :(). It took well over a month for those knees to return to normal, but in that month I learned to be a stronger person than I had ever been. I realized that I could manage completely independently even through a flare.

And I think that that’s what keeps me from going insane during those overwhelming flare periods, the fact that I’ve been through it already and made it through. Flares are painful, but once you realize the strength of your own body and your own capacity to achieve even with pain, your sphere of possibility suddenly becomes larger, even when you find yourself in new situations where you have no idea what’s going to happen.

The reality is that some days we may find ourselves bobbing up and down while trying to figure out the RA waves and life’s tidal waves. That’s fine. There is no guidebook and we are allowed to take as much time as we need to figure it all out. We may have superhero powers, but we are still human. Some days we may cry. Some days we may feel like we cannot endure anymore and we have no idea what’s going to happen. During those days I take a deep breath and remind myself of how far I have come with this illness.

In your most difficult moments, try to remember that your bad days are just that: bad days in a lifetime of days. A rough day does not dictate the course of the rest of your life. The flare will not last forever. Eventually those days pass and we realize that we actually were able to withstand that rough patch. We realize we are stronger than we knew. And that strength makes us feel a little more confident for the next time life sends a tidal wave in our direction. Cry if you need to get it out of your system, but don’t allow yourself to dwell on negative thoughts. Think about the support you have around you and the wonderful things you have going for you in your life.

If you find that you’re waiting and your situation isn’t improving, make a promise to yourself to make your life better. Do something – whether it means seeking better treatment,  making time to relax or going out and doing healthy activities which make you feel happy. I have outlined some coping strategies in my previous post How to keep (J)RA from taking over your life. Learning to cope isn’t an easy process, but time and experience does help us to find what works for each of us. Let’s train ourselves to ride those rough waves.

This is a great topic and I look forward to reading the other posts in this series. Feel free to share your comments as well.

Thanks, and hang in there friends!
Love,
Ms. Rainbow

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2 thoughts on “Riding the choppy waves of Juvenile Arthritis

  1. Great post! It’s true how arthritis isn’t inside a vacuum but rather in life, so we have to deal with that and whatever life throws at us. We try not to let arthritis dictate our lives as much as possible, but I really wish our lives could dictate arthritis. You know, like “Well, she’s going on holiday this week so no pain over a three,” or something like that. 🙂

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