There are many different ways of getting there, but the end result is never fun. Sometimes you did too much, sometimes the meds stop working (or never worked at all), sometimes you have to stop the meds because of surgery or illness. And then your rheumatoid arthritis (RA) comes tap dancing back into your life, top hat, tuxedo, and a tremendous TA-DA!
For you, this doesn’t mean dancing and parties. It means your life closes down.
I’ve been there since the holidays last year. Right after Christmas, I got a nasty case of croup. It was bad enough in itself, but also necessitated going off my biologic for over a month. Just as I was starting to heal from the croup, able to speak again and get back into life, whatever medication I had stored in my body started to run really low. Enter the RA flare, complete with aching joints and intense fatigue.
I crawled back to work in February—because my bank account demanded it—but there was no energy for anything else. At all. I barely spoke to anyone and hardly saw my family and friends.
I don’t remember a lot from that time. When every day is more or less the same and your focus is turned inward as you are dealing with the pain and feeling like crap, nothing really sticks in your mind long enough to make a memory.
One thing did stand out, though. Being removed forcibly from participating in the world brings an aching quiet to your days that is more than loneliness. It is Aloneness. There are times when you are so profoundly and completely alone that it feels as if you were standing in an arctic desert, surrounded only by the howl of blowing snow. There is only you, the space immediately before your feet, and a blinding whiteout.
Every now and again, you see the shadow of what lies beyond. Perhaps it is a phone call from a friend. Maybe it’s a short visit that leaves you exhausted. Or it is Facebook photos of the people you know doing the everyday things you can’t.
And it’s almost worse than Aloneness. Being reminded of what you’re missing, of the warmth and the bustle of life just outside your door, the life in which you can’t participate, is heartbreaking. All of a sudden, the loss of your life has a sharper edge and it cuts deep.
I’ve been there so many times. Sometimes it’s a short while, maybe a week or so, others it’s a few months, and sometimes it was much longer than that. There are gaps in my life when I had to disappear to spend my time focusing on getting through each day and nursing a wounded heart, freezing in the whiteout.
Over time, I’ve discovered ways to breach the Aloneness. To push back against the nothingness and add moments of warmth and togetherness. I talked to my family and friends about seeing them in person, but made it clear that I would be honest about when they’d need to leave. That the visit might be no more than half an hour. We still saw each other, but the visits left me merely tired, not exhausted.
The phone is my savior, my connection to the world and the people I love when I am too depleted for an in-person visit. I don’t have to dress nice, I don’t even have to get out of bed, and you can keep a phone call even shorter than a short visit.
And then there’s the online community where people know exactly what it feels like to be stuck with an uncooperative body and deep loneliness. Twitter, Facebook, Instagram–my peeps are there, just a short message away.
I am back on my meds and they’ve started to kick in. My energy levels are not what they were before the holidays, but they are improving. And I am out of that arctic desert, back into the warmth of the world, and just a few weeks ago, I finally had enough energy to not be alone.
Having dinner with friends made me feel like myself again.
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Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.