RA Guy recently wrote about his ambivalence concerning the possibility of having to use a wheelchair in the future. He’s a positive person and a pragmatic one; eventually he came to the conclusion that there’s no need to be ashamed or to feel diminished because one needs assistive mobility devices in order to maintain one’s independence.
Walking isn’t a problem for me right now. But there have been many times in the past when my rheuma-caused pain and disability made the world seem pretty bleak.
In the first years after I was diagnosed, I lived in a German maritime city on the coast of the frigid, stormy North Sea. The surrounding land was flat, a strangely beautiful mixture of marsh, moor, farmland and patches of deciduous woods. Across this level plain the sea winds danced, whistling and shrieking their way through the seasons, all of which were damp and only one of which was warm. The winters in Norddeutschland were utterly, bone-chillingly cold. Snow was rare. Slashing rain, sleet and glazings of ice were not.
I absolutely loved it there. Living in Germany, in Europe, was a lifelong dream come true. Then Rheuma crashed the party.
Sometimes it seemed like it was working in collusion with the weather and the Fates. RA would strike my knees, my ankles, my feet or toes on the very same, frigid days the dang car wouldn’t start. (we had an old BMW 2002 that refused to run for more than two weeks between trips to the garage.) So I’d venture into the pre-dawn, winter dark, bundled up like the little brother in The Christmas Story, gimping and cussing as I walked the four-block journey to the bus stop as fast as I could so as not to miss the bus and end up standing in the cold for another 20 minutes. Once on the bus I’d greet my German neighbors, grab a strap and stand for the whole ride into work, as there was seldom a free seat. In the course of a day, I’d limp rather than drive from one end of the U.S. Army kaserne where I worked to the other, doing my job. And when the day ended, I’d repeat the whole process in reverse.
In a car, these distances were nothing. But walking even short distances with a flared knee or foot in those cold weather conditions were, I realize now, feats of courage I’d never have believed I could muster.
Yet I did it. Frequently. And I smiled and laughed and conversed with people because I didn’t want them to know how frickin’ bad I was hurting.
Of course, there were times when the pain was so intense I couldn’t bear moving, so I’d call in sick and stay home. I never got comfortable with that; I always felt like I was being a weakling, and that others would think I was faking it. I wasn’t – and I loved my job – but no one I knew or had ever known had RA. I knew little about it myself, so I had no context in which to place my pain, disablement and, sadly, my shame.
After a year or so of living with frequent flares, I learned to just use my cane when I needed to. I learned to use crutches, too, for those times when I couldn’t bear to put even a little weight on the affected joints and my doctor, stumped, put a plaster cast on my foot and told me to stay off it for several weeks. There were so many times when I’d have given just about anything for a wheelchair just so I could get off my feet or stop using my aching hands or shoulders to support my weight. But I never dreamed of asking for one.
I didn’t like having to use a cane or crutches. I didn’t like how they made me stand out (although I’m sure my limping made me stand out anyway). When I used a mobility aid, sometimes people would ask, solicitously, how I’d hurt myself. I’d have to explain, embarrassed, that I wasn’t hurt – I just had rheuma and my foot was flared. More often than not, they’d blink and change the subject. I couldn’t blame them – even to me, I sounded like an attention-seeking wuss.
I’d like to think I’m past embarrassment when it comes to mobility aids, but I’ll admit I don’t like wearing my Spidey-gloves in public. And I’m a little ambivalent about my old cane, which hangs hidden in the back of my closet. Although I haven’t needed it in many years, and even though the disease was in remission for a long time, I could never bring myself to get rid of it. In the back of my mind were the quiet warning words, “just in case.”
What’s new to me is this rheuma fatigue. I just don’t remember getting so wiped out so easily when I was fighting the disease originally. It keeps catching me out. Yesterday I was doing a little Christmas shopping with Mr Wren. We were in one of my favorite stores – World Market (used to be called Cost Plus). I love browsing through this store at any time of year, but I particularly love it during the Christmas season because they carry so many of the candies, Christmas things, ornaments and specialty foods I used to see when I lived in Germany. Wandering around World Market puts me into a sweetly nostalgic mood. I rarely leave empty-handed.
And yesterday was no different, at least that way. What WAS different was that after 20 or so minutes of perusing the aisles, suddenly I was tired. And I mean sit-down, close-your-eyes, hug-your-knees tired. I knew I had to give it up. We still had to go pick up my car at the auto mall (Mr Wren had bought a new Toyota Tacoma the day before and left my Kia there overnight). I still had to drive it the 50-plus miles home.
Well, we made it, but I was truly done in. While I can recall times in the past when I was so tired after a long day at work that I could barely drag myself up the three flights of stairs up to our flat, it’s not the fatigue that stands out. It’s the pain.
Today, it’s both.
Rheumatoid arthritis is completely unpredictable. I hope it will be a long time – if ever – before I need to use my cane, get crutches again or use a wheelchair. But I know better than to ignore the possibility. Acceptance, with every else that’s good in life, comes with time.
Finding the balance between acceptance and giving up is tricky. It sounds like you’ve figured it out, Wren. Again, another piece of great, descriptive writing.
This is something that I sometimes worry about, too. I’ll admit I still feel some of the shame you write of, some guilt when I need extra time to myself or have to say no to something others are doing. I feel like a wimp.
Acceptance is slow in coming, but it does come, and it will come in the future if I need a cane or a wheelchair.
Thank for this post, reading your words made me wonder to myself why all of this is so difficult to accept at times…especially when we know that it is what is best for us.
WarmSocks: Thanks for the comments about my writing. I’m a journalist, and I’ve been unemployed for so long now I worry that I’ve lost my “touch.” Nice to know it’s still alive. And yes, that line between “acceptance” and “giving up” is very vague. It’s a constant effort.
Helen: The thing is, we’re NOT wimps. Not even a little. We handle pain and compensate for it far better than most people would ever believe. Now we just have to believe in ourselves. Easier said than done.
RA Guy: I really think the acceptance has to do with how changeable our symptoms are. If we simply lost, once and for all, the use of a foot or a hand, we’d have an easier time of it. But as it is, most of us have some days when the foot or the hand is disabled — and then days or weeks when they’re not. And there’s no way to predict any of it.
I just wish I’d be able to put the bad flares on my calendar ahead of time. That way, I’d be able to schedule my hangovers for the same day, and life would be so much easier. 😉
I just can’t take winter any more, and we usually have pretty mild ones. We often don’t know how strong we really are until we have to push ourselves in bad situations.
I know what you mean, fatigue is some days worse than the pain of RA to me. You can temporarily block the pain out, there’s no blocking out any part of fatigue. 50 miles is a long way when you feel that way. Glad you made it ok.
Kim: You just about made me snort my coffee! Thanks for injecting a good dose of humor into this subject. heheheheheheh
Terry: Thanks for the kind words. You know how I kept myself awake for the drive home? Where we live in the Northern California mountains is a favorite tourist spot during harvest time and Christmas. I stayed awake by counting the cars headed back down the mountain with netted Christmas trees strapped, dead-deer-like, to their roofs. I passed 77 of them in the last 20 miles… ;o)
You have NOT lost your touch!
I must admit. I was measured for knee braces recently and I have been in deep depression ever since. I thought I was going in for little slip on things I could hide under my jeans or yoga pants. No such luck. I am basically one step up from Forrest Gump! I keep telling myself I don’t have to wear them in public, but just the idea of putting them on at all is so heartwrenching. Why are we all so scared of these things? I think as much as we hate the invisible part of our illness at times, we really rely on our “secret identities” when we need to make an impression.
But your post reminded me of my first year with RA. I too had no idea what was happening and I had just started a new job in a big city. I remember that by the time I finished my commute, I was done. My boss would yell at me for coming in late, and I couldn’t even muster any care. All I wanted to do was go back home and sleep. I did it for 3 months before I ended up in the hospital and they gave me a dose of reality. I look back now and wonder how on Earth I ever made it so long with no meds in days of 4 feet of snow with an hour long commute!!!
Weird what kind of pressure we put on ourselves, but not surprising anymore. I truly believe that this disease does not hit “type B” personalities. I have never met an RA that wasn’t Type A.
Wren – you most certainly have not lost your touch! I always look forward to your beautifully written posts.