This morning I was reading a long and fascinating article in the New York Times, How Psychedelic Drugs Can Help Patients Face Death, by Lauren
Slater. As I read, I began to compare the fear that patients with terminal illnesses have of their impending deaths and how I feel these days about my rheumatoid arthritis. No, rheuma pain doesn’t begin to measure up to actually dying. I don’t mean to trivialize the concept. But as I read, my recent, distinct dis-ease with my own RA joint and bursitis pain suddenly clarified: I fear the return of the much worse, frequently disabling and mind-jarring pain I lived with during the first 10 years following my diagnosis. It tints my every waking moment with niggling worry.
Fear. Dictionary.com defines it as “a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined …” That’s clear enough. I’m experiencing that “distressing emotion” far more often than seems healthy.
Really, there’s nothing wrong with being afraid. Without fear, humankind wouldn’t have survived and I sure wouldn’t be around to write this today. It’s fear that compels us—involuntarily, more often than not—to run to safety, to take shelter. Fear compels us to be cautious. It urges us to prepare against future threats by creating safe havens or, perhaps, by arming ourselves in one way or another. And if we’re cornered, fear for our very lives can compel us to turn and fight savagely. It’s a useful, efficient, even life-saving emotion.
But fear does have its downsides, too. I live in constant fear of my returning rheuma pain. Every movement of my fingers reminds me I have the disease with small tweaks and larger, sharp stabs. Underneath those lays the mean, low, throbbing ache. Dealing with it—okay, trying to ignore it—can be exhausting all by itself. “Don’t dwell on it!” I mentally shout at myself. “Just move on!” And indeed, I do. I lift the coffeepot with both hands, the left protected with a potholder. I made a loop with a dish-towel and hung it on the refrigerator handle so I can slip my forearm through it and pull the door open that way, instead of with my hand. I’ve gotten so that I pause to think, even if it’s just a moment, before I do anything. Don’t dwell? Please.
To keep the pain tamped down and tolerable—so I can get on with the rest of my life—I take prescription painkillers. But even as I swallow them my mind flashes ahead involuntarily to wonder—fearfully—how I’ll manage when this current pain gets even worst and my painkillers don’t keep it under control anymore. I’m acutely aware that the drugs will lose more and more of their efficacy as my brain learns to override them. And even as I worry, I remind myself that I should be grateful for that. My pain has an ancient, instinctual, vital purpose: to help me survive. If these drugs totally masked it, I’d be in far worse shape than I am.
It’s funny. My family thinks I’m like old shoe-leather, scuffed but tough. Mom tells me about once a week that she doesn’t know how I do it, staying active and cheerful each day when I’m struggling with so much pain. I tell her I’m not really all that tough. If I didn’t have my pain meds I’d be whimpering damply and surely disabled to uselessness nearly every day. She frowns. She asks why “they”—my rheumatologist, actually—don’t give me medicines that work better. So I explain, once again, that “they’re” doing everything “they” can. That RA is incurable, and how our bodies learn to get around the various meds over and over again, always pushing us back to square one. “Well, you’re sure stronger than I am,” she says finally. “I don’t know how you do it.”
I smile and remind her just who my mother is, and how tough she’s always been. The branch doesn’t fall far from the tree.
Back to the point, though. I’m afraid of the rheuma and I’m afraid that my fear is beginning to disable me as much as the rheuma itself does. It keeps me cowering in place, too fearful to upset the status quo.
See, my pain ramped up so much after I started working out at the gym in February that now I’m afraid to go back for fear of making it even worse. But I’m also afraid (sigh) that I’m deceiving myself. My health depends on exercise. I need it.
It’s beneficial and, I’m beginning to understand, it’s as vital as eating, sleeping and breathing. It will strengthen my muscles so they can better support my joints. It helps my body to shore up and rebuild the bone that the osteoporosis is so busily undermining. Exercise burns a few calories, which can only be beneficial considering that I can’t seem to find the courage to give up peanut butter on my toast each morning. It increases my lung capacity and toughens my heart. It burns unneeded fat. It gets me out of my normal routine for an hour or so and puts me in contact with people outside my immediate family. At the gym, my fellow exercisers feel like a community, even if it’s a small one.
I need to overcome this creeping fear for all those reasons. But just as important, I need to overcome my fear of rheumatoid arthritis and the increased pain and disability it threatens me with. Those, I think, may be my lot no matter what I do, so it can only be to my advantage to face the future with a healthier body and mind.
Now I just need to figure out how. I’m still working on it.
RheumaBlog 
One of my tactics I used early on when I was overcome with this type of fear was going to a psychologist for awhile. It really helped a great deal and that person was trained in chronic illness (this is a must). I do get it with the gym and all but if it is causing you pain that lingers on and on then maybe the gym isn’t right for you just now. I do walks when I can but haven’t gotten any further into regular exercise. Without the advice of a trained professional I would be hesitant to just go work out on equipment. I truly hate to see you in this state and truly hope that in time the pain will just fade away and you will be able to get back to a better level. (((HUGS)))
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Thanks for the suggestions, Deb. I’m going to wait on the gym, I think, until after I can talk to my rheumatologist again, see if there’s a new direction we can go with treatment. As for the psychologist, while it’s also a good suggestion I’m not sure I’m low enough for that. We all have our rough patches. I’ve hit one of mine. It’s always a surprise to me how many times we have to work through the stages of grief with this disease. Hmmm. 😉
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I empathize with the fear of something worse. I’m very hard to get numb at the dentist office and I’m always terrified that there will be that one nerve that didn’t get completely dead. Only dentists are temporary and RA (like diamonds, true love, and herpes) is forever. Just one day at a time and do the best you can do that day. (You know that. You’ve taught a lot of people that.) In the meantime, hoping that the warmer spring/summer weather will help things. Take care of yourself.
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Carla, THANK you for the reminder to stay in the present moment. It really does no good to live vicariously in the … past, OR the future. I know that well, as you say, but it’s easy to forget even for someone who’s had rheuma for so very long. Odd, that.
I do hold out some hope as summer nears and the barometer finds a good spot to stay for a while. I think this is the first spring since I was diagnosed during which the weather has had such an overwhelmingly profound effect on my rheuma. Changeable, maddening disease!
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I’m so sorry you’re finding yourself so overwhelmed at the moment, Wren. You’ve given me such kind words of inspiration before and I’m not sure what I can offer back. I understand about the fear, it’s always in the back of my mind and it comes to the foreground when I have an increase in symptoms too. However you’re totally right that sometimes the fear becomes nearly as crippling because it sucks the joy out of every moment. I hope you have somebody to talk to about this, as I find sharing with a good friend can help tremendously. Is there any chance you can move your rheumatology appointment up a couple of months? I think you shouldn’t continue to wait and worry that it might get worse. Speak to your doctor if you can.
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Squirrel, you always comfort me. It’s good, somehow, to know that I’m not alone in being occasionally overwhelmed by my RA. I hope you’re feeling well and that life is treating you gently. 🙂
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Ah yes, that fear. Has found me, too. But somehow it never stays too long and endurance can be a surprising challenge with interesting observations.
Know this: you will shake it off again and again.
Wren, don’t stress yourself with gym exercises too much. What about a more gentle approach to movement? Tai Chi, Qi Gong, pilates? All of these you can do at home, there are good DVDs or youtube videos out there and you can go at your own pace and in your own comfortable place with the option to stop or adjust as you need/want. (And it’s much cheaper.)
Or try it in a small group or one to one to get you started. I would concentrate on gentle movements to support and increase flexibilty rather than muscle power, which is what the gyms are selling.
As for the weight loss: It’s a myth, exercise helps to prevent weight gain, but it has very little effect on weight loss. That has to do with insulin overload etc., but you know that.
Be gentle with your body. Hope you have a good day.
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Really interesting post. Fear is such a terrifying, crippling emotion but definitely one we all feel I think, especially with the pain. The gym helps me but I try not to go when I’m feeling a flare because I don’t want to create negative associations with it – maybe doing some gentle walks etc might help until things settle a little? Hope you feel a bit better soon
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So sorry to read that you are having a rough time right now. It seems a lot of RAers have had a difficult April. I was nodding in agreement with you about the fear of pain returning. You’re tough Wren … you can’t be a wimp and live with RA like you do. There are many positive things that come from a workout but if it is hurting you so badly right now, I would let it go. It has been a while since I have felt up to going back to the gym, I still walk everyday and do some light dumb bell exercises at home, but I have my own hesitation about going back. Just remember, you have to take care of yourself, some times this means backing off.
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Hi Wren, sorry things are so tough for you at the moment. (Just got back from hols so missed this at first!) It really is a tough dilemma – I sympathise but I’m pretty much in the same boat but within any willpower at all so I have no useful solutions to offer – just ‘virtual hugs’ and hopes that you feel much better soon! I do think it’s a good idea to talk to your rheumy about possibly different sorts of exercise you can do – or maybe find someone who really understands RA, which your trainer before clearly didn’t. (I remember he thought it was osteo for the first few weeks!)
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Wren, I’m so sorry it’s so very hard right now. I do understand the fear….I’m sitting in it as my blown ankle heals (I hope). This week, I saw my spine doctor and she was jumping up and down about needing to exercise. I pushed back a bit and pointed out that if I do too much, I’m sick, like my joints are on fire and feeling like I have the worst hangover of my life….for days. So, I think we’ve hit on a compromise. I’m to do NO MORE than 10 minutes of exercise–walking–at a pop. Try to do that every day, but keep it to 10 minutes at a pop. If I have no problems, try to increase the total per week, from 70 minutes to 90 (and then I’m good). If I have problems, knock it down to 7 minutes at a pop. The goal is to get 90 minutes of walking in per week, in a way that doesn’t kick off a joint flare.
Right now, my RA is very unstable, so I’m afraid of kicking off the flares from hell (at the lovely hours of 2 and 3 AM), as well as having an unstable joint blow out (see blown right ankle). But my gently insistent spine doc does have a point—I gotta watch my hearth and bone density. That said, our docs, physical therapists need to be creative when it comes to coaching RA patients. We can’t *DO* exercise like everyone else. There are some important disabling downsides to what they are recommending.
So here’s a hug as you are sorting things out. This crap is *NOT* for sissies.
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