Though most people understand, at least conceptually, what I mean when I say I’m in pain, I know they don’t get the specifics. I think that’s why I often make comparisons in a lot of what I write between pain & grief. There are so many variants, volumes, “tones of voice,” nuances, degrees, shades and textures. Circumstances play a role as well, exacerbating the conditions of both pain and grief.
I say “conditions” for lack of a better word. Pain and grief overlap, share space. They might even do more than that. In my life they seem to be permanently tangled, inseparable. Don’t they often sing their dirges and laments with the same voice, from the same locus of loss and pleading?
You could put a dozen – or for that matter, a hundred or a thousand – people with multiple sclerosis together and no two would have the same set of symptoms or suffer those symptoms to the same degree. Pain is the wild card, in that its source can be a myriad of things. MS is unique in each individual, which is why each person’s pain is equally unique.
In the beginning of my disease-course most of the pain I experienced was from migraine headaches. There’s also the kind of electrified tingling and sharp stabby pain that happens when your formerly asleep foot or leg begins to wake up. Except that my limbs just go to sleep of their own accord, without the kind of compression or being too long in one position that causes that sensation in the average person. The MS variety of this pins and needles pain is like that asleep foot’s waking-up pain, but exponentially squared.
It should be said that a lot of people with MS have no pain, or at least that’s what I’m told. In fact when I was going from doctor to doctor back in the early to mid 90s they kept telling me pain was not part of the “clinical picture of MS.” But now we all know better. Which is to say that the medical community is finally willing to acknowledge what many MS patients have long known, only too well.
Pain in MS patients comes not just from the symptoms of the disease itself but also from the treatments. Corticosteroids, for example, are used to relieve inflammation, which supposedly lessens the duration and severity of an exacerbation. But corticosteroids wear away at all the good cushiony stuff between joints. Which is why, after many IV steroid treatments over the years, I have crazy-bad hip pain. It’s similar in nature to that of arthritis, but worse. The medical term is avascular necrosis. I have both arthritis and avascular necrosis. A couple of years ago these were evident only in my hips on x-rays, but now the deterioration from both conditions is visible in my knees, shoulders and elbows. I also have severe arthritis in my hands, most especially in the lower thumb joints, where thumbs connect to wrists.
I’ve talked about the effects of gastroparesis before (paralysis of the vagus nerve, which controls digestion). That pain and nausea is like being trapped on an automated unmerry-go-round with no way to get off the ride. This source of pain, alone, can take me to my knees, to the very floor, wishing to fall below it, in hopes the fear of falling might – for a brief time – make me forget the pain in my gut.
Unless you’ve had to deal with pain, serious pain, day-in and day-out, I’m not sure that I can describe accurately the toll that it takes. It moves far beyond the physical. Into the mind and spirit. It can be all encompassing. What I’ve been trying to understand of late is how better to handle pain. How to deal with the grief of it. How to fight the exhaustion of carrying it. Constantly. Because it’s getting too heavy. And yet there’s no way to put it down. No way to let go of it.
This forever-and-always burden of pain manifests in other ways, too. As fatigue. Mournful, inextricable, undeniable, crushing. What I’m trying to say – and I’m sure I’m bungling this explanation – is that while, yes, the pain itself is a challenge to endure, it is the ongoingness of it, the days stacked onto nights and more days and longer nights, and on and on of it. The no end in sight, rest of my life-ness of it. This is where pain and fatigue become the two-headed beast that tortures me.
The Bobbsey-twin combo-creature of Pain and Fatigues, more than anything, is my nemesis in a life with MS.
This brand of pain-induced fatigue is not really discussed, much less understood. As far as I’ve been able to tell there aren’t even any studies going on about fatigue, no researchers working on ways to alleviate it, to treat it. Whenever I’ve listed fatigue as one of my chief complaints to doctors and nurses, they either fail to acknowledge it, or seem to have heard something else in its place. The most frequent follow-up comment – if there ever is one – is usually along the lines of, “So you’re you’re experiencing some depression?”
Which tells me, flat-out, they haven’t the slightest notion what I’m talking about.
Fatigue is barely discussed by the medical community at all. There is a mysterious unspoken-ness, an almost-taboo-ness. Even among us, the patients suffering, fatigue is handled like a dirty little secret. This is due in large part to the way the healthcare profession deals with fatigue–or doesn’t, to be accurate–but also because we don’t know how to handle talking about it either. We have no simple, easy way to convey the full truth of it, the too-layerd and knotted complexity of it. We aren’t sure how to express the extent of how alone and helpless we feel in the face of fatigue, because we’re afraid of sounding like we’re anxious or depressed.
I’m willing to bet that what is often diagnosed as anxiety and/or depression in those suffering chronic pain is actually fatigue of this nature. Which leads me to wonder how many people accept misdiagnoses of mental health when what they’re actually combating is this burden of through-going pain that has rooted itself, fatiguing mind, body and spirit–ad infinitum.
Every now and then I come across someone with illness and pain in her life–lupus, lyme, fibromyalgia, cancer–and she will share with me that she “gets it.” I recognize it in her eyes, hear the tell-tale sound of it in her voice–that she understands fatigue, knows it the way I know it. A relief of celebratory proportion follows. The feeling almost causes me to levitate; a little happy-dance ripples through me. Because to have this kind of moment with another person–to stand together and know that she knows about the kind of fatigue that comes of bearing too much pain for too long–that makes all the difference in the world to me, right then, right there, in that no-longer-alone place. Being in the company of that one other person who truly understands is, for a few breaths and heartbeats of time, as good as having someone carry half the load of that pain and fatigue heaviness.
I’m not glad the other person’s in pain, of course. Just relieved, even joyful, to not be alone for a little while, to not be burdened with the full dead-weight of that beast on my back. The torturer so few people in my everyday life recognize or even acknowledge.
“Fatigue.” I hate the word; it sounds so damn benign. The sound of it has no abrasive qualities. No teeth. Not even a hint of stench or sting. Still, there exists no better word for what people like me feel. Which is why it’s so hard to explain to others who don’t know firsthand what’s happening. Which is why pain-compounded illness is isolating. And why it can, and often does, lead to actual depression.
These last few days, especially post-marathon, have been quite lonesome. The experience of being weighed down and mired by pain, drowning in the utter exhaustion of it, and not even being able to express clearly what’s going on–by god, it’s infuriating. But not in that way of anger that can sometimes make you feel empowered–quite the opposite. This too much pain rolled over and over like a tumbleweed into extraordinary fatigue makes me feel completely powerless, even helpless.
I hate not being able to adequately explain the experience, not having a way to say it straight out and have it be understood–by medical professionals, colleagues, friends, loved ones. I hate not being able to have them say back to me, with authority and empathy, Oh, I know what that’s like–and be able to believe them. I feel invisible in my pain and fatigue. I feel as if the heaviness and grief of that combination goes unnoticed. I feel alone with the heaviness of it. If feel overwhelmed by it.
So today I had to talk about it. I had to put these words on the page, and then summon the courage to press that little ovoid blue button to Publish. Even though I know you probably won’t understand. Even though I know you might judge me as overly emotional, anxious or depressed, a bit of a drama queen and feeling sorry for myself. I’m willing to risk all that, to risk whatever conclusion you readers might draw. Because sometimes saying something “out loud”–that very action–makes it more real, allows me to feel just enough less-alone to get me through.
Thanks for “listening,” good readers. Sometimes being heard is the next best thing to being understood.
The writing of this post was a bonza exercise in venting for me, but I realize the reading of it might be a source of bummer-osity for you. So here’s a photo of Luke from our trip to NYC for the marathon. If you’re a regular traveler to these here blog-parts, you already know how much he adores the flora and fauna of Central Park. I’m sure his obvious giddiness with wide-open grassy space, crisp fallen leaves and repeatedly-thrown tennis ball will counteract any potentially downer vibes from this post!
I only have two weeks left to reach my fundraising goal and I really, really need your help!