"If you're not in pain today, we can go shopping," said my friend.
"If you're waiting for me to be out of pain before we go shopping," I said, "you can wait fifty years and take my ashes."
I live with chronic pain. I have orthopedic issues and fibromyalgia and dysmenorrhea. I look just fine, walking with a slight limp on occasion. But the invisible problem of pain means I can't hold a regular job.
And because of the problems with the way we treat pain, my encounters with the medical profession are fraught with anxiety; how can I present myself so I don't look like someone who abuses prescription medications? How do I explain that I know my pains and this is a new one? How do I get taken seriously?
Pain is the number one reason people go to the doctor. But people with chronic pain states have to use the doctor as only part of their pain management strategies. It's not just that pain hurts, pain eats your brain.
Pain causes a number of different effects. Anxiety and depression are common, and understandable. I am always anxious when I take on a commitment of any sort, even accepting an invitation two weeks ahead of time. I don't know how I'll feel that day. If the commitment involves any sustained physical activity, especially weightbearing, I might have to cancel.
Acute pain is more bearable because you know it will stop. But once you get a diagnosis of chronic pain, you realize that you are going to hurt like this for the foreseeable future. I will wake up bruised, with a spike through my instep, for the rest of my life. I look at people around me who can just walk here or there to pick up some bread or down to the corner bar, who talk about hiking for fun, and it makes me sad. I used to be very active. Now, I can't reliably walk a half-mile. No wonder I work hard to stave off depression.
One of the big questions that is often asked in fibromyalgia is whether and how much depression is a part of it. I suspect that since fibromyalgia is probably not one disease, the answer to that is that it depends on the person. I am pretty damn prone to getting depressed when I hurt to the point that eating is hard work, when I can't muster the energy to make myself hurt any more than the bare minimum involved in getting dressed and staring at a TV, and when I see things going by or mentioned that I could do, loved to do, if only I wasn't hurting so much. Relieve my pain, relieve my depression.
I relieve the pain in a lot of ways. I don't have as great an ability to cope with things, so getting enough good sleep and eating the right foods for me on time are rather important. In fibromyalgia, not moving makes you hurt more because your muscles weaken. Despite the pain, the solution is exercise. I like Iyengar yoga. Even when my hip and sacral trigger points are so painful that I can't lie on the floor to do any of the lying poses, I do them on the bed, and that is that much, at least. As the foot pain is increased by weightbearing, keeping my weight moving downwards is only sensible. I have to wear the right sort of shoes for my foot, and even when barefoot I usually have an arch support on. I try to interpose sitting times with the standing. If I'm doing something that takes a long period of standing, I try to figure out how to do it sitting. I fold laundry seated, and am working out how to wash dishes seated. I often cook seated. But with all this, I still need some outside help to manage the pain.
I've come to accept that I have no decent quality of life if unmedicated. It is not that the pain is so acutely awful but rather that it is constant and unrelenting, and understandably one gets a little suicidal feeling when one stares ahead to long years of misery. I don't want to get high; life is too fun for passing it mindlessly. I just want the pain to back off enough that I can live.
That took some sorting around. I am not quite controlled fully on OTC medication, and long-term high-dose use of ibuprofen is bad for my stomach. Better a small dose of an opiate than burning out my stomach lining, my doctor said, and I agree. I tried Vicodin, but found that while it works, the side effects made it unliveable. I am on Tramadol now, and am prescribed 50 milligrams every 4-6 hours. In practice, it's more like 50 milligrams every eight, but if I've been on my feet extra or am on the bad week of the month, I'm glad to be able to step up to the higher dosage without worrying that I'm overdosing or running out of pills.
The other part of it has been working out that the opiate can't do it all itself. When the pain is largely due to viseral muscle spasms, the answer is a hot bath and a muscle relaxant. When I'm having specifically nerve pain in my foot, I'll hook the TENS unit up to my calf so as to blanket the foot dermatomes, and let that deal with it.
But the problem is always the cost. I don't have any reliable income at the moment, and the electrode pads for the TENS unit and the battery for it wear out. I have to see the doctor every three months for my prescriptions to be given me, and of course those aren't free either. So sometimes, like right now, I sit and try not to cry and remind myself that tomorrow is another day, and maybe something will change.