I have chronic pain. I will spare you the details, but some days everything hurts and I’m crushed under a wall of fatigue. I am very familiar with the altered state of a migraine where a world of agony trickles though an aura of spacey sensitivity. My joints radiate pain, feeling like a swarm of bees is living in my connective tissue. Many days my hands/feet/knees/hips/back hurt too much. Pick one or more.
I’ve seen a handful of doctors, including one guy who wanted to do surgery, then changed his mind a few months later. I’ve been on a whole range of medications, which only numbed my mind and rotted my stomach. I’ve had a bunch of tests, where they run an electrical current through my nerves and lots where they draw blood. In one blood test I had a ‘weakly positive rheumatoid factor’. According to another doctor, I don’t have arthritis. I just couldn’t get out of bed by myself for 6 weeks and my knees popped, grinded and buckled with every step. I had to soak my legs in a hot bath every morning to be able to walk to the kitchen.
That’s not normal. Just sayin’.
Googling my symptoms leads me to a weird and wonderful array of autoimmune diseases.
Which I don’t have, according to my doctor. I just have pain.
Why can’t I get a decent diagnosis?
Pain itself. When you are in pain and exhausted you are certainly not hopping in the car and trudging off to the doctor’s office, where you wait over an hour to be seen for a few minutes to plead your case. Instead, I take some over the counter medication and hide at home. I rest in bed, and try to sleep it off.
I don’t think my doctor believes me anyway. That happened once before, with another doctor long ago. I complained of serious pelvic pain. She brushed me off. I changed doctors and was immediately referred for a laproscopy, where the surgeon lasered out rogue endometrial tissue that had filled my pelvic cavity.
That’s the nature of pain. We cannot experience another’s pain, and tend to dismiss the pain of others. Suck it up, get over it, stop being such a baby. Exercise, eat better, and get some fresh air.
We do not see the impact pain has on the life of the individual and those around them. They are absent from school, work, and life.
I’m writing this post in bed, propped up by pillows, with the baby sleeping beside me. Last night I had three kids piled into my bed as we read bedtime stories together, a tradition we’ve had for five years now. Children giggled and tickled and argued over which story to read. Tonight Hubby took the other two kids to read stories in their room together. I’m lying down, resting, in pain. It is silent in my room.
Hubby explained to my son, Mr. Sensitive, “Shhh, Mommy needs to rest, her back hurts.”
That’s how I grew up – with my own mother lying down, resting because her back hurt. I now know my mom has chronic migraines, fibromyalgia and a few different types of arthritis. What I remember is spending long afternoons on my own, watching TV or reading books in a very quiet house.
Pain – leads to withdrawal from school, work or life.
That’s what really hurts.