Tape a Lego to the Bottom of Your Foot

I’m not going to argue the opioid crisis. I would never tell someone suffering from chronic pain that they shouldn’t take so and such anything that may help them, physiologically or psychologically. Everyone has to make that choice, preferably with the help of a competent doctor who has done the research to know what will actually touch the constant fibro pain – if anything. I’ve made the choice to give up on pain meds. I’ve made the decision that my brain functions better under the stress of constant pain than it does under the numbing influence of opioids and that a clear brain is necessary for the quality of life I choose. My choice. 

A few days ago I was distressed to see that articles are circulating about “pain acceptance,” that doctors are advocating “pain acceptance.” I’m not sure what “pain acceptance” is supposed to be. I come as close as possible to “accepting” my chronic pain as I can, simply by making choices to move when I hurt and to stay away from drugs, but I don’t accept my pain.

The biggest problem with advocating for “pain acceptance” is that it opens the way to missing diagnoses for things that can be cured or alleviated. I’ve told the story before about my massive pulmonary embolism, walking into a doctor’s office saying I think I have a pulmonary embolism, explaining the shortness of breath, the stabbing pains in my side, having the doctor look at “fibromyalgia” in my medical record (next to a blood clot diagnosis) and saying, “I see you have fibromyalgia.” He sent me home. Three days later I woke up on the bathroom floor in the midst of a “near fatal episode.”

There can be no pain acceptance without due diligence, and if doctors are really pushing patients off pain meds and telling them they need to “accept” their pain, they need to be prepared to listen to patients when they have new symptoms and make sure that the patient is still “healthy” even if in pain.

I have an understanding with my doctors – I don’t see them a lot, I don’t contact them, unless it’s something new. Usually I only see him (or her, I have residents for my doctor and they switch out every three years) once a year for my yearly, and at that time, I’ll choose what I’m concerned about. Right now I’m working on unusual, ongoing abdominal pains. He’s putting me through tests for celiac, ulcer, etc, and has not ruled out an endoscopy to make sure there isn’t cancer because there is cancer that runs in my family. It’s a balancing act for us, and I think it helps that I’ve refused meds that I can’t take anyway. There is no doubt in the doctor’s mind why I’m there and what I want, and I reiterate my purpose in talking to him all the time: I know any testing is probably going to come back negative, but I need to do my due diligence. Doctors understand that. Some are better than others in following up and ordering tests that would allow me to do that due diligence, but they understand and accept that concept. That’s “pain acceptance” with due diligence.

Where I see more of a push for “pain acceptance” is from society as a whole. People with chronic pain are the source of the opioid crisis, no? No, but I’m not going there. A friend of mine recently started having knee trouble. He, a person who has never made me feel uncomfortable about fibro, said that he was understanding better what chronic pain is like and that he sort of dismissed it before. I would never wish chronic pain on anyone (although sometimes I think doctors should have a chronic disorder before they can become doctors), but it’s really the only way people can fully understand. I look normal, I act normal, people tell me all the time they can’t tell that I’m in pain. I’m glad of that, but it means they don’t always understand when I do need that time to rejuvenate, even the people I’m closest to.

So maybe for awhile lawmakers and the healthy people who look sideways at those of us who have to think about every movement we make, maybe they should just duct tape a Lego piece to the bottom of their feet and tell them they have to do everything everyone else can do. Oh, you can take some ibuprofen – oh wait, that gave you a bit of an ulcer, try naproxen or Tylenol. What do you mean Tylenol doesn’t make a difference? Just take more. Just get used to it…

Living with Hypersensitivity

A typical description of fibromyalgia: Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep impairment, and cognitive dysfunction. What this description doesn’t do, however, is explain that all of these characteristics of fibro can really be boiled down to hypersensitivity. Right now I’m sitting in Caribou Coffee (for those of you not from Minnesota, it’s a great coffee shop, filled with luscious smells and students studying, like Starbucks but not). The sound of the coffee bean grinder and the lathering machine thingy sound like they’re hitting me on the side of my head. There’s a Christmas “carol” playing on the overhead speaker – sounds like someone is beating a cat – I think it’s Mariah Carey having a conniption (sorry to any Mariah Carey fans out there), There are people talking quietly but occasionally breaking out it laughter. The laughter pierces my right eardrum. The mild dullness of hearing in my left ear helps that side. The carpeting on the floor is an abstract rendering of tree limbs. Mixed with another section of hardwood floors, a brick fireplace, and walls painted all different colors (nice colors, just lots of them), the surroundings make me feel a little off-balance. The lighting, however, is dim, except what hits off my little laptop and bounces back to hit between my eyes. I had to move to keep out of the sun streaming in the window. Beep beep beep behind the counter, people wandering in and out, constant motion, constant noise, constant sensation. Add to that the “usual” sensations: lower and mid back pain, aching ankles and hands, neck and shoulders, arms and legs, all the usual stuff including eyes that won’t properly focus. This is one of my favorite places, Caribou Coffee. I love the atmosphere, the kids studying, the forbidden peppermint hot dark chocolate.

It’s a good place to think and settle in to writing a little bit. I plug Pandora into my ears, breathe in the caffeine smells, savor the hot chocolate (yep, I’ll feel that later) and settle in. I want to be here, so I’m here. It hurts, it’s exhausting, I’ll need to hibernate when I get home with peace and quiet and calm environment (if my puppy allows it). I want to be here, so I’m here, but I’ll only be here an hour or so, and then I can retreat.

At work, it’s much the same, except I am there nine hours total. The environment is completely different from the Caribou Coffee environment, but the effects are all the same. The lunch hour doesn’t really give me the hibernation that I usually need by midday. Venturing out of my office for lunch and making my way through crowds and noise to find food is completely overwhelming and anxiety-provoking. By the end of the day, I’m shattered. Work is one of my favorite places, the people are some of my favorite people. I want to be there, so I’m there, everyday. It would break my heart if I couldn’t make it to work.

Other “normal” people don’t hear, see, or feel the same way in these environments. They don’t realize their laughter is causing actual physical pain or that talking incessantly is causing someone anxiety. People at work don’t realize not everyone can concentrate with glaring fluorescent lights. They don’t understand that our bodies are under siege, that we feel and react more to smaller stimuli. Doctors have documented that difference, and they don’t understand how we feel more with less either. We do, though, so may as well settle in and go the places we want to go, do the things we want to do, and hibernate when we need to. I don’t expect people to understand, and honestly, I prefer they don’t try. Just let me do what I need to do….