1:53pm February 7, 2012

Reblog If

fuckthedisabled:

Seeing one of these pisses you off.

I get pissed off and freaked out by those for so many reasons.

It starts when they ask “Are you in any pain today?”

Uhhh… yeah. I’ve had severe chronic pain since the moment I connected to my body enough to feel it.

Then they bring out that damn thing.

And they want me to sit there and work out how to put my pain to a number. While being bombarded by new sensations. Under time pressure. I don’t usually know enough to work out how much pain I’m in until I’m lying down and it’s quiet. In other situations there’s just too many sensations to deal with, having to actually control body movements, it’s a mess and pain, even severe pain, is just one thing in that mess.

The worst question for me though is the third question “Where is the pain?”

I nearly always point to my face because trigeminal neuralgia is usually the worst pain I have. And because it’s so much easier than explaining the reality:

I also have some kind of neuropathic pain pretty much everywhere. It’s unclear whether it’s from nerve damage (or something about nerve development), or from central pain (where the pain gating system in the brain gets fucked up). It’s the earliest physical sensation I ever remember having. It never dropped below 6 until I got treatment in my early 20s.

All of my joints hurt. It’s not arthritis. The latest theory from doctors is it’s related to joint hypermobility.

Some joints hurt more than the rest because of various kinds of damage and stuff like that. Right hip, ankles, wrists, fingers, etc.

And something’s weird with my kneecaps. They do this slidey thing and then sharp pain happens.

I’ve got some kind of muscle and nerve misbehavior on the right side of my neck. The muscles spasm. Then I can get nerve pain and more spasms all the way down that arm.

If I bend my neck just wrong, my legs hurt.

There’s a spot right in the middle of my back. Pain tends to go either up or down my back from that point. Sometimes my neck and arms get involved. The doctor said it’s probably some kind of complex entanglement of muscles, nerves, and joints.

Any pain in my digestive system is not only amplified by nerve pain, but it spreads out in all directions. I frequently have pain in my esophagus, stomach, and intestines.

Sometimes I get pain when I breathe. This can be from lung stuff or when my other pain is so bad that any stimulus makes it worse.

When I walk, which isn’t much, I often get this nasty pain that starts near my ankles and shoots up my legs with every step. Even light ones.

Can get a similar (although I’m pretty sure the cause is very different) effect by typing. Sometimes even iPod typing.

I’ve got a damaged iliotibial band (no I didn’t know what it was when I first fell on it either – it’s some kind of thing that goes between the hip and knee). I fell on it. Possibly other injuries in the same area as well. This makes that entire area hurt with no good reason. I’m not physically capable of many of the things my physical therapist wanted me to do to fix it. (Plus I literally get nightmares about physical therapists, that doesn’t help.)

I’ve got all kinds of muscles that like to either hurt or behave really weirdly. Although the nerve pain can actually mask that for me sometimes.

The place where my jaw meets my skull is deformed. This does really painful things to my jaw. I’m “bad” about that too because I can’t handle the splint they want me to wear.

It’s easier to count the days when I don’t have migraines than days I do.

I also have something going on they only term “chronic daily headache”. Exactly what it says on the tin.

Due to my movement disorder and a muscle condition, my muscles can get either incredibly tense (while holding unnatural postures) or incredibly loose. Both of those cause pain.

I have post-cholecystectomy syndrome. Which means that the spot where my gallbladder used to be can hurt just as bad as gallbladder attacks did. Gallbladder attacks have been known to cause people to immediately sit down to write their wills.

As in… I have so many sources of pain in so many locations that I can easily forget what to call them even as I’m experiencing them.

Now… I’m autistic. I have great difficulty even feeling my body let alone localizing pain rapidly. My neuropathic pain makes it even harder to localize some kinds of pain. And you want me to sift through all of that and let you know where things hurt within the next minute or less, while in a high stimulation environment? You’ve got to be kidding.

And I know why they have to do this. And I know it’s vitally important they record this kind of information. But that doesn’t stop me from approaching this with a mixture of rage, guilt, and fear. (Guilt for pointing to my face and picking semi-random numbers between 4 and 6 on the pain chart thing instead of doing the impossible and giving them accurate information.)

And the only pain scale I’ve ever been able to deal with at all is The Comparative Pain Scale. It’s the chart with all the colors. I disregard everything else on the page because with some of their statements they’re really making asses of themselves. Like where they say pain patients should taper off our meds and tell family and friends to support our “healthy behavior” and not our “invalidism”. Fuck that part, pain isn’t a behavior disorder it’s pain, and leaving severe pain untreated is really dangerous to people’s health.

Notes: