attack_laurel (attack_laurel) wrote,

An open letter to people who do not know me.

This is what a Good Day[tm] looks like:

(One Thermacare or other brand heating patch, a Lidocaine patch cut in half - one on each forearm, five vicoprofen, two tramadol, and one extended release tramadol.)

On Good days, I am able to go to work, maybe do some shopping, carry things, open doors, open bottles and jars, and cook dinner without too much effort.  All I need is a mid-afternoon nap, and I'll be in okay shape all day.

This is what a Bad Day[tm] looks like:

(Two heating patches of some sort, one on each arm, two Lidocaine patches, one on each arm (double dose), six (max daily dose) to as many as eight vicoprofen  - really bad day! - four tramadol, and one extended release tramadol.)

On Bad days, I can't drive to work, can't lift anything too heavy, can't hold a book or use the computer for too long, or do much more than sit on the sofa with a pillow or two to prop me up.  I can, thankfully, sew, but I will need breaks.

Today is a Bad day.  I probably won't hit eight, but I might hit seven vicoprofen.

Useful Fact! - the pain pills do not ever get me high*, though sometimes they will make me a little sleepy.  They allow me to function.  I have tried everything else - believe me, there is no end to the helpful suggestions.  A subset of the "helpful" suggestions I get are proffered in a very disapproving tone, as if I just went for the drugs because I wanted an easy high, and if I really wanted to get better, I'd just try blah blah blah.  A lot are offered with a genuine desire to help, but you know what?

I already know what you're going to tell me to try.  I know what everyone's sister, Mom, cousin, hairdresser, or roommate from college tried, and how "it totes worked for them, have you thought of trying it?".  I get very tired during these conversations, because I've heard them again and again and again - I've had this condition for over eight years now - and it really comes off as rude.  I am amazed at the number of people who really want me to stop taking medication, as if it's a personal affront to them that I need painkillers.  For so long, the US has been fed the idea that drugs are only used to get high that we have disappeared the large numbers of people who need heavy-duty painkillers to kill the pain they experience - not just chronic sufferers like me, who are often accused of "faking it", but people with cancer, post-surgery pain, nerve damage. 

If you don't live with chronic - every day, every hour, sometimes or often bad enough to make you cry - pain, don't offer me advice.  You don't know.  You can't know - and I'm really glad for you.  No-one wants to wish days like this on anyone.  But please, don't presume you know better than me what works for me.  If you don't know me well - as in, you talk to me at least once a week, and we've known each other and socialized for years - don't, when I let you know about my pain, DON'T start offering advice, okay?  You don't know what I've done, what I've tried, or how it has/hasn't worked. In fact, don't do it to anyone, no matter if you think you know the secret to Life The Universe And Everything, don't offer it unless clearly asked, as in "do you know of any other possible theraputic options I might try?".

It is presumptious to do otherwise.  And on a day like today, I might not have the resources to be polite.

So, to forestall offers of advice, off the top of my head (I know there's more), here's what I've tried and rejected:

Physical therapy other than strength training to stop my muscles from atrophy
Hot baths
Warm compresses
OTC painkillers (Aleve, Tylenol, Advil, aspirin, Midol, Excedrin, etc.)
"Thinking positive"
Prescription Drugs other than the ones I am currently taking, including off-label use
Losing weight (no-one's told me to gain weight yet, but when I weighed 200lbs, I did not have pain!  Coincidence?  HmmMMMMM???)
"Being a better person" (because this condition is totes my fault, yes?)
Wrist braces (the pain is in the entire arm; today it is centering around my elbows and upper arms)
Going Vegetarian
Going Vegan
Fad diet (Atkins, etc.)
Glucosamine/other joint supplements
Herbal "supplements"
Homeopathy (do not get me started)
Massage (my insurance will no longer pay for therapeutic massage, and most spas cannot do deep tissue for the length of time I need)
Giving up sugar
Giving up alcohol (does anyone actually think I drink loads of vodka when I'm on heavy duty painkillers?!)
"Getting over it"

That last one is a killer - the implication is that I like the attention chronic pain brings me, and the "special treatment" I get, so I'm willingly in pain. 

All you need to know is that the people closest to me know I am in pain.  If you doubt me, or think I'm faking it for the attention, ask them - they've seen me cry.

Okay, need to stop now.  Hurty.

*Friends notice I get a bit more chatty when they kick in, but that's it.

Tags: disability, pain, state of the me
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