Coping with Chronic Illness

Sharing your pain with laminated pain charts.

From beingmex3.tumblr.com:

This is what i did today. I made charts and laminated them so i can color each day what hurts and what the pain level is.

Its hanging on my pantry so my family can see it and i dont have to constantly be saying what hurts or saying i can do things. They can look at the chart. :P

I think this is absolutely brilliant. What a great way to communicate your pain levels and ability without having to constantly talk about it and be reminded of it. I think it would also help with any issues of giving or getting too much or too little assistance.

In my ideal world this would be computer-based so I could simply email it to my husband every day instead of my usual "this is how it is, fyi" email. I'd also like to be able to save the data for tracking purposes just in case it's needed.

Post-pain med pain scale.

This pain scale was created by Paula on the 'Clouds' message board.

Please note: This is the pain level that is experienced AFTER taking the daily medication prescribed by your doctor.

0 Pain free.

1 Very minor annoyance - mild aches to some parts of the body. No pain medication needed.

2 Minor annoyance- dull aches to some parts of the body. No pain medication needed.

3 Annoying enough to be distracting. Over-the-counter pain relievers (such as Naproxen or topical treatments such as Arthritis Pain relieving rubs) take care of it.

4 Can be ignored if you are really involved in your work, but still distracting. Over-the-counter pain relievers remove pain for 3-4 hours.

5 Can’t be ignored for more than 30 minutes. Over-the-counter pain relievers help somewhat (bring pain level from 5 to a 3 or 4) with pain for 3-4 hours.

6 Can’t be ignored for any length of time but you can still go to work and participate in social activities. Stronger painkillers (such as Ultram) relieve pain for 3-4 hours.

7 Makes it difficult to concentrate, interferes with sleep. You can still function with effort. Stronger painkillers (such as Ultram) are only partially effective. (Stronger pain killers bring pain from a 7 to a 4-6 level.)

8 Physical activity severely limited. You can read and converse with effort. Stronger painkillers (such as Ultram) are not effective. (Narcotic painkillers do bring this pain down to a level 3 or lower level.)

9 Non functional for all practical purposes. Cannot concentrate. Physical activity halted. Panic sets in. (Narcotic painkillers bring the pain level down from 9 to the 4-6 level.)

10 Totally non-functional. Unable to speak. Crying out or moaning uncontrollably - near delirium.

How do you rate your pain?

Or how about this fantastically funny pain chart from from Hyperbole and a Half:

L-O-C-A-T-E

L is for location of the pain.

O is for other symptoms like weakness or lack of sleep.

C is for the character of the pain. Describe if it’s sharp, burning, tingling, etc.

A is for what aggravates (worsens) or alleviates (reduces) the pain.

T is for the timing. How long does the pain lasts, is a constant or occasional?

E is for the environment. Where does the pain occur? Is it while working, at home or while doing a particular activity?

[Possibilism]

My benchmark of pain.

The point of this entry is that pain is not a “thing” you can treat in a definitive fashion. It’s your brain’s response to something that’s happening to you. There are three main parts to it – the stimulus, how your brain reacts to the stimulus, and how you (meaning you the individual, the personality, the consciousness) react to how your brain reacts to the stimulus. [What is Pain?]

With me, the stimulus happens when my nerves misfire, which is what PHN makes them do. How my brain and I react to it is different now than it was when I first came down with this. PHN pain, at least certain kinds of it, are my new benchmark for measuring other types of pain.

I was recently asked to measure a particular pain I had and before I answered with a number between one and ten on the pain scale I stopped and thought to myself "how does this pain measure against PHN?" It hurt less, so instead of answering "six," I said "four." I wondered after if I gave the right answer. Did my answer lead the doctors to believe the condition wasn't serious? Because it was a great deal of pain, but compared to what I live with every single day it was bearable.

I'm careful when I talk about pain levels when at the doctor's. Routinely, at the beginning of every appointment with every doctor I am asked "are you in any pain today?" I answer yes, because I am, and I tell them my pain level. Then I clarify by saying "I have a chronic pain condition, I'm in pain every day." It's in my records, they should know, but I'm afraid if I don't say that they'll think there's something seriously wrong to be dealt with right at that very minute. (Since my gynecologist, for example, can't help with my PHN, I really don't want to waste that kind of time.) But I also worry that by not wanting to discuss it or by saying it with a smile that my pain will be dismissed as being less than it is.

I don't talk about my pain often, outside of the doctor's. I try to not weep over it, or rage, or do anything that will upset myself. That isn't because I'm so stoic and so able to handle the pain. It's because I don't see the sense in getting myself upset because there is nothing I can do about this that I'm not already doing. All getting upset will do is cause my nerves to fire more and put me in more pain and, frankly, I'll pass on that. Sometimes, mind, I weep and rage despite my best intentions.

Yeah, it hurts.