We are all born with an innate ability to withstand pain. Some of us are born with more "capacity" to withstand pain than others. Chronic pain effects us differently than acute pain.
The question I ask myself, what "switches" me over from having pain I can tolerate and work with and deal with to having pain that makes me shake, get "shockey", unable to think? It literally can feel like one minute I am dealing with pain just fine and the next I am past my limit. I don't know how to plan for this, how to prevent it, or when in the midst of it I sometimes can't even think of anything but the pain.
I have decided that I have a cup, like a teacup, that holds my pain.
If everything is going fine, I don't overdo anything, The Headache behaves, The Legs are OK, The Belly rumbles onward, I am able to sleep and rest, the pain drips into the teacup but then gets emptied every day, and I start off the next day with an empty cup ready to fill it up again.
If something happens, and I have acute pain (like The Headache) instead of dripping pain into my cup, it POURS into the cup in great gushes. If I medicate, or get my stimulator set just right, or am able to sleep (or maybe combinations of all three) the gushing stops and the teacup holds at that level, and if I'm lucky empties. If I can't stop the gushing, the teacup overflows and I am at the point I can't walk, talk, or think from pain. If the teacup just holds and doesn't empty, I am still at risk of overflowing it, since now I am working with a cup that is half full, three quarters full, or to the brim instead of the nice empty cup.
If the cup doesn't get emptied, and the pain just drips onward with my normal levels of pain (instead of gushing full with acute pain) I come to a tipping point. One more drop, and it is overfull. Being overfull, my body doesn't seem to care if the extra drop of pain is from a too tight blood pressure cuff, a needle stick trying to start an IV, or an extra bright light boring into my brain - it just starts the same shaking, not able to think, freezing cold reaction it does when I have great gushing extreme levels of pain. The only difference seems to be that I am not as agitated as I am when the pain comes too quickly and overflows my cup too fast. Perhaps my body and mind has had more time to adjust? Or the physical shock is not as great? Just not sure.
My PCP tells me that allowing my pain to stay uncontrolled puts me at risk for "overflowing my cup o' pain". Not enough sleep puts me at risk. Doing too much without controlling the pain puts me at risk. He gives me plenty of medication so I CAN control my pain. He worries that I WON'T control my pain.
Here is my dilemma: I am not afraid of addiction, but I fear not being able to "function" on the pain medication. I am sleepy. I don't think right. I have poor impulse control. I have poor balance. My nausea gets worse. I won't drive because of these side effects. I find it difficult to be productive because of these side effects. I like being productive. What to do?
I can't function at all when my cup o' pain overflows, and I can't function well with the pain medication. Logically I know the answer. It is the same answer my PCP tells me. Not functioning at all is not acceptable. Not functioning well is not optimal, but it is better than not functioning at all. I probably am not functioning with the pain as well as I imagine, because the "drip drip drip" into the teacup does take a toll.
I hate having to change, having to admit I am not in control, having to deal with this. I'm a big wuss....and a complainer....and a griper. Determining this weekend that next year will not be the same as this year. I will take a hard look at what works, and what gains the most ability verses the least disability, and I will make permanent changes. I am positive that I will continue to endure and there is either going to be a way to upgrade my teacup o' pain to a bucket, or a way to keep that cup empty more often.
Here are some links to more information on Chronic Pain, Chronic Pain Syndromes, and Pain Management (I hope none of them are wackydoodles - I visited all the websites but didn't research their bonafides):
American Chronic Pain Association
International Association for the Study of Pain
Alliance of State Pain Initiatives
American Fibromyalgia Syndrome Association
American Headache Society
American Pain Foundation
Chronic Pain Association of Canada
The Endometriosis Association
The Facial Pain Association
International Pelvic Pain Association
National Headache Foundation
National Pain Foundation
The Reflex Sympathetic Dystrophy Association
Next year will be better, tomorrow will be better - there is always tomorrow! (PS I am thinking of capitalizing on the poor impulse control while on pain medication - what kind of whacky behavior can I just have fun doing and THEN blame on the medication? Hmmmmmmm....)
I find medicated blogging returns interesting results. :)
ReplyDeleteI like your teacup metaphor, it goes well with the spoon theory, too!
Steph: Well that explains a lot - just kiddin!!!
ReplyDelete:)
I thought maybe I could bail out my teacup with my spoons, but I used up my spoons too fast that way!
Lately I feel like my teacup is shrinking. I thinking I'm just getting wimpy.
ReplyDeleteI'm exactly like you when it comes to pain pills. They ruin my quality of life so I resist them. In my case I really haven't found anything that gives quality relief so why would I compromise my quality of life. You at least are used to what the quality of life with the pain is.
This is really messed up. It's no wonder people who don't have chronic pain don't understand us. It shouldn't make so much sense to us :)
Kristin: For me pain pills just don't kill the severe pain (thus the occipital stimulator). The pain docs that put me in the ONS program understood perfectly when I said dilaudid and fentanyl (the two strongest pain killers I know) just took the edge off when I was at 10++ on the pain scale, maybe taking me down to a 9.9. Some pain just does not respond to drugs.
ReplyDeleteNot sure if our cups get smaller or they just never get emptied out!!!
I was the same WNPP - none of the uber-strength narcotic pain relievers even touched the pain. The worst times were those when I had waited at the ER for hours with 10+ pain, only to be given inadequate amounts of pain meds (because I'm only 5 feet tall and weigh about 115 lbs, they assume I don't need much medication). When they checked me to see if the pain had decreased, if the answer was no, I instantly became - in their eyes - a drug-seeking patient who must be discharged asap.
ReplyDeleteI stopped going to ER.
I have a similar "tipping point" with pain. I've come to accept that I will now and likely always have 'some' degree of pain. Honestly, it doesn't register with me psychologically until it hits 7 or more. Up to that point, it's just life as usual.
When I get over the 9/10 point, I find some ice and a dark space. It's the best I can do. I really, really wish I could try the ONS, but I just can't afford it. I found one doc in Ontario who does the procedure, but he wants his patients within a one hour drive of his hospital, as it is still in the testing stage at that hospital, and he needs to record every issue/problem/success as it happens. I'm at least two or more hours away - and that's only if I fly there.
So - I wait until my cup runneth over, then I call my massage therapist (who now makes house calls as needed. Yes, I love her) and find some ice.
Sue: Totally understand. I have to be at the total melt down point to even anticipate an ER visit - then I can't drive myself there becuase I waited too long. Sigh.
ReplyDeleteI have been able to drop back the number of visits to the ER to once about every 2 months because of the ONS. For some reason, they take me more seriously now I have an implant for pain. Duh! Does an implant make it more "real"?
Thank heaven for ice packs! I use 3-4 at a time. I don't have the luxury of an on-call massage therapist but it sounds lovely.
Is there a way to temporarily live near the hospital? Or to be totally pitiful and get them to do it anyway?? I certainly was!
I had it done all the way in Cleveland which is about 850 miles away, 13 hour drive or 4 hours to the airport, and an hour flying. If I hadn't been in such unsupportable pain I am sure I wouldn't have gotten a stimulator. Wasn't easy but it was doable. There was NO ONE in my entire state who did these.
I like your teacup analogy! It is a very hard thing to keep balanced. I think perhaps there is a teacup full of brain tea and medication empties the cup, but pain empties the cup too and it's hard to tell which is working at a faster rate! I try to refrain from meds until later in the day, it can mean the mornings are more painful, but I find I get a little bit more brain power this way :)
ReplyDeleteRellacafa:
ReplyDeleteMaybe the brain cup and the pain cup are connected by the same hose!!! Of course the argument can be made that I was perhaps shorted on the brain cup some days!!! Maybe a demitasse cup of brains???
Big fan of the tea cup too :)
ReplyDeleteI hate the loss of control I've felt over the years living with pain. This is all so hard - will it ever get easier?
Migrainista: It just seems to get harder and more complex the older I get - maybe because now I have three or four spigots of pain instead of just one! And somehow my teacups didn't multiply at the same rate....
ReplyDeleteThe control seems to be on Pain's side not ours. Not a fan of jumping to Pain's tune, but it certainly has a way of getting my attention!