Last night I stumbled upon a post on Pinterest that made me cry. It made me cry because it is fantastic, so it was tears due to a display of true love. It was written by a guy who has been married to his wife for almost 14 years, and his wife suffers from chronic pain. He gets it. He gets it in a way I never thought anyone other than the sufferer could get it. The article gave me a lot of hope: It just takes time and patience but the two of us (Dan and me) will learn to conquer this together.
The article isn’t just for spouses. Really, it isn’t. It has perfect tips for any support person. It works the same if the roles are reversed (husband has chronic pain), if it’s a parent/child relationship (either direction), if you’re the best friend of a single friend, etc. Anyone that has to take a primary, or even secondary, caretaker role can benefit from reading this article.
Please read the article itself for the full impact, but I’m going to comment on a few pieces below.
First, I love his use of “pain storm.” There really is no better description of a flare that I have EVER heard. “Flare” sounds so trivial, while “pain storm” really gives outsiders the perspective they need. It’s much easier to have sympathy when you are imagining a raging hurricane or horrible thunderstorm taking place inside their body, instead of thinking about a simple flare pistol or a hot spot relighting in a dead fire pit. When you are experiencing a “flare” you are under siege, your body is in all out war, and it’s against YOU! I really think the term “pain storm” makes much more sense than the word “flare.”
Also, it is completely true that people with chronic pain try to hide it. We don’t just hide it from outsiders, we hide it from ourselves; we distract ourselves and our mind and bodies with anything we can just to trick ourselves out of feeling the pain. Unfortunately, as he mentions, this means that we usually don’t see the “stop here” wall of our max limit and often smash head first into it at a million miles an hour. Yeah, that sucks. I love all of his tips for helping to deal with the wall and how to help the Chronic avoid it in the first place.
His first ten tips deal with the day-to-day chronic pain, and his next thirteen deal with acute pain (like post-surgery). However, I found that many of the acute tips are perfect for dealing with pain storms too, so definitely read them!
I would add, to his list of what to do post-surgery, to force your partner to take the pain medication… even if they desperately don’t want to (unless they don’t want to do to nasty side effects, in which case call their doctor and get different medication). I take so many pills every day, that I will suddenly go on a kind of strike against anything extra. These strikes happen when I tend to need the medication the most (like post-surgery). I will get all angry and decide I don’t want more pills, much like a three year old child stamping their foot and trying to hold their breath until they get there way. This NEVER ends well. So do everything you can to get them their medication so that they won’t be in pain needlessly. If they go on strike, and you really can’t convince them to take the narcotic, DO NOT LET THEM SKIP THE ANTI-INFLAMMATORY!!!! Everyone will regret the decision to skip the anti-inflammatory. Everyone.
Also, he mentions the digestive issues of narcotics. Anyone that hasn’t been on prescription pain medication may not realize this, but almost all Rx pain meds cause awful constipation. If you’re already prone to constipation, like myself thanks to my IBS, then it can get HORRIBLE. After my first surgery, for a cyst removal, I had to have Dan fix the toilet (it had been bad and I was too exhausted from everything to do anything about it) and he ran out of the restroom to make sure I was okay and wasn’t going to die. Yeah, that was an awkward conversation to need to have while I was on pain medication 😛 Because it can be so bad and cause so much pain, buy a bottle of milk of magnesia or some stool softener tablets of some sort (like Colace), whatever they tolerate, and give them a little tiny bit daily (check with their doc). The dosing instructions for the generic milk of magnesia I currently have is 2-4 tablespoons a day for adults over 12 years old, and it can be split up. If I take 1 tablespoon a day when I’m having issues, it really helps keep me from getting super bad. Start before there is an issue. If it’s too late, give some of that, and then maybe follow with a stimulant laxative… again, check with the doctor. Trust me, when you’re in tons of pain from surgery, no matter where on your body, the last thing you want to do is strain to use the restroom. I always forget about this until it is too late when I’m on narcotics. Must do better at remembering the milk of magnesia.
He encourages the caretaker to encourage any vocalizations necessary to deal with pain… however, I tend to hold back as best I can because I know it distresses Dan. If the Chronic you are taking care of does the same thing, maybe have a special signal you two can use so that you can either leave the room if they don’t need you or put in earplugs, this signal could be as simple as the Chronic throwing the earplugs at you. That way, they can get the relief they need via vocalization, without causing you as much distress (or at least, without the perceived distress).
The number one tip throughout the entire article is simply to get to know the Chronic. Know exactly what they want and need, observe them so you can pick up on their invisible clues, and do what you know is best for them. Interview them if you need to, I promise they won’t mind if it’s coming from a place of love and concern and helpfulness. Let them make the decisions, or guide them, but do everything you can to back them up. It sucks being in pain, and it sucks even more having no one back you up when you have to make the hard decisions that come with the pain.
I liked this article so much that I think I’m actually going to print it out so the two of us can reference it daily.