WEGO Health Activist Awards Judge 2016
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Spoonie Feelings 101
I feel the need to clarify. Explain. Extrapolate, even. Define.
A few days ago I could have SWORN the worst of this flare was over!! If I’d bet my money on it, I would now be picking up pennies from drain sewers to pay the mortgage (O.O) Dammit all to h-e-double toothpicks!!
I felt “good”, and by good, I mean I had a squidge more energy, I didn’t feel quite so brain fuzzy…pain was merely localized and on a scale of 4/5 out of 10 instead of a 6/7.
How do you feel when YOU feel “good”? What is, “good”? (I’d typed “gook” four friggin’ times before I got the right spelling. *sigh*)
Define it. Quantify it.
Now I shall attempt, after birthing five children, with my four remaining brain cells, dealing with three of them being redheads, two daycare girls and a partridge in a freakin’ pear tree….*takes a breath*….to clarify what in the blue hell spoonies mean when they say they feel “good”.
I suppose though, that in order to do such a difficult and challenging task, I would therefore need to actually construct a “feel” chart.
Here it is.
Spoonie Feelings 101:
“Great!” :o) = Seriously? Great? I suppose one could feel great spiritually…emotionally…but this is an extraordinarily rare feeling and is generally only regarded as a fairy tale told to small children.
“Good!” = I managed, whilst in the throes of aches, pains and holy-crap-on-a-cracker make it go away! to not only get out of bed, but also get showered AND dressed AND made it to the doctor’s office. To feel “Good!” means you narrowly squeaked by the fine line between having run out of spoons and having to borrow one (or a dozen) from tomorrow. This feeling happens once in a blue moon:
*No matter which definition you use, a blue moon isn’t exactly rare. A “modern” blue moon occurs approximately every two-and-a-half years. And while we couldn’t find the exact rate of occurrence of a “Famers’ Almanac” blue moon, it appears to be approximately the same.~~as taken from Ask Yahoo*
So there you have it. Someone afflicted with a chronic illness (not to mention the eleventy-billion OTHER conditions that can afflict concurrently) will feel “Good!” once in about every 2 1/2 years. Mark your calendar, put it in your PDA…you aren’t going to wanna miss it!
“Good.” = This one is tricky. It can either mean, “I’ll tell you what I think will just make you go away content and leave me alone to suffer the wrath of the hounds of hell,” or, “Well, if I had to choose between getting hit by a bus or feeling the way I do now…I guess I’ll take “feeling the way I do now,” for $100, Alex.
“Meh.” = This is like a fulcum of “feeling”…it could really go either way and we’re likely a big ol’ ball of stress wondering which way it will, in fact, go from here. It’s that, “I feel funny.” Or, “I’m feeling *off*”…and that I could either feel better in 10 minutes, or be contorted on the floor writhing in pain in 15. Kind of a game of roulette, it is. And it’s a game I, nor many other spoonies, are really fond of playing. You can’t cheat at it. I know. I’ve tried.
“Unwell.” = If you hear the “I’m feeling unwell,” it generally sucks to be you. This is the politically correct term that we use when dealing with doctors and specialists who don’t give a flying frak about us or the conditions by which we are afflicted. It means we couldn’t care less what you THINK you think when asking us “How are you feeling today?” because we know you are just asking asking us how we’re feeling to be politically correct knowing we have such afflictions.
There’s not a spoonie on earth who could likely follow what I just said. I had to re-read it three times. Really. Friggin’. Slowly.
“Bad.” = Our “bad” and your “bad” take different paths yet again (kind of like the “good” and “great”) “I feel bad today.” This means that my ankles feel like they’ve got some sort of fire ant bites. As do my hips, my knees, my wrists, fingers and upper shoulders. It means I’ve got a headache so bad that my eyes feel like they’re two sizes too big for their sockets (as I secretly cross my fingers that it doesn’t turn into a migraine). It means I am literally forcing myself to take every goddamned step to that bus stop/park because I goddamn well HAVE to. The world doesn’t stop just because I feel bad (so suck it up and get your ass moving because you’re running out of time and they’re going to miss the school bus/playdate). It means my fingers can’t control my toothbrush inserted into my mouth and I spasmodically tear the side of my gums attempting to grapple the stupid thing in my OTHER hand which ALSO doesn’t work but which will have to do because I have to get out the door NOW. It means my wrist feels like it did last year when it was broken. “Bad” = normal for me. Sucks ass.
The majority of chronically ill patients who have already spent years just trying to obtain their diagnoses will spend the NEXT few years trying out a buffet of prescription medications to find the right-one-for-me combination that will nullify their “bad”. ‘Cept this buffet doesn’t cost $9.99 per person and come with a little mint at the end of it. Or a sucker. I like the restaurants that give suckers. Too bad they’re not Tootsie Pops. I looooooooove Tootsie pops!!
“Awful.” = This is actually more common than you’d realize, because most of the time we spoonies withhold information from you. Sorry ’bout that. But, really….You think you get tired of asking us how we’re feeling? Imagine how we feel answering you. “I feel awful.” This means taking how you felt when you last had the flu, multiply it by 10, add in the bone crushing fatigue, subtract the spoons and divide by the number of tasks that were put off until tomorrow = awful. Awful? AWFUL? You can’t HANDLE the awful!!! No, seriously. WE can’t even handle the awful. Awful leads to cancelling social engagements. Awful leads to depression. Chronic awful leads to the loss of employment. And NONE of those factor in the emotions attached to each consequence of “awful.”
“Horrible” = This one NEVER needs bold or italicize. This one is the mother of all “feel”, and I would highly recommend putting on your empathy hats for this one. This one not only takes control of your entire body, it can dig into the far recesses of your mind, making you feel things that perhaps are not even true, or real. This is a nasty, dangerous “feel” and scientists REALLY need to get their asses in gear and find out how to eradicate this mo-fo. They can put a bloody robot on MARS, but they can’t figure out how to prevent the “horrible”??!! Whatever.
This one involves the vomiting (yes, you need to read about the rawness…we have to go through it…suck it up).
This one involves the “kill me now because what the fuck is the point.”
Imagine not being able to get out of bed. Likely for days. Bedpans, even, in some of the more severe bouts of “horrible.” Watching your family suffer your lack of presence. Missing your kids’ soccer games. School concerts. Losing your job. Remember, these are invisible illnesses…try getting disability when even your doctors don’t know what the blue hell to do!! Imagine the emotional turmoil of seeing your spouse or significant other having to manage EVERYTHING, at times.
Imagine if they can’t.
No, my dear friends…”good” does not, in any way, equate with the same “good” we used to have in days gone by. Many of us likely don’t even remember what a good ol’ fashioned “good” even felt like!
SO. Where do we go from here? This is what *I* think…highly subjective, yes. All things are subjective. All things are also relative. If that is true, then we, as spoonies, must at least attempt to make it relative when people ask how we’re feeling!!
“Oh, so you’re feeling good today?”
“Remember the time you felt a little wonky and had to leave work early? That’s kind of like my ‘good’. But it’s better than how I felt yesterday. That’s what makes it ‘good’.”
“Are your joints hurting today?”
“Remember when you sprained your ankle playing volleyball a few years ago? It’s kind of like that, but if that was, say, a 5 on a pain scale, I’m perceiving this as a 6 or 7. All over.”
How easy is it to explain snow to people who haven’t seen it? It’s white. And cold. But what ELSE? It’s actually clear crystals that clump together. It has a “smell”. It melts on your tongue. It lights up the nighttime if there’s low cloud cover. It can fall in big, fluffy flakes. It can…well…do you see where I’m going with this?
Try it. Try giving your audience of support a baseline from which they can then extrapolate how they could possibly perceive your level of “feel”.
Bet it’ll make everyone “feel” just a little bit more understood. :o)