One of the categories that I will be periodically mentioning and relating back to is chronic pain. I will not normally be focusing on the pain itself, but finding wisdom and strategies to look beyond the pain. It is a factor in my daily life, unfortunately. So, for myself and others who suffer with chronic illness and pain, I hope to identify positivity within daily life, share humor related to the situational reality of chronic pain, and spread compassion. Today though, I am focusing on the pain. I think it is important for perspective, understanding, and so that when I refer to ‘pain’ or ‘health issues’ in the future, you get what I mean. Ok, then... let’s just get it out of the way...
Among many other health issues, I live with fibromyalgia. It is a ‘mysterious’ and complicated chronic pain illness. A basic Google search will define it as a chronic pain disorder that involves widespread joint, musculoskeletal, and connective tissue pain, fatigue, sleep and mood issues, with a side of cognitive and memory difficulties. These symptoms vary in frequency and intensity from day to day, and person to person and often coexists with other painful and debilitating conditions, such as: anxiety, depression, irritable bowel syndrome, migraine and other types of headaches, interstitial cystitis or painful bladder syndrome, temporomandibular joint disorders, and various autoimmune and other disorders.
In my experience, there is no pattern or prediction for how I will feel each day. I have tried to figure it out, believe me. I do know that I have to make choices about daily activities and tasks that ‘healthy’ people do not have to make in order to protect and conserve energy to be able to make it through the hour, day, task, whatever. I will give credit to the Spoon Theory, as it is a good metaphor for the only small piece of control I have over my day to day experience.
The Spoon Theory is basically imagining that most people have an unlimited amount of energy to complete tasks throughout the day. I took this luxury for granted before getting sick. I remember when I could make a list of tasks for the day and complete most or all of them and didn't even think about it. (This theory was started by Christine Miserandino, who was trying to explain her own chronic illness to her friend using spoons as a physical model and it stuck.) It basically goes like this: A “spoon” represents a measure of energy. Most people start each day with a fresh and almost unlimited supply of spoons, because it is not something they need to think about. People with chronic illness/pain start out with fewer spoons. Then, depending on how they slept, or if they are experiencing symptoms related to various comorbidities - which also use up spoons - or the amount of pain/overexertion from of the previous day, they may start with even fewer. Getting out of bed, showering, and walking downstairs barely registers as 'a spoon' for healthy people, but for me, I’d have used up 3 spoons already at that point. I need to choose carefully how I will use each spoon. Once the spoons are gone, they are gone. I could technically borrow against tomorrow, but then what would I do tomorrow? You might find me standing in my kitchen staring at the lower cabinet that holds the pot I need to cook dinner with -- I have to consider if I have the spoon it requires to bend down and reach for that pot. Is it worth using a precious spoon? My loving husband understands this and is wonderful about helping me conserve spoons on the days that he knows I have very few. But seriously, it is just another thing I have to deal with and feel badly about needing such help. I am feeling very vulnerable explaining this, as well. It is so embarrassing, but perhaps if this will help people understand their loved ones with chronic issues better, it is worth it.
You may have heard people refer to fibromyalgia as an invisible illness, as those who have it appear outwardly to be just fine. I am almost never just fine. It is just too darn difficult to verbalize what is going on in my body in a way that others would understand. I usually cop out and just say “I am fine” (which is a big whopper lie.) Or I’ll simplify and minimize it by saying: “My back hurts” or “It’s not a great day” or “I am feeling out of it today.” I know that if I don’t explain what is going on, nobody will know, but there are various reasons why I don’t.
First of all, I don't talk about it because it is really hard to sufficiently describe without sounding like a nut case. (Please don’t think I am a nut case, because I am being quite vulnerable here trying to get this out…) When I do attempt to elucidate, I see people's faces glaze over. I start thinking 'they don’t believe me' or 'this is depressing' or 'I sound like ‘that old lady’ that everyone is afraid to ask how they are because it takes too long to answer with their lists of ailments, maladies, and complaints.' I don’t want to be any more of a burden than I already feel like. I also cannot stomach the tactless common responses I get to partial explanations. I will get into that more below.
What does the pain actually feel like?
Remember that the intensity and frequency of fibromyalgia pain varies. What I describe might not match someone else you know who has fibromyalgia’s description. There are so many variables, it is not only often different for different people, but one sufferer’s daily description could be disparate, as well. Here goes an attempt:
Imagine you have a really high fever. You know that back pain and general malaise you get with a fever? Imagine it all over your body. That is a regular day for me - a good day actually - ask me my pain scale on that day and I’ll say it is like a 2 or a 3.
Side note: Here is my version of the 10 point pain scale:
Somedays massage helps, other days I will scream if you touch me. When the musculoskeletal pain intensifies, it feels like my nerves have been hooked up to electrical wires and turned on, immediately following the feeling of being hit by a large truck, primarily in my back, shoulders, and neck. Sometimes, it is more of a sharp hot knife blade stuck deep in my body, and I am reminded of the sharpness of the blade with each movement. When I am not in a ‘flare up,’ the pain is dull and always present, but it only really bothers me if I sit too long or stand too long, or move too much or not enough.
And then there is the fatigue… it is not simply a feeling of being tired, but a debilitating lack of energy. Despite having had enough rest, I feel like I haven’t slept in days and then someone attached 100 lb weights to my limbs.
You may have heard of “fibro fog.” It is a term that refers to the cognitive dysfunction experienced by many with fibromyalgia. This brain fog affects my short and long term memory, concentration, alertness, clarity, conversation ability, and even my ability to handle stress. I need to create lists, and more lists to remember my lists. I forget what I am talking about mid sentence, where I put things, driving directions to common routes, and often lose access to common words. (Sometimes these word mishaps are quite amusing. For example, the other day I renamed our closet a ‘shoe garage’ because I couldn’t remember the word closet.) I forget birthdays, and sometimes I even forget if I forgot a birthday or not. I’ve searched bank receipts unsure if I did or did not already buy the gift I may or may not have thought about buying the prior week. I am occasionally a conversational weirdo - blurting out things I have thought about, but are delayed in relation to what is actually being said currently. (Oh, the grace my friends have shown. Thank you!) I suffer with lack of concentration and information processing. Those who know me will at this point be thinking, well, how the h-e-double hockey sticks did she complete a doctoral degree?! Well, my dear friends, that is why I am so extra proud of that accomplishment, because it was not easy - even without brain fog, and I, too, have no idea how I did it. (That degree might actually be partially responsible for completely breaking me.)
Most notable and frustrating for me is the effect fibro fog has on my ability to handle stress now. I am highly sensitive and find that I now get too easily overwhelmed by small things when my pain is flaring. I am learning to say ‘NO’ to commitments I know I won’t be able to handle, but I do still put myself in frustrating situations and overthink and overwhelm myself with details. Sometimes there just aren’t enough spoons.
There are many comorbidities (simultaneous presence of two or more chronic diseases or conditions in a patient) of fibromyalgia. Of them, I suffer with the following: major depression, anxiety and panic disorders, migraines, irritable bowel syndrome, chronic fatigue, hypothyroidism/Hashimoto's, and I am currently awaiting further testing indicating rheumatoid arthritis.) Add to all of that my heart arrhythmias, hyper-coagulable blood/pulmonary embolism history and risk/Post-Thrombotic syndrome, GERD and esophageal damage, osteoarthritis, degenerative joint disease and cervical spondylosis, costochondritis, POS, metabolic irregularities.... These things all stink and make everything above worse.
What helps? 1) Management of my spoons. This includes saying ‘no’ to events, activities, and daily tasks that I want to do, but that I know I cannot. 2) Self-care, including a regular sleep routine, healthy diet, and getting enough - but not too much - exercise. 3) My loving family, who understands what I go through and are consistently sympathetic (without pity) and helpful. 4) My pets. Seriously! I am 100% convinced that pet therapy is real and though it doesn’t take away the pain, it sure helps. Beaufort the dog and Fiona the cat are my furry heroes! 5) Other therapies…maybe. I have tried everything from PT to nerve blocks to various alternative medicine therapies. I take a pharmacy full of medications, vitamins, and supplements daily. I will say that of all I have tried - massage therapy usually helps. Sometimes heat and/or ice help temporarily, and I am currently trying something new with Far Infrared (FIR) and Pulsed Electromagnetic Field (PEMF) therapies. We’ll see what comes of that.
Hello? Are you still there? If so, thank you. Please don’t look at me differently, and please understand when I say I can’t do whatever I used to be able to do. Regarding those who probably stopped reading long before this, I don’t blame them. This is a lot. However, I am reminded of why I do not often talk about it. There are some responses of insensitive people just make me angry... I know everyone has something they are going through and most comments do come from a place of care, but...
Yes, I am sensitive about it. Mostly because after almost a decade of suffering I have been appalled at the insensitivities of others regarding a condition they do not have, therefore cannot possibly understand. Here are a few warnings of things not to say to those who suffer with similar chronic pain conditions and examples of responses that perturb me: 1) People who refer to their age related or normal aches and pains as fibromyalgia. Fibromyalgia is difficult enough for doctors and those of us who suffer from it to obtain a diagnosis for, so those proclaiming they have it when they do not does not help those of us who truly do suffer with it daily. It weakens the authenticity of it. 2) Unless you want a kick in the head, never presume it is ‘all in my head’ 3) I know Jesus and I love Him. I can guarantee that being a Christian has not and will not cure fibromyalgia. This goes for a diagnosis of clinical depression as well, but that is for another rant. 4) If you acknowledge that I experience pain, but think I must be exaggerating my ‘condition,’ please just walk away. Walk away fast. It will be difficult for me to catch you and that is beneficial for you. 5) Do not, I repeat, do NOT ever suggest to a person suffering from fibromyalgia that they should try some simple and obvious wellness routine, like yoga or your MLM vitamins. I realize these suggestions come from places of good intent, but for the love of all things holy, do you not think someone who suffers as I do for so many years has not tried all those things already?
In the next post, I promise to get back on topic - back to seeking sagacity in life! This topic needs to get out there and I think it is foundational to understanding my future perspectives. Thank you for hearing me and thank you for trying to understand. Thank you from me and from other present and future chronic pain sufferers in your life for supporting us with your presence and patience. Fibromyalgia makes life very complicated and often challenging, but it also accentuates my gratitude for what is not complicated in my life, like my faith and my family.
I saw this on a friend's social media timeline recently:
It made me laugh, I’ll admit that. It also made me ponder the duplicity of human personalities. Or am I wrong? Are there humans out there (who are being honest with themselves) who do not have opposing thoughts on similar topics from time to time?
Using the example above, some days I barely notice or care if someone else is using their turn signal or not.
Other days it irks me beyond reason.
The difference? Usually, it is due to my own patience meter: my mood, my circumstance, my level of busyness, my lateness, my poor planning, my current pain level (physical or emotional), etc.
Do I always use my turn signal? I think I do. I try to. I am not perfect. Stop judging me.
Oh. Hmmm. What if, despite my honest attempts to follow traffic laws of all sorts (including signal use)... What if I am the miscreant? When I turn it around like that, it feels different. If someone were to drive past me and flick me off or yell mean things pertaining to my use or non-use of my turn signal, how would I react?
I guess it depends on if I felt I was in the wrong or not. Was I behaving badly? Do I deserve a good telling off? Is it even the other driver’s obligation to notify me that they believe I am a bad driver?
There are so many situations where we are put into a similar position to react (or not react) to others’ (in our opinion) “bad” behavior. There are moral judgments being made all the time, all around you (and probably about you). These public evaluations of the rightness or wrongness of others’ behavior - are they a societal necessity?
I do sometimes find it difficult to restrain in commenting (whether silently or not) on (what I perceive as) bad behavior of other adults. Someone offends me - with words, on the road, with their beliefs, etc.... How do I react? Is it my first human instinct to be defensive and react rudely? Pass the blame?
I don’t always have the restraint I need at the time I need it. I know how I should respond.
I should exercise patience, kindness, and forgiveness, but sometimes I cannot help thinking...
Now, can I justify this line of thinking as a Christian? No. If I say more, I am trying to excuse myself. Unfortunately, it doesn’t stop me from occasional jerkiness. I am reminded of this quote from a classic:
“There is no religion without love,
and people may talk as much as
they like about their religion, but
if it does not teach them to be good
and kind to man and beast,
it is all a sham.”
― Anna Sewell, Black Beauty
I have to admit it is difficult to not misrepresent Christianity with my reactive behaviors in regard to other people’s (what I feel) bad behavior. There needs to be a general understanding that humans are all sinners, Christians included. We all have behaved badly at some point, right? As a Christian, it is my daily objective to not willfully continue in sin.
1 John 1:8 If we say that we do not have any sin, we are deceiving ourselves and we’re not being truthful to ourselves.
Proverbs 24:16 for though the righteous fall seven times, they rise again, but the wicked stumble when calamity strikes.
Does this mean that I indeed conform to the moral norms I am so eagerly inclined to enforce in others?
(gulp) Ok I will try. No promises, but consider me a work in progress.
So, when is it ok to comment and react to other humans behaving badly? (I am talking about strangers, here… people driving in cars, shopping in stores, posting on the Internet --- but you do not know them.)
I don’t know. What do you think? I will lean towards an answer such as, “It depends.” I am pretty sure that is not the right answer, though.
Things I try to remember when strangers make me angry or frustrated, etc.:
The sagacity here: Keep yourself in-check. Let God deal with the others.
Let me attempt to clear this up right away: What is sagacity?
First of all, let’s say it correctly: The fancy pronunciation guide shows it like this: sə-ˈga-sə-tē.
I find it easier to illustrate the pronunciation like this: “suh - GAS - ity.”
The word sagacity, according to dictionary.com, is a noun commonly defined as the acuteness of mental discernment and soundness of judgment. Some synonyms of sagacity include: discernment, insight, perception, sageness, sapience, enlightenment, judgment, comprehension and wisdom. Some antonyms of sagacity include: inability, stupidity, misunderstanding, ignorance, mistake, misinterpretation, ineptness
Pardon me for a minute here while I throw in some nerdy-wordy factoids. While I had initially guessed that the root of the word sagacity would be “sage” - meaning wise - it is not. According to Merriam-Webster, Sagacity traces back to sagire, which is a Latin verb meaning “to perceive keenly”. Another word relative of sagacity is the Latin adjective sagus ("prophetic"), which is the ancestor of our verb seek. Contrarily, the word sage comes from a different Latin verb, sapere, which means "to have good taste" or "to be wise."
The meaning suggests having a quickness of perception and sound judgement. A sagacious person has an ability to see the big picture, and to cut through a situation's unimportant fluff to grasp the essentials of a problem's solution.
Why do I seek sagacity? In my core, I have always felt that knowledge is power. Maybe I watched too much tv in the early 90s and the TV public service announcements claiming “The More You Know…” was programmed into me or perhaps my book report on Thomas Jefferson in grade school took root, but whatever the reason, I have always felt comfort in learning. I like to make order out of chaos. My impetus as an educator is to understand in order to be able to evaluate.
I suppose on a worldly level, seeking wisdom serves me in a sense of preparedness. I don’t like to be surprised by the unknown. I am with the chemist Louis Pasteur, who said “Chance favors the prepared mind.” (Another famous quote by this french scientist of the 19th century is “Wine is the most healthful and most hygienic of beverages,” but that is discussion for another time.)
--- An ‘I am only human’ moment --- I’ll be honest, speculation is a personal peeve of mine. I, personally, fear association with ignorance. In my opinion, blurring facts with assumed knowledge or shallow reporting is disrespectful- not only to the subject and content, but to the essence of knowledge and wisdom.
On a spiritual level, my seeking of sagacity is deeper. Sagacity is what helps us understand and see the difference between good and evil, or right and wrong. Therefore, by acquiring and exercising wisdom, we increase our purpose or contentment in leading a life that has a spiritual quality God wants to see in us. While we can never have God's wisdom, we can seek sagacity in our own lives. I also really hate Satan. I want to be able to see past his clever deceptions and follow Christ as He intended me to, and not be an overall jerk.
So many reasons there are to seek truth and knowledge, but ultimately: sagacity is bigger than knowledge. Knowledge is simply knowing, but wisdom or sagacity necessitates perspective and the ability to make sound judgments about a subject. There are so many quotes and sayings comparing and relating these concepts:
Knowledge is being aware of what you can do. Wisdom is knowing when not to do it.
Knowledge is knowing what to say. Wisdom is knowing whether or not to say it.
Knowledge comes from learning. Wisdom comes from living.
Knowledge is realizing that the street is one way. Wisdom is looking both directions anyway.
Knowledge speaks, but wisdom listens.
And a favorite...
Knowledge is knowing a tomato is a fruit. Wisdom is not putting it in a fruit salad.
The Bible, especially the books of Proverbs and Ecclesiastes, is filled with timeless advice on the subject. Here is a list of Bible verses about wisdom. My favorite, and perhaps to the point of this blog and my purpose:
A person of understanding delights in wisdom. ~ Proverbs 10:23
I really like digging deep. Here I go, diving off the deep end into a pool of blog water I know nothing about to seek sagacity in an optimistically desperate way. Please join me.
I am Susan. This space holds my own ponderings and observations.