This post was going to be about music. That will have to wait, because WOW did I get sidetracked today!
Today marks five years since I survived an unprovoked acute pulmonary embolism. Although there is much to celebrate considering survival rates and risk factors surrounding my situation, that is not my focus here. As I have for the last 4 years, I set out this morning to find an informative graphic to post on social media as my own personal Pulmonary Embolism Awareness Day. (Seriously, know the signs - save a life!) Anyway, during my search, I came across this graphic:
My first instinctive response was, “Heck yes! I am a PE survivor. I kicked that PE’s butt. HooYa!”
But then…. Wait. That is stupid. I am no theologian and may very well be wrong about all of this, but I call malarkey. This meme is telling me to talk to the devil and claim to be a storm.
I am not the storm. The storm is (whatever is currently) the calamity in our lives, in my case on this day five years ago - a life threatening health event that tested my faith. These tests in our lives make us wonder - did the devil cause this and did God allow this to happen? I can speculate what spiritual warfare was going on or why me, etc, but being five years out and looking back, the storm had one major benefit: It did strengthen my faith. I was scared; I turned to God. He has comforted and strengthened me. So, no, I am not the storm. I want to praise Him in the storm. (https://youtu.be/0YUGwUgBvTU) Further, what if I had not survived the PE? I would certainly not want my family to suffer and blame God - or to think my faith wasn’t strong enough to save myself. I really do not think that is how it works. There is sin and calamity in the world, and I have no control over it. For my comfort and sanity, I work everyday to try to strengthen my faith, so that I can be strong in the Lord for the next storm, whatever the outcome. (Luke 8:22-25)
Next, if the devil was whispering in my ear, I’d be praying to God in the name of Jesus - not engaging in conversation with the enemy! I have no authority over the devil, but I do have protection through the authority of Jesus and the power of His name.
Although I appreciate the intention of the original author, whoever that might be, his meme is just silliness.
Here is a more appropriate PE graphic to celebrate today:
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 am Susan. This space holds my own ponderings and observations.