Because the Pains of Fibromyalgia and Lupus are Always Persistent, this is One Moms Light-Hearted Approach to Feeling Miserable Every Day
Author: fibropage1
The Fibro-Lupus Butterfly is a website about a mom of ten blessings whom she has homeschooled for over 28 years. She has battled the wolves of Fibromyalgia and Lupus for over a decade while trying to find balance in her life of daily pain. The "About Me" tab gives the whole story about her journey.
For some it means returning to work after a long holiday. For others it means seeing their children off to school after their Christmas break. For me, it means the beginning of of a new year and back to home schooling! I’ve home schooled for over 28 years and still enjoy it very much. Reading aloud, learning along with them, watching the light bulb go off when they finally “get it” -all the best!
My Fibromyalgia and Lupus pain have been my constant companion for well over a decade of that. Throw in a Bluegrass Gospel band for a decade and it was quite busy!
Yes, my life has slowed down with sons serving in the USA in the military and most daughters married and running their homes, but my pain never leaves.
Yesterday I had the rug jerked out from underneath me with what I call a “Fibro-headache”… that all-consuming, joint-encompassing pain that HURTS and makes you bed-bound to (try to) sleep it off. Ibuprofen is my friend on these days and, although it doesn’t make it leave completely, it will take the edge off.
Those are rough days and not the best way to start to year.
We all know that Fibromyalgia and Lupus don’t take a break, so should I be surprised? (Chuckle of sarcasm).
Alas, today is a new day and I will take it one moment at a time, leaning of Jesus for strength and endurance. He always delivers!
“You can talk to me about your pain.”-“Tell me how you are feeling.”-“I’m here for you.”-“Maybe it would help you to talk about your pain.”-“If you didn’t keep your thoughts pent-up, you may feel better.”-“How am I to understand what you deal with if you don’t communicate with me??”
… and so, you reluctantly open up and express how the pain makes you feel; from sun-up to sun-down and all night long.
They stare at you. You continue…
“When I wake up in the morning, I feel exhausted before I even rise, my pain is literally from head to toe, on varying levels. It is all I can do to get out of bed. It is challenging to get going. I will myself to do my morning stretches, because I know it will help me maneuver the day better. Throughout the day, I need to keep moving so my body does not lock up; I am still hurting with every move, though. I do my best to keep a positive attitude and a smile on my face, to hide how bad moving can be. Resting is important, but it is like starting the day all over again when I need to get up. I keep moving to keep the pain levels down, but the pain never goes away.
“I feel tired and worn out all the time no matter what I do. I get these electric-like jolts that attack my head, sometimes my hips or back, randomly, and without warning, making me look like a scene from the movie ‘The Jerk.’ In the morning I may hurt in a different place than the afternoon. I may have a swelling knee at noon and the inability to walk by 4pm, lack of dexterity in my hand(s), back pain that doesn’t allow be to bend over, plantar fasciitis may rear its head again, or my hip may fail me, or a completely different issue between it all. I NEVER KNOW. The migraines are the worst, though. No warning and all-consuming.”
You continue on, likely sounding like a complete hypochondriac, but knowing you are not. You shock yourself with how bad it all sounds in the first place, but, because they asked you to share your pain with them, you continue on, spilling open your vulnerable heart.
They seem to be listening, and then…
Instead of the compassion and sympathy you might have expected to receive, they start telling you all of the things they think you should be doing, haven’t done, need to try, because they just KNOW that what you are going through must be blown out of proportion, or your pain tolerance is weak.
“Perhaps your pain is caused by the detergent you use, or your shampoo, or the candles you love, maybe it is what you eat, or what you don’t… lack of exercise… how you exercise… not enough sun… too much sun… You need to take these vitamins and stop taking those… ‘I’ve heard microwaves may do something…’ You need to try this…, Oh, have you tried that? …”
… and on and on and on as you sit there, getting anxious, irritated, and your body starts to stiffen up, causing you even more body pain… pain that you would never mention after this conversation… and now-emotional pain, and you stifle back the urge to cry while you silently beat yourself up for saying anything at all in the first place…
You know they mean well… (or do they???) …
… and then… they, (with no arthritic or health issues at all), begin to tell you how bad they can feel in a day just being alive (clearly stating their pain was worse when they bumped their elbow that morning), or how tired they are all-day-long, and they “GET IT” (anyone who has had a similar conversation knows exactly how irritating that “I Get It” can be, especially from a person that has NO CLUE)… and you interrupt them and ask ONE question…
“Have you ever read up on Fibromyalgia or Lupus?”
… and their response is…
“Well, no, not exactly.”
… and then…
… you say, “How can you sit there and try to give me advice when you have NO IDEA what you are even talking about????”
and then… you realize you’ve become a victim, and you vow to never expose yourself like that again. You feel robbed of your person, exposed, judged and helpless.
At this point the conversation becomes useless and bothersome, and you end it-immediately (which probably should have ended before then, anyway).
So, unless someone has researched these conditions and tried their best to put themselves in your shoes and not just listen to you, but hear you, empathize with you in their heart, give you a gentle hug and be the friend they “claim” to be, they have no business asking you to open up and then unleashing all the words that don’t help.
Anyone… I mean anyone, who researches Lupus and/or Fibromyalgia should be empathetic to the sufferer’s plight and realize it’s not environmental, lack of this, lack of that, etc.
Toxic people do not help sufferers of Lupus and Fibromyalgia. Purge them from your life.
If you have a loved one who suffers from Lupus and/or Fibromyalgia, be mindful before you ask them how they really feel. Do your research on these conditions first before you open your mouth.
Back when I was first diagnosed with fibromyalgia, my pain journey started out relatively slow. The normal things I tried to do caused me to hurt… but, I adjusted my mind to this new challenge and ‘marched’ on through the tears of pain. Then, the pain got progressively worse and it became harder for my mind to process through. My marching became more of a trot… then a brisk walk… then a hobble, and now I can barely get going.
Mind-over-matter became my motto and I did my best to press on, because, we all know that life doesn’t stop for anything. That was in 2015.
Fast-forward to over a decade later and “mind-over-matter” has become a real struggle for me. I am my own cheerleader. It is hard for me to be the one in the game and also the one cheering myself on at the same time. My battle is daily… not just with pain, but with my perseverance… which seems to be wanning. It is difficult to push through all.day.long. I mean, I already do that. But it wears on the mental soul.
I push to get out of bed. I push to go exercise and do my stretches. (The pain will always be there, so I have been pushing through with exercise for almost 2 years to help the rest of me). Some mornings it’s all I can do to even get dressed and some days, it’s exercising with tears of the “good” pain, as well as tears of frustration because it hurts to do anything.
Some days it’s tears of utter irritation that I have to have mind-over-matter in the first place.
Some days I want to throw a tantrum and hammer a thousand nails into the wall and get all that frustration out. But, as anyone with chronic pain knows, that is NOT the answer… it would only debilitate me and make my joints and body hurt worse, not to mention the mental anguish from giving in and dealing with my self-inflicted “more pain.” ha-ha
I will admit though, I have scrubbed many a bathtub vigorously to get the frustration out. I will also say that at the time, it felt GOOD!!! But… an hour later… throughout the night… the next day… I’ve paid for it. Paid for it in PAIN. The inability to be able to move after such a thing as cleaning a bathtub, pulling weeds, raking leaves, mopping a floor, running an vacuum, etc. no one can understand, except by those that have Fibromyalgia, Lupus or other arthritic issues. It’s a bad wrap. Truly.
Mind-over-matter is a rough business. I pray daily for strength and perseverance of mind.
My newly adopted motto is in KJV Psalms 118:24 which says “This is the day which the LORD hath made; we will rejoice and be glad in it.”
Yes, it hurts to wake up and then remember you hurt. Therefore, I am also trying to have the motto of “The Power of Positive Thinking.” I’ll let you know how that’s going in another post. ha-ha.
Even before I was diagnosed with PsA, Fibromyalgia and Lupus, life never seemed to allow for breaks. Back then, vacations were nice, but the looming feeling of going back to the daily routine always seemed to over-shadow the vacation. Now, vacations are more about making me as comfortable as possible while traveling and while at the destination. The pain never stops, but the change of scenery can be a good thing.
I am visiting Arizona in July. For those that know how HOT it gets in southern Arizona in July, you may be wondering WHY I would choose to visit in the hottest month of their year. The answer is simple. My dear momma had her 4th stroke in the early spring of 2024 and my brother, who lived down the street from her, gave up his life to move in and care of her. I arrived from 5 states away to give him a much-needed break and make precious memories with my mom.
As a sufferer of chronic pain, this feat has not been easy. I brought along with me my 16-year-old daughter to help with the chores and the cooking allowing me to spend more time with my mother. I still wake up feeling run over, and my pain has not stopped while I am here.
My daily routine is off and honestly, my pain is soaring, but I know I am where I am supposed to be.
I have been trying to take things one moment at a time. The Lupus flare that attacked my hips and lower back, causing me unbearable pain, was halted just before my trip across the country, due to a nine-day course of steroids. It’s been 2 weeks since the meds ended and the pain has been trickling back at a steady pace, each day wreaking havoc on my joints. I also have nose ulcers which have developed and are quite painful. Lupus is NOT FUN. Add the normal Fibro pain and you have a recipe for the scene out of The Wizard of Oz when the Tin-man asks Dorothy for his oil can…
Since I’ve been here, my body has been asked to do things I would not normally do, like move boxes, bend over for long periods of time, squat, sit cross-legged, reach for things higher than I can manage, grocery shop every third day for fresh produce for my mom, help her with her daily PT, take her to the pool for PT, etc. By the end of the day, I feel completely run over and can scarcely move and then… it all begins again. I try to hide as much of my discomfort as I can, moving and doing all day, knowing I am helping my mom. But when she goes to bed, my body just screams!!!
I am not complaining, just stating how it is.
Chronic pain sufferers know that life does not stop. We just bulldoze ourselves through the day and each situation. Our time to rest comes in the little moments we MUST find or the days when we know we don’t have to “do.” When someone else needs us, we give all we can, and do our best, even when we feel like the fight has left us.
Mind-over-matter is the motto I strive for.
That motto takes its toll on my mind, body and soul. I must keep going, even through the silent tears that no one sees. Ministering to others is a good thing for the soul. God will give me the strength to keep on, keeping on! He always does. God is holding on to me today, even when I feel I need to be there for everyone else.
I seem to feel I need to hold it all together every day and sometimes that makes me feel alone, but I know God wants me to slow down and allow Him to help. When I feel tired, God is helping me get through the day. When I am in pain, God is holding me; it is my job to allow myself to “just be held” by God.
The song, “Just Be Held” by Casting Crowns comes to mind…
Hold it all together Everybody needs you strong But life hits you out of nowhere And barely leaves you holding on
And when you’re tired of fighting Chained by your control There’s freedom in surrender Lay it down and let it go
So, when you’re on your knees and answers seem so far away You’re not alone, stop holding on and just be held Your world’s not falling apart, it’s falling into place I’m on the throne, stop holding on and just be held Just be held, just be held
If your eyes are on the storm You’ll wonder if I love you still But if your eyes are on the cross You’ll know I always have, and I always will
And not a tear is wasted In time, you’ll understand I’m painting beauty with the ashes Your life is in My hands
So, when you’re on your knees and answers seem so far away You’re not alone, stop holding on and just be held Your world’s not falling apart, it’s falling into place I’m on the throne, stop holding on and just be held Just be held, just be held
Lift your hands, lift your eyes In the storm is where you’ll find Me And where you are, I’ll hold your heart I’ll hold your heart
Come to Me, find your rest In the arms of the God who won’t let go
So, when you’re on your knees and answers seem so far away You’re not alone, stop holding on and just be held Your world’s not falling apart, it’s falling into place I’m on the throne, stop holding on and just be held (stop holding on) Just be held, just be held
Just be held, just be held
So, today just be held by the ONE who loves you. Let us find our rest in God.
As of today, I have one more state to go before I reach my destination. Recent blood tests show that I am in a Lupus flare. Driving with Fibromyalgia is hard enough, but driving in a Lupus flare makes things a “bit” more adventurous! The steroids my PCP put me on are no more and my body definitely feels like it!! One day at a time, one minute at a time!!
I am headed west to take care of my mom for a few weeks. This trip was planned way before my (new-again Lupus diagnosis); You know, the diagnosis where I finally BELIEVE I have it.
I am the driver on this trip, and I made sure I stopped every 2 hours to walk a bit and to keep blood clots away, per my doctor’s advice. I spent no more than 6-7 hours per day in the car and stayed at Holiday Inn Express Hotels because, in my opinion, they have the comfiest beds for the price.
My right knee swelled on day one, so I used the knee brace I brought with me. Each night I have used the heating pad I packed to help soothe my aching hips and lower back. I am traveling with my teenage daughter, so I even put her to use, and she has helped rub out my tired, aching, arm and shoulder muscles from driving, as needed.
Sunscreen has become my new friend, and since I am going west, it will definitely be needed!
So, as you travel this summer, be sure to pace yourself, walk and do your best each day! I am doing my best to take my own advice! ha-ha
As a sufferer of psoriasis, Psoriatic Arthritis and fibromyalgia, getting through my day can be challenging. Add a double fracture to my Coccyx, and the day becomes overwhelming.
I (might have) had the Arthritis part down before my fall; my morning routine consisted of stiff and sore me (feeling like I’d been run over already) brushing my teeth, drinking water, eating half a protein bar and slowly getting on work-out clothes and feet bands and making my way to the work-out room where I proceeded to stretch, use weights and do aerobic-type exercises conducive for arthritic conditions (a 20-60 minute endeavor, depending on the level of pain and how I was feeling). I would then make my way to the shower and begin my day in the hopes that my pain would stay away at least an hour.
The exercising was great… once I’d get going (or willing myself to do it, which was the key to my success)… and I would feel better for most of the morning before all those nasty pains began to creep upon me like Spiderman’s symbiote self, hanging on like an uninvited guest.
Enter my fall…and now I have a sore, fractured bum to contend with on top of my normal pain issues.
The fall also caused a 2 week Fibro flare, which plagued my mental state, as some days it was all I could do to get through it…and my exercising came to an abrupt hault, causing me to go back to my pre- exercise days of hurting all day long with no relief from the pain, no mental stress relief, nothing.
For those of you who know anything about me, or follow my FB page, you know I’m all about not using medicine for these conditions, i.e., prescription pain medication or micro-dosing or using any type of plant-based methods for pain. I rely solely on self-pacing methods throughout the day (I will use Ibuprofen for those Fibro migraines). But rest and positive mental self-reinforcement are my preferred methods; surrounding myself with people who support those decisions and are willing to help me during the bad days. I don’t want to become dependent on meds or stimulants; I want to maintain control of these conditions I’ve been (blessed) to live with.
I came to realize that my daily exercise routine had become a positive part of my life, and I needed it! It helped with the mental stress of living with a chronic pain condition, helped with cognative disfunction as well as offered toning of my muscles. It also helped with my cardio and gave me something to look forward to each day. Albeit was a challenge some mornings, but once I was into the groove, it became an outlet for my soul, a natural drug of happiness, knowing I was helping my whole body be better, even though the pain was still there. I mean, let’s be honest here…the pain never goes away, so why not exercise through it and help keep the rest of you from falling a part? At least, that was my justification, and it was working for me… until the fall.
I’ve been down for 3 weeks, and if I bend the wrong way, sit down too fast, forget to use my cushion seat, lift anything, (begin to feel better and forget that I’m still broke and healing), etc., I revert back like it’s week one, down to icing my bum several times a day.
I have begun some light stretches again, slowly helping my bummy to get better, and that has been good. I lay over a balance ball and use it to help me sit and stretch. I admit these past 3 weeks have been hard mentally, and I didn’t realize how dependent I’d become on my exercise routine until I was robbed of it with the fall.
Some mornings, I’d literally have tears sliding down my cheeks from those stretches, (the joint pain was the worst), but deep down I knew they were helping, so I’d keep persevering and make a better me for my future self.
All-in-all, if you haven’t started exercising, please do! It truly does help physically and mentally. Fibromyalgia is difficult. NO ONE understands this except those who have it. Please know that here, you will find understanding.
Start exercising slowly and maintain a steady routine that works for you. Also, be sure to speak to your healthcare provider before starting any new exercise program.
When you suffer daily with chronic pain symptoms, some days are harder than others, and some times in the day are harder than others. It’s like a game of Russian Roulette. You NEVER know what body part is going to cause you grief today.
Happy stretching for a better tomorrow. God Bless-
Dealing with Fibromyalgia and taking care of your spouse who has Myelofibrosis can be complicated, but taking things one day at a time; one moment at a time, is the best approach.
Two years ago, talk of a Bone Marrow Transplant began. A failed clinical trial in 2019 and Covid-19 later, and we are now on that path.
On June 14, 2021 he began Chemotherapy to prepare for the transplant. It was a rough week, but honestly, the week after and the week after that has been worse. Today is July 3-18 days after his first dose. I am currently sitting in a Cancer Hospital in the city while my husband is being treated for Neutropenic fever. We have been here for 3 days so far without an end in sight.
(Being a holiday weekend, I made arrangements for our oldest daughter to take care of our youngest three still at home. She is planning to make as memorable a weekend as possible for them.)
My husband is still running a low grade fever and coughing non-stop. They have tried everything. He has two inflamed lumps under his arms they have been treating with multiple antibiotics. He is worn out, constantly needing transfusions and wanting to be at home. My heart hurts for him. I fear this is going to be a long summer…
As a Fibro sufferer, I have had to really take care of myself through all of this.
Easier said than done!
I need to eat healthy at the cafeteria, walk the halls often, rest when I can, and not let the stress of concern affect me. I have to give each little thing over to God and take it day by day. It takes practice, but it is the best way for me to manage the pain I constantly have in my joints and body (an occasional Aleve helps, too).
I always think that how I feel is nothing compared to what my husband is going through. While this is true, I still have a medical condition and need to take care of myself so I can take care of him.
He needs me to help him because I need him to help me!
I pretty much shelved this blog due to all the Covid19 goings-on. The drama online was enough to keep me from the internet. Nothing has been positive and all seems to be gloom and doom, political and demeaning.
So here I sit, many wondering if I am still alive and kicking…
Alive, yes. Kicking…well, if you have Fibromyalgia, kicking is not really an option. (Smile)
Actually, I have begun riding a stationary AirDyne bike (not using the arm functions)…it took me 15 minutes to go one mile when I began Memorial Day Weekend. Yep… It hurt. And not only did it hurt, but it hurt for days after. Maybe it is because I kept doing it each day…hmmm
Here I am, almost Labor Day Weekend and I am now up to one mile every 5 minutes (the arm functions make my shoulders scream in pain, so I barely use them)…but the bicycle part I can now do a mile in 3.5 minutes…on a good day. Most days I do up to three miles in succession, but I aim for a minimum of three miles each day-or up to five if I possibly can!
Yes, my endurance is improving…yes, my pain is still there…but my overall body functions have improved.
What does that mean…?
Well, for starters, my heart doesn’t palpate as frequently. My blood pressure has improved. My blood sugar levels have gone down. My energy level has slightly improved (which is saying a lot considering my energy level was pretty low), and my overall mental cognitive abilities have improved, as well.
Yes, riding the bike has helped me.
Do I still hurt? Yes.
Do I still wake up feeling run over? Yes.
Do I still struggle getting up and down from a chair, rolling over at night in bed, walking, etc? Yes.
The way I see it, the bike is helping my cardiovascular system, improving my general well-being as well as my brain. The pain will be there anyway, I might as well improve my internal health.
As for the Covid-19…so far, so good.
Yes, I believe in this virus. I have some distant family that have all had it. It is real and it can knock you off your feet for weeks. I DO NOT want it.
Truth be told, I CANNOT imagine feeling any worse than Fibromyalgia makes one feel.
Over four times I have felt like I was “coming down with something”…knowing it was the beginning of a Fibro Flare…and praying it wasn’t Covid-19. Of course, it was a Flare…and those are hard enough.
Yes, I am still here…living life reclused…online shopping…grocery pickups…visits from across the yard…wearing masks…washing my hands for 20 seconds throughout the day…using ridiculous amounts of hand lotion afterwards….and pacing myself…resting…fighting the fight that Fibromyalgia brings…
But still here I am and happy to be! Pain and all 🙂
Don’t you hate it when people who don’t know how you really feel offer you advice on how to feel better? Or worse, they tell you everything they think you are doing wrong and how they think you should fix it…then you would not hurt so bad physically?
If you suffer from any type of chronic pain condition and this has happened to you, you know how frustrating it can be. I am a Fibromyalgia sufferer and warrior. I fight the pain every day. When I fall into a flare, the shadow it casts is a seemingly neverending tunnel of pain.
I have been in a Fibro-flare for almost a week now. I do not know what caused it, but here it is to grace my body with various pains in all my joints and everywhere in between, 24/7, even waking me up at night.
I know at some point the flare will cease, but until then, I keep on going. I push myself to get going in the morning because I don’t like giving in to the pain, even though my body is screaming at me to rest. Rest can have a negative effect in that getting up again is like starting the whole day over and the pain will seem more intensified. Sometimes stopping to rest hurts worse than keeping going.
Today is a rainy, dreary day, which has only made the pain worse. I have been moving very slow today, reading my Bible and making a pot of chicken noodle soup. My head feels like it may explode, but so far, so good.
Emotions are a trigger for me, too. I do my best to keep them in check, until that blessed person starts in on the…you wouldn’t feel like you do if…if…if…Spoken by a person who has NO IDEA what it is like to have FIBROMYALGIA.
So, I do my best to avoid such people.
I have had this condition for over six years and I have learned how to live with it and live thorough it. I have not arrived, mind you. But I am managing well and with what works for me. Those that try to upset my apple cart are those I try to avoid.
I hope you have learned to walk away from those who offer their prepackaged help and not allow it to upset you.
I pray you are making it through your day, no matter what the weather is like in your neck of the woods.
To those in a Fibro-flare, my prayer is for peace over your world and peace within yourself to handle it. May the Lord grant you that today.
I am a sufferer of Fibromyalgia…I have had a pretty crazy winter so far and this blog was not something I could keep up with. Let me backtrack…
I am a mother of ten children, wife to a wonderful husband of almost thirty years. Last fall, my last two sons at home joined the United States Marine Corps and is currently at MCT preparing to go off to their chosen MOS school. I traveled to see one son graduate boot camp in January and my husband went to see the other one graduate in December. (They each were put in three weeks apart).
Christmas and the New Year fell around all of this. Both sons got to come home on leave, but not at the same time. My “momma” spirit desired to make each son their favorite meals while home. It was a glorious time, but also a rough one for my Fibro body.
Would I do it again…absolutely!
I now have three sons serving, including my new Marines and one that is a three year U.S. Navy Submariner. When they come home on leave, my life stops and I cook them everything they crave!
It’s a Mom thing!
I have homeschooled for over 22 years and still have three more at home to educate. My husband also has Myelofibrosis, a form of blood cancer; his is defective red blood cells. He still works everyday, except when he is being treated at the Cancer Center–He is an inspiration to us all!! However, he is blood transfusion dependent, on average every 10-11 days, and is also on some heavy duty chemo-type meds, which make him suffer from Chemo induced stomach issues. My life is quite busy, hence the neglecting of this blog.
So, that being said, the question may be…How am I doing?
Hmmm…
I am currently sitting alone at a state park at the request of an older daughter who feels I may need a little “me” time…time to collect my thoughts, get alone with God…pray for my family without interruption…get alone with The Word of God in the new journaling Bible I purchased just for these “get-away” afternoons. Click here for the one I bought.
Today I felt I was to reach out to the cyber world…letting you all know I am still here…
Somewhere…
Surviving…
My plantar fasciitis is better, but walking weird for the past 9 months has me now with Extensor Tendonitis. I actually think it hurts more than the fasciitis. Well, maybe not worse…but a different kind of hurt. I mean, like walking is not something I can do well anymore. I have to walk a lot when I go with my husband to see his Oncologist at a large mid-western cancer center and he has the various tests done several times a month…The Fibromyalgia pain alone is hard to muddle through and the days that follow a trip are hard on my body.
So, how am I doing?
Well, the best I can be with God by my side.
I take things a day at a time and a moment at a time, rest when I can and pray- a lot.
I have learned to live and maneuver with pain. I know that this is the life God has given to me and I am content with it. Now, that does NOT mean I have given up. Quite the contrary!! I still make wise food choices, try to exercise as often as possible and rest when I can. It is a contentment of me knowing God’s GOT this!
For the past few days I have been visiting my Navy son in Florida.
I was really hoping all this Fibro stuff would just melt off me like a dripping popsicle.
Unfortunately it has not.
In fact, I have learned that the south and I do not get along at all. From being overtaken by allergies (help me, Claritin), to waking up each day feeling like my body is broken at every joint (do you know how many joints there are???), to the sun wreaking havoc on my skin, my Fibromyalgia has definitely NOT melted off.
Instead it is like the symbiote in the early Spider Man movies when Peter Parker was overtaken and could not take it off.
Yep. That is exactly how I feel. Overtaken. Pain that is stuck on like glue.
But, amidst all the pain, using my “Body Back Buddy,” taking Ibuprofen just to walk the pier and enjoy the ocean, I have seen the Lord here in the beautiful scenery and smiles from my two children I have had the pleasure of spending a few days with.
Fibromyalgia does not have to confine you to a bed. You must possess the will to get out of that bed and get through your day!
Today I awoke and my body feels like it is broken into a million pieces.
So, I take things one step at a time.
You need to communicate with the people around you that you move slowly in the mornings (or all day…).By letting them know what to expect, it will lesson your anxiety about meeting any expectations they may have.
For example, when we arrived at the beach, I told my son and daughter to go on ahead of me and that I would be along when I arrived. (My plantar Fasciitis still keeps me from walking well…).
By communicating, it helps everyone.
Because of the fasciitis, I have learned how to rewalk slowly and deliberately helping my feet to handle the journey of the day. (Thank you Vionoc shoes!)
Yesterday I used my Body Back Buddy while my son showered, allowing me some relief without causing him to feel like he overdid the day’s activities with me.
I did not do anything I did not want to do. But, by doing, it causes me more pain.
People without Fibro don’t understand that, which is why communicating is vital.
So whether you are traveling or just hanging with your daily routine, communicate how you feel, or how you will need to get through your day.
Each day is a gift. Today I am blessed to be with my son, who graduates from Dive School with the United States Navy. Oorah!
Today I am just writing a blog about living with Fibromyalgia.
What does that mean?
It means that I am just a normal person whose life has ups and down same as anyone. Sad days, happy days. Emotional days and steady days. I am just your average Jolene who has a life she is trying to live each and every day.
It just so happens that I also suffer from a multitude of chronic pain issues. Like in every joint.
Today I am also suffering from eye problems. The whole time I am typing this my eyesight is blurred. I wear bifocals now and I am constantly moving my head up and down looking for a clear row to see through. Not every day is a bad eye day, but today is.
Fibromyalgia sufferers can have problems at any time on any given body part. From the head to the toes. Random pain. It can last for one minute or one hour…or longer. It is a part of the condition.
I have a husband with blood cancer, two sons in Marine Corp boot camp, one son in the Navy, and a family bluegrass band that is still kicking after the boys departure and variety of farm animals to take care of. I home school, and have for over 22 years. I love my busy life! I have a great family! But I also have Fibromyalgia.
Today is a wet, cold, dreary fall day. I used to love these days. I still do, to a degree, but the pains these types of days bring me is not lovable.
On top of that, my basement began leaking (again) and the morning was spent using the shop-vac and trying to find the leak. Add that my girls are at their sisters and my hubby and I are the only ones home!
My body aches! So does my husbands. His condition makes him tire way too easily and energy, for him, is scarce.
Let’s just say I wish the sun were out.
Today I am living life. Today life brought me rain and a leaky basement. But, today also brought me comfort in knowing I have another day yet to live.
I try to keep my blog topics on the lighter side of pain…which is somewhat of a challenge since pain is my daily companion.
Take today. I am dealing with the pains from the past 72 hours of non-stop preparing for a double going away party for our two sons who have joined the United States Marine Corps and will be leaving in a couple of weeks. We had over 75 people on our property two days ago. It was a jolly time and the fellowship was sweet!
I was an emotional basket-case that day…so many people who came to wish our sons farewell…my body felt like a broken ceramic pitcher that had been glued back together and had just sprung a leak!
Yes, the party was 48 hours ago. The day after the party my body just went Ka-put! Today I am mustering just enough energy to get through the day.
My Plantar Fasciitis in both feet has me barely able to walk…one foot is in an air cast due to the torn fascia tendon from three weeks ago.
I would do it all again for the sons I love and will miss desperately. My body may disagree, but that has been my chief complaint with Fibromyalgia…
What my mind wants to do and what my body is not able to perform doing.
The day of the party we grilled over 20 pounds of BBQ plus sides and desserts (most of which friends brought to help! Thank you friends!!) However I still made the cupcakes in their honor but had to delegate the rest.
Speaking of delegation…am I the only one who hates to delegate tasks????
In my pre-fibro life, I did it all. I did it all happily and (without) complaint…(usually, but I was organized down to the crossing of the “t’s” and dotting the “i’s”.)
Now I make lists…and forget where I left them. I have thoughts and cannot remember them.
I have a white board in my kitchen for my thoughts and “plans” but I can rarely see them through without the extreme painful joints and daily exhaustion.
So. today my blog is not the most uplifting. Today I am just a “normal” Fibromyalgia sufferer who deals with the pains from doing something at the time she does it…and the aftermath of some 24-72 hours later.
What will tomorrow bring?
Ask me tomorrow!
Til then…I will keep on keeping on!
May the good Lord give me the strength to endure this daily life with Fibromyalgia!
While I suffer from Fibromyalgia, which causes a host of debilitating pains, Plantar Fasciitis and Burstis is now among the list. In fact, the heel pain I experience has now become my constant companion.
Almost two months ago I had cortisone injections in both heels to help relieve my pain (and actually be able to walk normal!). And I did…for about six weeks. In fact, I had forgotten just how bad the pain had been.
Enter the past two weeks of my life…
I was walking across my driveway when suddenly I felt a “pop” in my left arch. For the next few days it felt like my arch had “dropped.” It did not hurt much (we Fibros have incredibly high pain tolerances!!) But it left a weird “dangling” sensation whenever I was not wearing my doctor recommended orthodic shoes…like after a shower.
Then, several days ago, both my feet began to really throb, even with the shoes on. Three days ago my left heel suddenly felt like it had been split wide open. The pain I experienced was nothing short of “bite my hand, oh, my, will the pain ever stop!” kind of pain.
Needless to say, I have been chair bound, on crutches just to get to the bathroom, icing my heel and taking Ibuprofen for the swelling.
My doctor prescribed me a Cam Boot Brace, but the lovely healthcare system says the usual wait time for processing through insurance is a week…or more…So, I ordered one from Amazon.com, but even that one will not be here for two more days!
I have a sonogram appointment this coming week to check for any tears and a possible MRI in my future.
So, is there a connection between Fibromyalgia with Plantar Fasciitis and Bursitis? I mean, would I have had this problem if not for the Fibro?
Well, according to the charts, I am slightly overweight, which I have been working on and have lost 12 pounds since I read the chart…haha (another post about that coming soon!)
I have had ten children which I have/am homeschooling (just started year 22!), so maybe the Plantar Fasciitis/Bursitis was inevitable for me.
Regardless, I have it now, and I have it good.
If you are suffering from the same pain, stay tuned! Perhaps my experience can shed light to help you!
Today I am zombified. Is that a word? Well, when you have Fibromyalgia, it should be a word.
My definition of zombified is when you wake up and suddenly realize your body and mind don’t work. You feel intense pain in all your joints, down your spine…everywhere, kinda like the immediate onset of influenza! Your mind is mush and you can barely function on any level. You are staring out into space and would be content to just sit all day…and do nothing, because that is all you can do.
Zombified…That is me today.
Having Fibromyalgia, I never know what a day will bring. Today it brought this.
Last week in the Midwest, the weather brought a heat advisory with humidity in the upper 90’s and the heat index of 106. It was so hot and muggy you could scarcely breathe outside. Oddly, my Fibro symptoms were mild.
Yesterday a cold front came through and knocked the temps down into the 70’s with the humidity even lower! yeah! Well, “yeah” to enjoy sitting outside, but NOT “yeah” to my Fibro body. The switch in atmosphere has done a number on me and now I am “zombified.”
Three cheers for Fibromyalgia!
What, no cheering? Even I can hear that!
I pray you have a great day no matter where you are…and how you feel.
When you have Fibromyalgia and your brain does not cooperate with what you need to get done, it makes getting through the day quite the challenge!
This morning I set out to check off my list of ” things-to-do-today” as I did them. However, I had numerous interruptions; ie, the internet man showed up earlier than expected to fix my modem, phone calls and emails kept interrupting my train of thought, and refinance junk suddenly had to get done right then, and, well, MY list of things to do did not get done!
Later, when I tried to focus on the list, my brain just shut down…like out-of-order, shut down.
I used to be on top of EVERYTHING! I was the queen of orderliness and the go-to person for accomplishing a task.
Where is that person??????
I don’t want the label of “Fibromyalgia” to define me. What I mean by that is just because I have it doesn’t mean I don’t have a life. It is just not the life I used to have.
Readjusting to the new me has been an on-going issue for me.
Like today.
My brain is done. I am typing this because I need to vent a bit. If you are still reading this then I thank you for “listening”…
Only fellow chronic pain sufferers understand the battle we face. They call it brain fog, and that is how I feel.
FoGgY.
This blog began to help me express how I feel and the battles I face daily as well as the mini-victories I receive each day.
Today my brain was overloaded and it just shut down. By stopping to write, my hope is that my brain will re-boot itself so I can accomplish something on my list. Not for the lists sake, but because I have relatives arriving in two days, lesson plans to finish for our upcoming home school year and because my personality just desires a check on that stupid list!
Yes, I have Fibromyalgia. Some days I think it has me, too. But I understand that today is gonna have to be one of those days I cannot control.
It is what it is.
That list will just have to sit here another day when my brain allows me to focus.
Good thing it’s written on pretty paper, eh? Humor is good for the soul!
My husband has cancer of the bone marrow called Myelofibrosis. He has been receiving blood transfusions for over a year. He was receiving them about every 14-16 days until this past winter when his body began requiring them about every 9-12 days; 2 units each time.
As a Fibromyalgia sufferer, I deal with the ups and downs of daily living and how it wreaks havoc on the Fibro body.
Add the stress of a loved one’s illness and you can quadruple that effect.
My husband has Myelofibrosis. In this, his red blood cells are affected. They do not mature and subsequently, he is chronically anemic. He also has Hemocromotosis, which is iron overload. In his scant few red blood cells he has, there are 1000x more iron than the average person has whose red cells are healthy. Strangely, these two conditions are rarely seen together. To treat the one, you get blood. To treat the other, you give blood. He cannot give blood because his red blood cells don’t mature. When he receives blood, the influx of iron it brings can cause iron overload, but he needs the new red cells to keep on going or his body’s red blood cells would eventually cease. We don’t want that!
Myelofibrosis is considered to be a chronic leukemia- a cancer that affects the blood-forming tissues in the body. Myelofibrosis belongs to a group of diseases called myeloproliferative disorders.-The Mayo Clinic
It has caused my husband’s spleen to enlarge and a host of other symptoms. He is taking two medications to keep the spleen down and another to combat the amount of iron his body receives with the transfusions.
Those transfusions give him red blood cells which provide him with renewed energy to keep going, but the amount of iron they bring causes his Hemocromotosis to escalate. This is an on-going battle that is now (on average) every 10 days.
(In a healthy person, immature red blood cells mature, live a while and then die off. His never mature, hence the need for transfusions. As those transfusion cells die off, his count diminishes and he needs more blood to keep going. It is a vicious cycle.)
My husband is a champ. He still works daily. He still looks like a normal, healthy person. Like Fibromyalgia, Lupus, etc., it is dubbed an “Invisible Illness”-the kind where people don’t believe you are actually sick…
We have tried over the past 5 years living in a relatively “as normal as possible” state. That means keeping as much of our lives as regulated as possible and keeping our family life going, including our family’s Bluegrass Band, running smooth.
I do my best to pace myself to keep the Fibromyalgia levelized. Is this possible?
Seemingly, no…
Every 10+ days I sit with my husband for 5 hours or so while he receives his 2 units of blood. We visit, play cards, think positive thoughts…but the sitting upright can have catastrophic effects on my Fibro body that lasts for days. (I am sure the stress of it all does not help. Throw in the pre-menopausal hormones I am now facing plus the raising of three children (out of ten) left at home children-all girls left-ages 10, 12 and 15. Hormones all around me!!!!)
My battle with chronic, daily pain is a part of life for me. Fibromyalgia won’t kill me (although some days I feel like it could!)
What my husband has will kill him. I get through my life of pain so I can help him; help with our lives together. Those catastrophic days are nothing compared to what he deals with. I try to pace myself and be ready for whatever comes our way where his cancer is concerned.
The Lord has allowed me to have this condition so I would slow down my life to accommodate my husbands new slowed down life with cancer. I will take the pain…one day at a time!
I awoke to a beautiful, crisp spring morning. The breeze was coming out of the NNE. I poured a cup of decaf coffee (I have a PVC Heart Arrhythmia which means no caffeine). I went outside to sit on my new wooden swing and took in the day!
It almost felt like autumn!
Here in the midwest we have had our share of rain. That is why my morning was even more meaningful…no rain!
My daughters and I enjoyed the time outside for an hour or so, then onto breakfast and chores!
Today’s schedule showed weeding and woodpile. Hmmm…both not good for a person with Fibromyalgia, but, it needed to be done!
I enjoy doing yard work and set to it!
30 minutes later and the flower bed I assigned to myself was done. My back was, too. Lower burny-achey, locking up…
Lunch time and then, the wood pile!
So over the winter a huge tree fell down in our woods due to the storms. This spring my son-in-law came and cut it up, split the pieces and helped my children haul it up to the designated location.
Today we have a HuGe pile of wood for our fireplace this winter! (Happiness all around!)
However, my husband wanted that pile stacked. Needless to say, 3 hours and 10, 8’w by 3’d by 6’h rows later, we have accomplished that task! ( He actually asked the girls to do it, but, hey! Why not supervise and enjoy the time spent together?)
My body handled it well. Actually, the day was so beautiful it made the job almost fly by. (Singing together helped, too!) But by row 3 I was really feeling the pains of a Fibro body! I rested a bit while orchestrating the girls on how to stack properly, then back at it I went!
My adrenaline was surging as the pile slowly dwindled down, giving us all a surge of “I think I can, I think I can…”
Well, it has only been 1.5 hours since we stopped. I have had a hot shower and am back on my wooden swing enjoying the evening, which is as gorgeous as the morning was.
However, I am stiff, sore, locked up and wondering if I will be able to even get up out of this swing later…
Oh! How I miss the yard work and only hurting because you worked hard. Now, with Fibromyalgia, I feel run over and left for dead after I’ve worked hard!
Sometimes when I have not worked at all…
Alas! The beauty of the day has kept me going! So has working along side my daughters! I have missed that so much and I know I will pay in pain for it in the coming days, but today was worth it!
I ought to know…I have recently seen a Podiatrist for my chronic heel pain. I was thinking Fasciitis of some sort. The pain in both feet began a long time ago…yes, like years…but it was very intermittent and I figured it was due to what I had done that day, my shoes (or lack of…hey, I always loved going bare foot!!), or, most recently, to my never-ending list of Fibro symptoms!
However, over the past few months my feet began to hurt all day! Literally, as soon as I put my feet on the ground first thing in the morning, the pain was bad. Today, the pain is excruciating to the point that it hurts to walk even a few steps, especially after sitting a while.
So, off to meet the Podiatrist!
A routine exam showed Plantar Fasciitis. An ultrasound of both heels showed a thickening of the fascia (I was told normal was 3mm…mine was 1cm…dealing with such small measurements I never realized that a 7mm difference was that big of a deal, but in this case, I guess it is!) Plus, I had several “pockets” where the bursa had fibrosis. I was told to come back for a Cortisone injection. (Actually, “Multiple injections in each heel,” he said as the ultrasound wand moved across the sole of each heel…I told him that “s” on the end of injections was pretty crucial to my mind wrapping around this new thought of coming back…)
The Podiatrist also told me to purchase some shoes called “Vionics.” This brand is supposed to help with Plantar Fasciitis and give better arch support. I have ordered, and received, my first pair. Click here for the type I purchased.
So far, I have worn them to town grocery shopping and my feet are doing much better than before the purchase!
All in all, I am happy I went to the doctor…well, I think I am…those injections are in 10 days…
My Fibromyalgia pain is always there, hovering, sometimes just on the surface, ready to become a flare at any moment.
I have recently had a few weeks where my pain was manageable and getting through the day was not too bad.
About a month ago I had a flare that lasted 6 straight days. It was a beast! The pain, cognitive dysfunction, stress and the desire to sleep all the time was a 24 hour issue! In fact, I found myself waking up several times a day in different places in my home to where, I guess, I just lay down to rest and fell asleep without meaning to. It was a dreadful week!
Ironically, these past few weeks after that has been relatively pleasant for me. Crazy, since I am always in varying pain from the Fibro.
I try not to live in fear of an impending flare…but on a day like today, when it has stormed all night, emotional stress for two days prior, grocery shopping two days ago and spending yesterday catching up on some much needed mending, I awoke to nothing but pain that I know will be difficult to manage.
I have that bruised feeling all over my body in patches that made me hurt to roll over while sleeping, causing me to wake up constantly. Plus the added feeling that your ligaments are being pulled off your joints. In the past, those have been signs of an impending flare…*think positive…*think positive…
A recent trip to the Podiatrist shows both feet with Plantar Fasciitis and possible Bursitis, which a sonogram will deny or confirm in a couple weeks. So, on top of my “normal” Fibro pain, I now have the added issue of struggling to walk…more so than usual!!!
So, today is going to be hard. I pray it is only today and not a flare rearing its ugly head.
I pray your day finds you rest and peace from the daily pains that may plague you.
I consider myself to be a relatively happy person. My life can be difficult with the constant pain from Fibromyalgia, but if I can find the happiness in a situation, it is better for everyone in my life.
If I am around people who are gloomy, it does nothing to help my pain. In fact, it aggravates it. I try not to let other’s moods effect me, but they do.
No where is it written that life is easy because you have no physical pain. No where is it written that life is easy because you don’t.
For some chronic pain sufferers it is downright hard to live daily. For others, the hardships are of their own making because of their negative attitudes and non-acceptance of their pain condition. And still others seem to have that effervescent joy no matter what pain they are going through. They may have continuous pain that no one can see, but their smile would never make you think they are suffering at all. I am not speaking of a fake smile, either. I am talking about a genuine, honest to goodness smile that radiates from within. You know the type. You probably also know the opposite type I described above.
Now, the question is, which type are you?
I want to be the type of person that people could scarcely tell how badly I hurt…and mean it.
I recently went to Arizona for eight days. I went for many reasons, but while there, I secretly wanted to wake up one morning and have all the pain be gone. You know, due to the fresh air, the climate, the fact that I had no obligations or stress to speak of…maybe one of those reasons would cause my Fibromyalgia to just evaporate and drift away on the peaceful winds of the mountain air.
Unfortunately, I am not able to report this to have happened.
Instead, I was reminded that I DO have Fibromyalgia and it is NOT going away.
The change in atmosphere did me good in other ways, but I still had to pace myself, take Ibuprofen as needed, and rest often. But through it all, I did my best to smile…a genuine smile, which I did have readily available.
Acceptance of the medical condition you have is vital to how you will get through each day.
My prayer is that you find peace along your journey and discover the smile that is waiting to rise to the surface of your face!
May Jesus help you find your way to Him…and that smile!
God Bless-
~The Fibro Momma of Ten
Springtime in the Catalina Foothills in Tucson, Arizona.
The amount of stress a person is under can greatly affect how they feel physically, especially if you suffer from Fibromyalgia.
Emotional stress might be hidden beneath a facade of, perhaps, a smile and pleasant countenance, but underneath it is causing damage to your body.
Emotional stress eats away at you until you suddenly split wide open with all the suppressed emotions just bursting forth in an uncontrollable manner.
When this happens, it can be a great release to your physical form, but the aftermath will wreak havoc for days…especially if you are a sufferer of Fibromyalgia.
Suppressing those emotions takes a lot of energy.
Carrying the burdens of others for the sake of others can be equally detrimental to one’s health.
Sometimes you may feel you have no one to talk to who would actually understand how you feel.
There is One whom you can speak to.
One who completely understands and is there for you at any time of the day or the night.
Jesus listens to your heart before you even speak audibly. He knows your inner most thoughts and feelings.
Speaking to Him helps you muddle through the tangled mess your mind is in.
Speaking to Him helps release the pent up frustrations of a forced smiling countenance and allows you to smile with a genuine sense of freedom from the cares that once oppressed your soul.
Give your cares and anxieties over to The One who cares more about you than anyone else ever could!
Jesus cares…that is why I write this today.
You DO NOT have to go through physical and emotional pain alone.
Cast your cares upon Him for He careth for you.
If you are dealing with emotional issues that is causing your Fibromyalgia or Chronic Pain Disorder to flare, give it over to Jesus.
I have Fibromyalgia. I also have the tendency to be ridiculously meticulous.
An example of this is during the Christmas season. I may (try to) relax in a chair while sipping a festive cup of coffee from a festive mug. After getting all comfy, I begin to admire my beautifully decorated tree…only to notice one (or two…or…three…) ornaments that just have tobe moved to balance out the tree. (Maybe the colors are too close together, maybe the placement is not quite right, maybe it is my own quirky hangup…)
Regardless, I cannot think about anything else, and so, I get up and fix it (or them). (After all, who can relax when the tree is not precisely perfect???) Unfortunately, that person is me.
Okay, but what about those pantry shelves?? What about them?
Do all those cans have to have the labels facing the same direction? I mean, what about the canisters, the boxes of cereal…
Okay, so maybe I am also guilty of perpetually reorganizing my cabinets to make them “just so”…doesn’t everybody???
Another example may be my inability to relax completely until the dishes have been put away, floors swept, dogs taken out, laundry done, etc. This personality issue makes my Fibromyalgia flare!
How about how I can literally see things happen before they do. It is a terrible trait, but I have watched glasses of milk tip over, a child trip over a toy and the rice burn…all before it may happen…until I pick up the toy, turn off the stove (and check the stove three times to make sure I really did turn it off) and ask the cup owner to please remove the milk before it tips. Would those instances have occurred if I had not tried to prevent it? We shall never know, but it makes me less anxious knowing I did try.
Some may say I am only being a Mom. Maybe I am. But it is that type of “phobia” or “paranoia” or OCD symptom that prevents me from just walking through the house from Point A to Point B.
I continually get sidetracked by things out of place. A sock here, a game there. Colored pencils left on the counter, the silverware drawer all in a shambles…doesn’t everyone know that forks stay with forks and spoons with spoons??
Well, given the definition of OCD, I would wager I have a symptom or two, but not enough to qualify me for a complete diagnosis in the affirmative. I am just a perfectionist to the highest degree and have multiple idiosyncrasies which can interfere with my Fibromyalgia.
A lot of it is personality. Much of it is all a part of living with Fibromyalgia.
While at my daughter’s new townhouse, I found myself straightening the mini-blinds, fixing a place mat and being (over barringly [is that a word???]) concerned with the steps downward and someone falling…like me!
I needed to make myself stop the micro-scrutiny of lack-of-symmetry-issues and just notice how quaint the dwelling was and how charmingly she had decorated it. Once I did, it was easier…
I think the daily, never-ending pain that I live with has made me more critical. Not intentionally, mind you. But staying positive when constantly in varying levels of pain is quite difficult to do.
Add OCD into the mix and well…it would be a horrible mix.
So, here is to seeing only what needs to be seen; not letting the “little things” bother you and trying, trying, to get through the day with a positive outlook when your body feels like it is falling apart!
And let’s not forget to curl up with a comfy blanket and let our body relax from all the pain… and not let the fact that the table needs dusting, bother you.
Why is this noteworthy? Because I have a lot of children who still live at home. I have home schooled them for over 21 years and still have many more to go. I do not remember the last time I was home alone…
Now, the house was vacuumed and the dishes were done prior to their departure…by them! (They know I can relax better when things are organized and decluttered…) I am blessed!
So, here I am relaxing.…
It is quiet…except for some soft music playing in the background, which on a normal day, I would never attempt, because I would never be able to hear it.
And as I sit here and type, I can feel my back locking up…a sort of burning pain, and I know I am limited to how long I can sit here and type. My body clock has begun ticking….
Pain is a part of my life every day.
I believe it is important (especially for adults) to let your mind wander and daydream. While I do not get that opportunity often, I know it is important to let your mind decompress and wander off to some sort of La-la-Land…. multi-tasking is over-rated and I for one feel that has contributed to my demise.
I once was the queen of multi-tasking!
Multi-tasking is one thing when you are bouncing a baby in a sling while stirring a pot on the stove, or sewing a pattern while taking a moment to change a diaper, or plan dinner. But mental multi-tasking is a stress all its own.
No one can handle that for long; I should know.
But, home schooling is multi-tasking at its finest! Switching gears from 2+2=4 to reducing fractions to solving a Sigma Notation Equation and back to 5×8=56 can make anyone brain dead by nightfall. After 20+ years of elementary math and 10 years of higher math woven throughout, oral reading of Dr. Seuss to The Chronicles of Narnia to Jane Austen, teaching the fundamentals of writing basic sentences to editing a high school Thesis paper, and then back to the ABC song…all in one day times 5 days a week, times 40 weeks per year, times 20 years…well, you get the idea, and this Momma’s brain is like…wha…??
Don’t get me wrong…I love what I do!
But now that I have Fibromyalgia, multi-tasking and I are not the same. Good thing is, I now only have three children left to teach and the elementary part is almost over, so the switching of gears is not as complex.
My children all have their routine established and I (do my best) to pace myself daily. We all work together (most days!) and school is quite enjoyable!
Throw in the always in use…never can get away from…smart phone and one’s mind is slowing frying…
Yes, I have a smart phone, and yes, I hate how it has become a necessary part of this life. It makes switching gears almost impossible.
So here is to S-L-O-W-I-N-G down, stopping to smell the roses, taking one day at a time, enjoying all the little things in life, and all the other cliche’ sayings we have heard over the years. Someone wrote them for a reason…
I hope you get to take some time today to just stare out of the window and let your mind wander…
I have multiple days in a row where I seem to have more energy and I also have trouble sleeping.
Then, I have found the opposite to be true; days in succession where I am so fatigued I can barely function.
Whether I have energy or am fatigued, every single day I hurt somewhere.
Mostly joints and deep muscle aches; a burning sort of pain, sometimes sharp and stabbing.
Sometimes it is like I can feel the ligaments being pulled from the bone.
But on those fatigued days, the pain seems worse.
On the “I cannot sleep” days, I seem to suffer from Fibro brain fog issues.
I have charted this for over a year and can see a “rollercoaster ” type wave sweeping over my months.
Is it hormones?
Is it stress?
Is it from cleaning (like sweeping, scrubbing bathtubs, etc?)?
Is it the midwest weather where the temps fall and rise every other day this time of year causing the barometric pressure to wreak havoc on this Fibromyalgia body?
Does anyone else feel this way?
Today, my brain would not cooperate.
Tonight I can literally feel my joints begin to scream as I struggle to find sleep.
Today the high was 59 degrees. It will be 23 degrees when I wake up tomorrow.
Ah, Fibromyalgia!
You NEVER know what a day will bring to your body!
May your day bring you a clear mind and comfort in the pain.
I have just been through an awful ten days of pain and a seemingly never-ending flare-up from Fibromyalgia.
When a flare starts, it may end in an hour, it may end in a day, but sometimes it goes on for over a week.
When you suffer from Fibromyalgia you NEVER KNOW how long a flare will last.
This one started (unexpectedly) days before my cycle began and lasted through an overlap of a strong headcold which knocked me off my feet and even gave me a low-grade temperature. The aches from the cold were quadrupled from the Fibro and then multiplied to where I could barely function because of it.
I curled up on my couch with a comfy pillow and soft blanket and could not move for two whole days. (Except to constantly blow my never-ending runny nose…)
When one is in the middle of a flare like this, it is hard to see through the pain. You know it will eventually end, but at that time you cannot see it, and that can be quite overwhelming.
Add emotional anxiety to the mix and you may be a candidate for the funny farm.
Feeling this way is not funny. But when you have Fibromyalgia this is all a part of a flare-up.
Pain in the bones. Aches in the muscles. Joint pain mirroring arthritis…in every joint.
Ugh! Do you know how many joints we have?????
It’s enough to drive you bonkers!
And then…one morning, or at one point in the day, it stops.
You realize the flare is over and with some hope in your mind, you expect all the pain to leave with it.
But is doesn’t. It is still there…only milder, duller, like it’s been “shelved ” for later. You can almost feel it hovering.
But the “flare” is gone…for now.
Don’t bother racking your brain for what caused it. Fibro-fog won’t let you remember, anyway.
Ah…such is the life of a Fibromyalgia sufferer.
Yesterday I saw no end to the flare. Today, I felt the flare leave. How will I feel tomorrow? Ask me tomorrow!
I took a few months sabbatical, not because I wanted to, but because my life was not conducive to stopping to write this blog, let alone stopping for anything else!
At the end of October 2018 our 23 year old daughter got engaged. (applause all around!)
And then it happened-
They desired a January 2019 wedding! Not much time to plan, eh? I mean, we had Thanksgiving, Christmas and New Years to get through (and [try to] enjoy) So…off we go!
But it gets better!! (note the sarcasm) The newly-engaged couple requested the reception be held at our home…which, at the time, was quite small and compact…
So not only did we have 10 weeks to plan a wedding, but we decided to through in a complete remodel into the mix! Are we crazy??? Some say we are….
Before the wall came out of our kitchen
Sidebar-
Now, for years my husband and I have discussed taking out a wall here, another wall there…maybe even making our garage into living space. But with my husband’s cancer, causing his red blood cells not to mature, thereby leaving him without a lot of energy, our one son working full time and going to college to be an accountant, and other son working a few days each week, not to mention our crazy life of playing Bluegrass Gospel music almost every weekend, well, you can see why we never embarked on such a task!
End of Sidebar-
Enter the Bride and Groom to be…
So, on October 26, 2018, we began to see our vision become a reality…with a time limit of completion of December 16, 2018.
Wall number one came out and a very long, thick and rustic beam was used to support the opening. I say “rustic” because three summers ago our sons had taken down a few barns, hauled the wood to our home, put up a new barn on our property and we had leftover beams from that project. The beams are literally 75+ years old!! Knotched and all!!
The same wall with the beam being put in
By the end of that weekend, another wall had been removed with the same beam-look added and a sub-floor was built inside our garage to bring the floor level to the existing floor in the house.
Wall number two out with sub-floor into the garage
On October 31 we held our annual Fall-Festival, complete with sugar cookie pumpkins, pumpkin pie and caramel apples (a family tradition for over two decades). We do not celebrate Halloween and the festival is our family’s replacement for enjoying God’s harvest!
Harvest Festival
One month later it was Thanksgiving and only half the remodeling had occurred. Our kitchen had been affected and cooking for that was quite the memory!
By December 16, we were close to our completion goal, but not quite done! It was December 23 when the last piece of trim was added and we called it “DONE!”
The entire remodel consisted of all new flooring…(tearing out old flooring was quite a feat!)…we did Board and Batton walls, which I painted a clay pot color to match our brick fireplace, adding to the rustic look. I even got an upstairs pantry out of the deal! (I have always had to keep pantry items in the basement, so this was a wonderful improvement for me!!)
Needless to say, we enjoyed Christmas immensely with all the new space and 15+ family members filing through! But I forgot to add that in the middle of that we had our daughter’s Bridal Shower and bride-shopping, Christmas shopping (thank you, Amazon!!) and wedding planning!
Our Navy son got leave to come home for New Year’s Eve and the wedding, making it the first time all our children would be together in years!
I tell you all that to get to what I learned about myself…
I am a creative person with drive, motivation and perseverance. I can paint just about anything and am also very crafty. I learned that when my adrenaline kicks in with a creative thought and the desire to see it come to fruition takes hold, it makes my endorphins kick in as well, allowing me the ability to keep going until the task is complete, without a lot of pain. The problem is when the task is done (or the day), my body then retaliates and the pain comes on super crazy-like.
During those crazy 9 weeks of non-stop, seemingly around-the-clock work, I suffered from countless Migraines(the kind that knock you our for hours), intense back, joint and deep muscular pain, a Tin-man sort of syndrome causing me to rely on my heating pad every night at the highest setting, hot showers, wrapping the knees, asking someone to rub my hands and back and Ibuprofen. There were times when my hips did not work, the dexterity in my hands went Kaput! and my feet felt like cement blocks. Everything throbbed, ached or burned and my body just screamed at me!
See, I helped with all the wall wood work and trim, sanding, staining, painting, holding up to be nailed, etc. I helped our sons paint until after midnight when they got home from work…not just because it needed to be done, but because I really enjoy doing it.
wood waiting to be stainedside view of the Batton walls by the coffee bar
I had too many to list times of “I cannot go on” and “I do not care if it gets done.” But then my adrenaline would kick in as my creative side began taking control…and I got it done! The whole remodel is actually one big B-L-U-R! My desire to get the house done and enjoy the holidays was stronger than my desire to wake up everyday to the immense mess and chaos of my house. (You know how well Fibros function in chaos!)
Now, had I not participated in the remodel, most of what I just described would have still occurred in my body, just not as severe. Or maybe it would have. With Fibromyalgia you NEVER KNOW.
Now it is the middle of January and I feel like I am writing about someone else’s life and my heart breaks for her!! But, it is my life and I am in love with all my space, new coffe bar and pantry!
Yes, the wedding was beautiful and yes, all 40+ people had room to move in our newly remodeled home for the reception!
Was it worth it? I would have to say “YES!”
Would I do it again…
Um…
What did I learn?
~That prayer is vital to get through one’s day.
~ That keeping busy with a fundamental purpose can help with pain-But NOT at the level of the busyness and stress I experienced. One needs to be realistic.
~One creative thought acted upon can make one’s day entirely positive and satisfying.
I am now back to our “new normal” daily routine and back to pacing myself. I hurt like always, moving super-slow at times and barely able to get of a chair. The fast-paced past 9 weeks plus two weeks of wedding craziness (did I mention I made the wedding cakes, too???), made me see what I could do while having Fibromyalgia.
But it was learned at a price.
Did I hurt more with the remodeling?
Yes, but I kept myself moving to such a degree that my body did not have time to stiffen, plus all the Ibuprofen only took off the edge.
I dragged myself to bed nightly and pulled myself up and out of bed each morning, knowing what needed to be done. And guess what?
Life still goes on and each day still needs to be lived.
However…9 weeks of non-stop is way too much for this Fibro Gal.
I am content to pace myself again…in my newly remodeled home!
The Dining RoomMy new kitchen and coffee bar!New Living RoomNew kitchen with two stoves!!
October. My favorite month of the year. Fall decorations, changes in the weather, pumpkins, windy days with leaves floating overhead…and Fibromyalgia woven throughout each day.
Also this month, I have had a daughter birthday…music way upstate…another daughter birthday…canning green beans and hot pepper relish…another daughter birthday…a music contest…a day spent shopping for flooring…a daughter’s engagement…more music…major renovations on our house like laying subfloors and taking out walls….music…wedding planning…doctor appointment for me…hours and hours of my dachshund in labor (they never give birth during the day!)…another birthday coming up, complete with a party…more music…
Well, that about sums up my life since the first of October! (And that is not including homeschooling, grocery shopping, laundry, cooking meals…you know, regular, everyday life).
Where does the Fibromyalgia fit in??
Every-single-day-
Every moment of the day and all in varying forms.
Recently my body locked up from the neck down-which lasted about 30 minutes, making me feel like I was literally in cement-(which is the fourth episode of that this year).
Every day my joints scream at me…and most days it takes a lot for me to function (brain fog).
This renovation we are doing inspires my creative genius, giving me a drive to get it done, which, in my experience, makes me think that creativity is a form of natural “drug” to help (at least me) get through my life of pain.
But when the day is over and my body is tired, that pain seems to multiply and overtake me.
It is a roller-coaster ride of never-ending pain!
There may be days (especially gloomy, cold and wet ones) where all I desire to do is curl up with a blanket and do…nothing. However, my life is not conducive to doing nothing.
I must be all things to everyone in my life…
Some days I am a little slower.
Some days it does not all get done.
Some days drilling math facts, reviewing vocabulary and spelling words and reading out loud to my kiddos is all I can muster.
Some days I’m like the Little Engine that Could and I say to myself “I think I can…I think I can…I think I can…”
I have yet to hear myself say “I knew I could…” without the pain from what I did…
But, it is my life and I am thankful for it-pain or no pain.
No pain?
I wonder what that would be like??
Have a blessed day and be sure to be the reason those around you smile!
I have Fibromyalgia and fight the pains in my body 24/7. It is a seemingly never-ending whirlwind of pain and labeled an invisible illness because those of us who have it look pretty darn good on the outside, but on the inside we are battling those pains through the smiles we have programmed ourselves to have.
Why?
Well, for me, because I genuinely try to find something to smile about…but usually because I hate that dread question of “So how are you doing today??”
Whoa, now! Do you really want me to ANSWER that…?
Well, okay, let me give you a glimpse of what my answer will NEVER be…
I am at the store and you see me and stop to chat…
“…um, thanks for asking. If you really want to know, as I stand here and speak to you, my body is screaming at me in pain and I am wondering what in the world I am doing here feeling this way. My lower back is yelling for the heating pad, my feet feel like they are swollen and my toes hurt with every step and it is painful to even walk and as I stand here I am wondering how I’m going to make it through this store and into my vehicle. My knees hurt so badly that I try not to limp when I walk, my fingers have lost their dexterity and it hurts to bend them, let alone hold onto the cart, and the haze in my head will either explode into a migraine or cause me to wonder what I was even saying to you in the first place….”
What was your question again?
Or I could respond with…
“Thanks for asking! My Fibromyalgia is still causing me issues, but it is nothing compared to my husband who has bone marrow cancer and at each weekly blood test, results could come back saying its turned to AML (acute myloid leukemia) and he will have to have a bone marrow transplant ricocheting us into a place we are not ready to go. His blood transfusions are about every 11 days and he still works full time. Oh, and did I mention we are completely remodeling our house without a contractor? Yep! In between those transfusions, my daily pains, and schooling all those kiddos, we have been taking out walls, putting up headers, painting, staining, laying backerboard and new flooring, wiring up new outlets for my coffee bar, trying to find the table to eat, homeschool academically, and play Bluegrass music on the weekends? I fall into bed at midnight after a hot shower, heating pad and (foot rub by a daughter, if I’m lucky) just to start again the next day knowing that my desire to have order in my home again is almost equal to how bad my body hurts each moment of each day…”
So, instead I smile and respond with…
“Doing great!”
And I really am.
Yes, my pains can be pretty bad.
Yes, getting up from a chair makes me look 88 instead of 48.
Yes, I have days I can barely get out of bed…but I do.
I have learned that my creativity is a natural endorphin for me and this whole house remodel has my creative juices overflowing, which, in turn, keeps me going.
When I stop to rest, the pains creep up on me and makes me wince, so I usually keep going.
I am exhausted!
So is my husband, whose cancer battle is red blood cells that his body does not allow to mature to give him the energy he needs.
I’d rather have the Fibro.
It won’t kill me…even if most days I feel like road kill left for dead.
I have Fibromyalgia. That dread condition where you hurt all over, all the time.
Today I find myself behind my computer with the Pride and Prejudice soundtrack playing and my grandson asleep next to me. Life is pretty good!
Today I have created Christmas cards online, paid bills and enjoyed lunch with my kiddos. My oldest daughter is over and that means my almost eleven month old grandson is here, too!!
It is my afternoon to babysit while all my daughters (there are 5 of them) go outside to prepare our barn for an upcoming wedding to be held here in January.
Yes, I said the words=wedding, barn and January-in the same sentence. And yes, I live in the Midwest.
The word snow is taboo around here until after the wedding.
And a lot of PRAYER is going up to the Lord for a pleasant weather wedding day. Cold is a given…heaters have been arranged for this blessed event!
Hold all comments, please. The young couple has this vision and it is up to us to see it come to fruition!
Back to my day…
My pain level is at about a 6-7, which is my everyday normal, with an occasional flare-up to a 9 or 10 sprinkled throughout my day.
Such is the life of a Fibro sufferer!
As I write this I can feel the burning pain in my back and spine, the electric zaps that pulse throughout my various body parts, and I am dreading getting out of this chair. The pain upon standing can be barely tolerable until the endorphins kick in…and then it only numbs it.
But as I sit and look down at this beautiful baby, all the pain sort of fades off a bit…if only for a moment.
This little corner of my house that has not been touched by drywall dust (we are remodeling) is my current sanctuary of peace.
Yesterday I had another episode where my entire body locked up for a good 30 minutes from severe pain.
Was it the weather? Was it lifting a heavy pot of water to boil pasta? Or was it just the Fibromyalgia doing what it does?
I had spent the morning making a lasagna with my daughters, complete with home-made sauce (the Italian in me always whispers home-made!) The lasagnas nearly done and lunch being eaten, I suddenly remembered the cold front was coming and I needed to pick the green beans and peppers before the frost that night.
Off I went with one daughter trailing behind as the drizzle of cool rain began.
Three large bowls later and we headed back inside, when, as I approached the kitchen, my body literally began to freeze up to the point I could not get my coat off.
The pains were excruciating!
I knew the feeling as it’s happened to me several times this year, so I got into a chair as quickly as I could before I was completely locked up.
Tears of sadness and pain slowly made their way down my cheeks. My nose was running from the cold outside, but I could not even will my hands to move, let alone raise them to wipe my nose. The only movable things on me were my eyes, which noticed the concerned looks on my three daughter’s faces.
That made me want to cry more.
Instead I told them that Mommy was being very brave battling this monster and that seeing their sweet faces only brought me tears of joy!
Twenty or so minutes later my hands began to move, then my arms and a much-needed Kleenex, and then Ibuprofen, then a walk down the hall to lay down and rest. Less than 3 minutes and I was out!
I awoke an hour later, still sore and “jointy”…I managed to climb into a hot shower…
After redressing (which is a chore in itself) I entered the kitchen to find the beans washed and snapped and hot jars in the boiler ready to be canned.
How blessed am I???
With a birthday the next day (actually two, my youngest daughter and I share the date…but I relinquished my birthday with aging years ago to her!! Ha, ha!) I still needed to make her an ice cream cake.
She has a sweet disposition and quietly came up to me and said she did not need a cake this year. (Bless her heart! She did not want me to feel more pain making it. That is all the more reason she will get one!)
And so, one mint chocolate chip and Oreo ice cream cake was born!
The Ibuprofen had barely taken the edge off, but I could feel it wearing off, nonetheless.
I spent the rest of the evening curled up with the almost birthday girl as she curled up with her “bestis birthday momma” and we watched a couple of movies.
This is just a day in the life with the new normal for me.
Fibromyalgia is a drag, but having a loving family makes it bearable.
I awoke this morning to a beautiful birthday card from my husband and wrapped presents in the family room from the kiddos!
Even with the rainy autumn day, it promises to be a good one…pain or more pain!
