My view from the hotel where my husband is in meetings all week.
This particular block of time in my life is one of a seemingly never-ending time of a major Fibromyalgia Flare.
I am listening to instrumental hymns and currently “Higher Ground” is playing.
Do you know the hymn?
I’m pressing on the upward way, New heights I’m gaining every day; Still praying as I’m onward bound, “Lord, plant my feet on higher ground.”
Refrain: Lord, lift me up and let me stand, By faith, on Heaven’s tableland, A higher plane than I have found; Lord, plant my feet on higher ground.
My heart has no desire to stay Where doubts arise and fears dismay; Though some may dwell where those abound, My prayer, my aim, is higher ground.
I want to live above the world, Though Satan’s darts at me are hurled; For faith has caught the joyful sound, The song of saints on higher ground.
I want to scale the utmost height And catch a gleam of glory bright; But still I’ll pray till heav’n I’ve found, “Lord, plant my feet on higher ground.”
That is how I feel today.
I am resting and watching the sail boats on the water, but the 3 day long migraine which has all my joints effected, is trying to distract me from enjoying the view.
Do flares ever come at a good time??
I admit that trying to lift my own self up when my body has betrayed me is terribly difficult to do. I feel very alone at these times. It is hard to be one’s own cheerleader and encourager when you feel like something the cat dragged home.
It is at these times that I feel God is closest to me.
When all I want is an understanding ear; a sympathetic ear, and maybe a Kleenex or two, plus time to get through this, it is God I turn to.
My body wants to scream and rationalize the ugliness of this dreaded condition, but in truth, all I can manage is a vacant stare out the window.
Today I had to be no where, no one was depending on me to cook or clean. I was free to enjoy the day however I chose.
This flare chose how I would spend this day for me. Even on more Ibuprofen than I’ve ever had to take in succession, I still feel all the pain radiate through my very core.
This flare will leave at any time, but for now, I must look to “higher ground.”
Jesus is my rock.
He will get me through it. He always does.
So whether on a trip to some place other than home or just another day at home, I pray you get through the flare when it strikes.
Okay, so let’s talk about the realities of having Fibromyalgia or another chronic pain disease. Few websites or blogs will touch on this subject. I will do my best to do so. See, I am a daily Fibromyalgia warrior. I fight the battle of pain every day and it is a very real issue for me. I want you to know you are not alone.
Fibros already know that just waking up in the morning can be overwhelming. That is when the positive thoughts need to kick in. You know what I mean…But how about when you cannot remember what day it is, what you have to do that day, or what you even did yesterday? Not the best way to start the day, but it does happen.
So, now your awake and you begin to move. After the grunts and groans and the electric-like shocks stop flowing in like the tide, you need to tell your brain to begin those ever-needed positive thoughts that say…”Get up”.
Once you determine in your mind you need to get up, you begin the process. Now you are sitting up at the edge of your bed. More pain. Places that should never feel pain, has pain. You say to yourself that is too early to feel this way. You pause and look out the window, willing the day to just float you through it. Then your feet touch the floor. (If you are like me, this is a painful morning occurrence. On go the flip-flops, Crocs or slippers.)
Now that you have your barrings, you paddle your way to the bathroom. Here is where no one actually discusses how hard it is to pee sitting down mainly because they know how hard it is going to be to get back up and “potty talk” is not discussed openly on most blogs. (This is assuming most of my readers are female. I am a sit-down female and I would not want to assume what a male with Fibro goes through at this point. Just saying.)
All Fibros, both male and female do know the deep-seeded feelings of painful joints and mornings are the WORST. We do not take toilet usage for granted! No.
Okay, so that part is over and we move on to regular morning rituals like teeth brushing, hair brushing, (and wiping out the sink that is laden with your once beautifully attached hair of only moments ago), makeup if you wear it, donning sunscreen liberally on all exposed areas, and (if your arms can handle it) you braid or pull your hair up in a ponytail or bun. Forget the curling iron…You then breathe a sigh as the pain in your shoulder joints begin to wind down their screaming. You turn to look at the reflection in the mirror and ask yourself “Why me?” (Please do not go there. I fight this, too, but to keep on keeping on, you MUST have a positive outlook. Just turn off the light and smile as you walk out.)
(If you are blessed with Lupus as well as Fibromyalgia and you have a butterfly rash across your cheeks, tell yourself you are beautiful and walk out of the bathroom. Besides, you are beautiful! This is the life that the Lord Jesus himself has allowed you to have-We must make the most out of it and beauty is found within, anyway, right?)
Did I say having a positive outlook would be easy? No, I did not.
So, how about getting dressed? God forbid the clothes we put on the first time don’t fit right or your brain suddenly kicks in and you remember that you had an appointment today so a different outfit is needed. Getting dressed once can be a challenge, but twice? Here comes more pain…
Sidebar: I began Physical Therapy by way of the pool last summer. Besides the fact that it did not help but actually added to my daily pain; the challenge wasn’t in the exercise, but the changing into and out of the swimsuit and back into the clothes each session. It was like showering 2x a day and that, my friend, is a challenge all its own. End of Sidebar.
So now we are dressed and ready to begin our day. (Is the coffee made yet???)
In my home I have several children of various ages that are being home educated by me, myself and I.
I love being a stay-at-home mom!
However, since my Fibromyalgia began in 2015, I have had to make some major adjustments!
Breakfasts and lunches have been simplified to allow for me to move a bit more slowly through the morning routine. Did I just say routine? Ha! The word routine got lost the day I was diagnosed!
Fortunately for me, my children are beginning to see that my condition does in fact affect our life and can make our days a variable.
This once routined (there’s that word again) Mother has now resorted to lists and Post-it-Notes to stay on track. It is a whole new way of life. (Who said you can’t teach an old dog new tricks???)
Does standing bother you? How about sitting? How about driving? How about walking? For me, it is all of the above. Some days I need to rest-A LOT-other days I can make it through without that nap I so desperately needed the day before.
We know cooking is a chore for the most healthy person, but with Fibro it presents a larger challenge to one’s day. If I use all my energy in the morning on the evening meal, it’s a bust day for me! Easy meals are a must! I have one word for you where cooking is concerned…
Ready?
No, that is not the word. The word is…
SIMPLIFY.
One word. Huge challenge. But it can be done.
Moment by moment, it can be done.
Now your day is over and you are exhausted. Maybe you got to rest, maybe you did not. Maybe you had to drive or maybe you stayed home. Regardless, it’s now time for bed.
You made yourself shower in the hopes the heat will help alleviate the pain. Your children are asleep and you look over at your husband, smile and sigh.
(Here is the next thing most Fibro blogs tip-toe around.)
You want to be intimate with your husband like you used to. Full of energy and abandon and joint pain-free. You can, but not until you get to “that point” when you forget the joint pain. It’s a beautiful thing to “forget” the pain, but getting there is a painful thing indeed, just moving all those joints! (If your husband is compassionate to the new physical you, like mine, then praise the Lord and ask for more energy!! haha If he is not, my heart hurts for you. Let him read this blog to get a better understanding that you are not alone and that this is a REAL condition!-and pray. Seriously, pray.)
The intimacy between you and your spouse is never to be left behind-pain or no pain.
It is what makes a marriage strong.
It is what makes a marriage whole.
It is what makes a marriage complete.
Perhaps you can’t be intimate as often as you used to. (Hey, we don’t stay 25 forever…) Or maybe you are 25. (Well, I cannot relate since I’m in my 40’s, but Fibro-pain is Fibro-pain no matter how old you are.) Just keep at the intimacy! When it is all over and the pain comes roaring back, (which it always does), you will have the wonderful memory of the connection between you and your husband to fill your mind with positive thoughts to fall asleep on.
Once sleep arrives (for some it takes longer than others), my prayer for you is that you will sleep well and wake up with renewed thoughts for a positive outlook on your day as the cycle begins again tomorrow.
And…24-48 hours later when you can hardly walk and are too stiff and sore to function, always remember that wonderful night with your husband and be thankful for the 24-48 hours earlier…
It is a vicious cycle of unrelenting pain. Yes, it is. The cycle is called life. The cycle is called living.
When the storms of a Fibromyalgia flare occur, what do you do?…
What can I say? Sadly, today has been a bad day for me. I felt the flare coming on yesterday, although I tried to ignore the symptoms. I had had two consecutive nights of being woken up with all the joint pains, but last night it was my feet that deprived me of a sweet slumber. Had I done something to cause this aggravating pain? No. It’s just par for the course when you have Fibromyalgia.
Fibromyalgia is that never-know-how-you-will-feel-day-to-day condition that will literally knock you off your feet.
Today, I’ve been knocked off.
I awoke with my usual “road kill” feeling, but the gnawing feeling deep inside my joints told me what was looming ahead of me. (Just as the dark clouds of a distant monsoon warns of the storm ahead, so does the deep-seeded pains of the joints of a Fibro sufferer to an impending flare.) My road-kill, burning, shooting, constant jointy pains zeroed in on me like a rabid bat heading for water.
I tried to keep moving…
I tried not to give in…
I even tried to reorganized our vast library collection with my daughters in the attempt to feel productive.
However, by lunch I was spent and so worn out I could barely eat my tuna on crackers. Boy, that recliner looks comfy!
Once I adjusted myself in the chair, I asked my daughter to try to help rub out my pain. (Now, sometimes this works to alleviate or ease the deeper pains and other times I feel too battered and bruised and the slightest touch sends me to the roof! Today it was a combination. My feet and joints feel painfully arthritic, but the rest of my body feels like my skin is burning and bruised.)
So, here I sit…in much pain…feeling these electric-like zaps hit hip joints, trying to be somewhat productive by writing this. I am listening to a daughter read aloud to her younger sisters.
I live in the country.. I love the country! All the privacy, beautiful landscape…we even have an apple orchard and a pond…it’s lovely.
However, if I have to grocery shop, it’s easily a twenty to thirty minute drive. If I need other things, it takes longer.
All that driving to town never bothered me before I got sick. I mean, I just planned the day to shop for whatever was needed and off I went!
And then I was diagnosed with Fibromyalgia.
Now, there is no PLANNING because I NEVER know what a day is going to be like for me physically.
There is NO anything. What I mean by that is my life has been turned upside down with pain and physical limitations.
I miss the “old” days. I miss my old self.
-here is some insider personality info-
My Italian lineage causes me to use my entire being when I talk (animated, hands waving, whole body conversations). Subsequently and due to the pain of being “me”, I have learned to “tone it down” by just not talking as much or answering with as few words as possible.
On the rare occasions that this side of me comes out, I become keenly aware of the pain as my arms begin to flail and my hands go a mile a minute.
The pain is horrific.
People equate me to my animated personality and when I speak in a mellow fashion, they immediately ask “Are you feeling okay?”
Loaded question.
Am I okay?
Well now, do I want to be the type of person who really says how I feel knowing that person will never ask again?
No, I don’t.
So instead I just smile and say, “Why yes…I’m feeling fine.”
FINE…what does that even mean?
I like to be jumpy for my kids. I have ten of them, six still at home, and the first half of them remember a completely different Momma.
The older ones still here and going to college, have seen what Fibro has done to me. They had to get used to the new me just as I have.
The younger ones think when I get all animated that “Something must be wrong with Mom.”
Taking pain meds brings out my older self so the ones who know me best know I must be “on” something to be acting like that.
-end of insider personality info-
I miss me. The old me.
I struggle daily with acceptance and denial. Sometimes I have “got this” and other times I just want to curl up and wish it away.
I would not change where I live for anything. Hearing the birds and seeing the beauty God designed brings me comfort and peace.
Yes, driving hurts me. Yes, I drive more often than I want to and even drive on BAD pain days. Mainly because my dear husband receives blood transfusions about every nine-ten days and we drive over an hour to the city for his bone cancer conditon. (We both got a health whammy within a few years while still in our 40’s…)
I will always be there for him, pain or not!!
My life around me still goes on. It still makes me smile, it still gets me through and it still brings me love. That is a gift.
So here is to today!
Rain or shine…zombified or not….road kill and left for dead…
“This is the day which the Lord hath made, we will rejoice and be glad in it!”
Today this Fibro-Momma tried her hand at making some home-school desk dividers to use this coming school year.
I do admit that being crafty is an outlet for me. I love to sew and paint, too. However, my forever achey Fibro body does not always let me, but I do try!!
Having Fibromyalgia is a drag. Anyone who suffers from this dread condition will agree. But that does not mean we cannot still (try to) be a productive part of society.
My contribution is to my family and our home-school. See, I design my own curriculum, print and bind them for each of our children. It is something I am good at and something I love to do. It helps me to keep going, even on the bad pain days. Sitting at the computer creating all this takes me a lot of T-I-M-E.
Weeks…sometimes months.
But, today was fun for me!! The pain kept coming on hard, but my drive to see these dividers come into being was the motivation I needed to continue on!!
Are you ready to see what I’ve been up to??
It all begins with several pieces of foam board from Dollar Tree.
Foam board from Dollar Tree
(I was making three of these and each divider used two and a half pieces.)
Next, I cut one in half and cut another board into 3 inch strips.
Then, I had purchased duct tape in turquoise blue (the girls picked it out!) and I taped the pieces together, leaving a 1/4 inch gap between each board piece so it would fold. I sealed all exposed sides with duct tape to make it sturdier.
The finished design once it is assembled with tape.
Next, I began adding various things, like using Velcro to attach a ruler and scissors to the sides. I used clothes pins for the girls to hang up vocabulary sheets, math drills, etc. and bought large paper clips for heavier objects like markers. I also glued a folder to the side to hold papers.
One of three I made
The entire thing folds up like a book and the two-3 inch pieces I added to the center allows for bulky items to remain inside!
Fold sides in towards the front
The finished products fold easily for storage when the day is over or company is coming!!
All three are less than 10 inches across when stored
All three of these took me a little more than two days to complete, but I am certain a person without Fibro could make them in one.
I am so happy these are done!! My daughters cannot wait for the new school year to begin!
Fibromyalgia and creativity is a win-win, even if it takes days (or weeks, or years) to complete a project. Everyone has some sort of creative genius in them. It is up to you to seek it out and then act upon it!
When I get a creative idea and make myself act on it, my adrenaline kicks in and drives me forward through the muck and mire of my pain. I may go to bed with joints that feel as though they will fall off at any given moment, but my sense of accomplishment and self-worth helps to balance it out…a little…
Happy Creativity! Let me know if you think you’ll make these!! It is always nice to know others may share in my joys of creativity, too!
**Side note to those that do not home-school…these would also make great homework stations to give your child a special place to study. It would work on any table-top surface.
I deal with a lot of different personalities and hormone levels at my house.
Why?? Well, for starters I have ten children from ages 27 down to 9 and six still live at home. Each one is uniquely made and each one goes through his or her own issues at any given time. I have often said my oldest “child” is my husband! It is true he emotionally needy like the best of them! But, he also has a bone marrow disorder that causes him to tire easily. It is a Myeloproliferative Disease (bone cancer) and he has struggled with it since 2014.
Between him and my children (living at home and those who’ve begun their own lives), I don’t have much time to myself. I am not complaining, mind you. It is the life I have! But when I do get time alone, I usually rest which often times leads to a nap!
See, I have Fibromyalgia and that causes me to be in varying levels of pain 24 hours a day.
I home-school our children, keep house, manage our family’s bluegrass band, take my husband to regularly scheduled blood transfusions an hour away, and just try to maintain some sense of calm.
When I get tense, it causes my whole body to retaliate, which causes me more pain. (The 4th of July was awful on me with all the fireworks going off! With each “Pop” and “Bang” the pain zipped through my body like lightening and the pain in my body and joints just got worse and worse!-No “after-dark” fireworks for this Momma!)
Driving makes me hurt so when I drive home from the 7+ hours after his transfusion, the next day I am scarcely able to move and the day after that is worse. (I am sure sitting upright in those uncomfy chairs available to relatives during the transfusions does not help me, but I want to be there for my husband as he deals with this awful part of his life.)
When I hurt, I can move. It just hurts to move.
When I am having a wham-banger pain day, I usually find myself on the couch, but not for lack of trying to get up and get going.
My husband had a transfusion last week and I still feel like I am recovering from that trip!
Today I am preparing for our new school year, organizing our school room, and just keeping up with life. I must relax. Let me re-phrase…I must learn how to relax!!
Today I am hurting…but I do my best to keep moving while relaxing my body in the process! (I’ll let you know if that works!!)
Up, down, up, down…such is the life of a person who suffers from Fibromyalgia. I wish I had something positive to report on how to handle one’s day. But I don’t…
Pacing yourself is vital to getting through your day if you have Fibromyalgia. I find when I am feeling anxious about what all I need to accomplish, my brain freezes up and my joints start to throb.
Staying relaxed is very important!
Recently we finished remodeling our master bathroom. For two weeks my bedroom sat in a case of disarray as newly awaited bathroom parts found their temporary home next to my side of the bed and old ones lay on top during the process.
Clutter, even for a time, causes confusion, anxiety, and stress to a person with Fibromyalgia.
So even though the process, which included ripping off 30 year old wallpaper from the previous owners, retexturizing the walls, painting a coat of primer, painting the ceiling white, and then adding the robin’s egg blue color to the walls, all took days, it felt like forever with the mess.
It was all I could do to function.
I began by supervising my two children who were assigned the job and then added the mother’s touch of finality making sure each step was done correctly before moving on to the next one. That was what happened on a Tuesday-Friday.
Then, on Friday night when my husband got off work, he and our son laid the new flooring. Saturday brought the new vanity and sink base. They also hung the lighting, and window treatments.
My job was to paint the accessories as I wanted to make my own towel rack and toilet paper holders. They turned out rather nice, if I do say so myself!
I paced myself while painting the items, getting up frequently and walking, laying down to rest in the afternoons. The usual “Get through the day routine with the least amount of pain as possible.”
Against my Fibro body was all the weather during the remodel. Storms and I don’t get along, and it stormed almost every day of this project. Plus, I don’t do repetitious movements for longer than, say, 4 repetitions! More than that and I feel it immediately! Worse, I’ll feel it that night, the next day and the next.
But now I have a beautiful bathroom!
Life goes on when you have Fibromyalgia, although we may not be able to keep up, we still need to get through the days.
Hang in there when remodeling happens. It’s just a season of time and like Fibro-flares, they pass.
Have Faith! The Bible (paraphrased) says not to worry about tomorrow because today has enough going on to monopolize our minds. This is true for everyone, but for a Fibromyalgia sufferer it’s VERY true. Worry can add stress to our minds, which overflows to our bodies, which causes immeasurable, debilitating pain that is all-consuming and can last for days.
Worry is something I am good at doing; I also know what worrying does to me physically.
As a Fibromyalgia sufferer, I have to continually watch out what my mind thinks about. I run a large household, I home-school and I manage our family’s bluegrass band. My husband also has bone cancer. I have oodles to worry about in any given day! The key is for me to take my thoughts captive and “Cast all my cares upon the Lord.”
Easier said than done, but I do try. Some days I manage just fine, others…well…
Remember…
“Today is the Tomorrow you Worried About Yesterday.”
Take life one day at a time, one moment at a time.
The pain will still be there, but we can help control the flares by minimizing the worrying!
June has been quite a month for this Fibro Momma! Music engagements, family visits, Father’s Day, my 28th Anniversary…all has kept me busy, busy. Life does not slow down for Fibromyalgia.
So, What do you do when life does not slow down for Fibromyalgia sufferers and your body desperately needs it to??
Pacing yourself is vital. I use a planner/organizer to help keep me on track. I am a borderline diabetic, so I keep track of all my meals and glucose levels daily along with weather conditions and how I am feeling day-to-day. The planner helps me to pace myself and recall what may or may not cause a flare.
But what about life happenings? Can you slow down life?…not always. Here are some examples of just a three-week span of time in my life-
We played music at a four-day Bluegrass Festival several hours away at the end of May. I admit I lived on Ibuprofen that whole time. Who wants to come to a band’s tent and not see a vibrant, smiling Mom greeting them and talking of the many CD’s our booth has to offer! (Well, I don’t know about vibrant, but I was smiling because the “edge” was off the pain a bit and I had to keep going for four days straight feeding and caring for the clan and greeting fellow Bluegrass lovers!)
After our return home, and still on Ibuprofen, I decided it was a good time to redo our basement and change things up a bit… We were on summer break and it was on my “to-do” list so “why not now???” Well, three days later and I could scarcely move, even on meds…but, golly-gee, the basement looked pretty good! I, on the other hand….did not!
Rest I needed and rest I took!-I could control “life” this time.
A few days later and still recovering from the previous week’s events, I decided it was a good time to scratch another item off my summer to-do list and embarked on canning fresh strawberry jam! An hour into it and my son calls me to ask me to come outside where he and my eleven year old daughter had been riding horses…
I found her writhing in pain and not able to move; she was repeating the same six questions over and over. I came to learn that the horse had gotten spooked and she was thrown from the horse taking quite the tumble! My life literally changed in a moment when I found myself in the back of an ambulance 2x in 6 hours with her. My adrenaline kept me going, but my body could scarcely keep up. I spent a rather uncomfortable night on a futon at a children’s hospital to be with her. Thankfully, she only broke her thumb, she also had a concussion, was battered and bruised up, but it was not a skeletal issue, just muscular and walking would be a challenge for her for a few weeks. 48 hours later and we got to come home. My life did not stop for me then.
Next, my father came for a week’s long visit two days after the accident. My body was exhausted from the emotional hospital ordeal, lack of sleep and rest, not to mention all the pre-visit preparations (cleaning, organizing, decluttering) that still awaited me when we returned.
The temps here in the mid-west were soaring that week and the humidity made the heat index well over 100 degrees. Now, the heat does not throw me into a flare (thankfully!!), but rain and storms do.
The good news it that it did not rain the whole time my father was here, but we did play an outside event on one of the hottest days that week. My husband stayed home with our daughter while she was on bed rest and so it was up to me to drive to this event. The drive was over an hour and a half (driving does wear me out!) and the walking to the event was hard on me due to a great deal of steps and inclines. My dad walks with a cane, but seeing him struggle the steps made me feel almost foolish when I, too, was struggling. (Actually, I think he got along better than me!!!) This music event was not one I could cancel and no matter how I felt, I still had to go. Life could not slow down for me that day, either.
Fast-forward to this past four days…
I get these electric sort of zaps on my scalp when a flare is about to begin. It sounds crazy, unless you have Fibro, but I have learned it is a sign for me. Next came the rain…then storms…and for three days it has done nothing but storm. I have felt run-over, battered and am completely zombified, I have had back-to-back migraines, extreme joint pain and nothing, not even Ibuprofen, seems to help. Not even to take the edge off.
Storms wreak havoc on my Fibro body!
Our anniversary fell on day two of this flare…I pushed myself that day to make a pleasant memory for us both. We ended the day with a pizza and a movie at home. (My husband understands me!)
I am now on day four of this flare and am currently writing this in a great deal of pain…more than I have had in a while and I see no end to this flare up. (I know there will be, I just can’t see it…)
My head feels like it is full of cotton, my bones feel like they are literally falling off, I hurt E-v-e-r-y-w-h-e-r-e.
The rain has not let up and guess what? My daughter had a followup appointment yesterday for the accident over an hour away. It was storming and the last thing I wanted to do was leave the house. I had to MAKE myself go. Pain and all, storms and all…Life did not stop for me yesterday.
Today, I was able to take it easy. I still make myself get up and put myself together every day…even if it takes me three times longer than it should. This mornings shower was hotter and longer just to get me going. They (the trauma team) had cut off the bottoms my daughter was wearing the day of the accident and she had asked me to sew her new ones. I scratched that off my list today, making record time and had it done in less than two hours before falling onto the recliner for a much-needed rest. I was able to control life today…
What about tomorrow…well, the PLAN is to rest up some more. Fibros know that planning is dangerous!!
This evening I went out to dinner with my hubby and 19 year old son and just as we were leaving, it began to rain. As I made my way to the car, those raindrops felt like they were burning my skin with each pelting drop. By the time I got to the vehicle I wanted to burst into tears. It was like I could feel every place the rain had landed on my skin and it hurt. I have never had that happen from rain before.
But guess what? I have Fibromyalgia and I’ve learned to never say “never”…
I have a shower head that sprays like six different types of water sprays. The one my husband prefers causes me to feel similarly to the rain I just experienced. It makes me feel like I’m being sprayed with fire when that spray is on. I can only use one of those six sprays without feeling pain.
If my husband forgets to change it before he’s done, I cringe when it’s my shower time.
Today’s experience with rain took me by surprise. (I was already stiff from the pending storm and could scarcely get up from the booth without drawing attention to myself…)
Yes, I have Fibromyalgia.
Most days you’d never know it unless you knew that about me; then you may see it.
Fibro is easy to hide from those who don’t know you. It is exhausting to live daily not knowing what each moment may bring.
Today that moment brought rain.
I once loved a good storm. Now my body knows it’s gonna storm before the radar shows it.
Well, for starters, you have to realize that one day can take on a hundred different pain issues depending on the choices you make.
For example, I usually feel run over by some form of transportation before my feet hit the floor! (How’s that for a “good morning”!!!) Once my brain kicks in, depending on what I remember, my adrenaline might lift me out of bed and out the door quicker. However, most mornings for me are slow to rise, and even painful just to sit up. I paddle around my morning routine in a snail-like sort of way.
Once I get going, many times just knowing what things need to get done keeps me motivated (dishes, laundry, etc.). If I over-do or do things I shouldn’t (like clean a bathroom or sweep a porch) I will collapse into a chair and feel the pains just ooze out of me. But, if I push myself and stop when I should have stopped earlier, I will have more pain to deal with when I finally sit down and worse, for up to several days afterward.
How about the roller-coaster day when you feel like you can do something, so you do it, and immediately your body retaliates! Down you go, perhaps fighting back tears from the pain. After you rest, you are up again, feeling like you can do something (again), only to find yourself curled up in a ball of pain wishing you had stayed down.
Maybe your hazy head of the morning suddenly sweeps you off your feet into an “out-of-left-field” full-blown Fibro migraine! (Uh-oh…down for the count! You awaken with nary a memory of anything prior to it.)
You see, a person who suffers from Fibromyalgia NEVER knows what a day will bring. Just sitting at the table too long can wreak havoc and change the course of one’s day.
The Fibro person looks at all that needs to be done or what they want to do and has to make a choice. “If I do this, then I’ll have to rest. If I do that, than it’ll wipe me out for days.” But your mind says- it needs to be done! Your mind also reminds you of the pain that will follow. It’s a vicious cycle.
Today I cleaned my laundry room. I mean, deep cleaned it. I also taught a daughter how to scrub a shower stall. Later I awoke on the couch barley remembering I laid down there in the first place and then, could not get up until someone came looking for me. (at my house someone is always looking for me! I’m a mom!!)
Today was a roller-coaster day. Pain-rest-pain-rest…currently my hips are throbbing and just getting up to pee sounds like a major task.
Alas, my motto is “It is what it is” and every time I try to do something that caused me problems before just confirms that I truly suffer from this dread condition.
You know, on the “better” pain days we might think it was a misdiagnosis…until we go shopping, cook a meal or clean. Then we are reminded that Oh, yes indeedy we have Fibromyalgia!!
One day at a time. One hour at a time. One moment at a time. Each choice can affect your tomorrow or the next day.
Happy Mother’s Day weekend!!
Two of my blessings are being able to be a wife and a momma. I am thankful and loved.
May is Fibromyalgia Awareness Month. It is also Lupus Awareness Month. Please be compassionate to those who suffer from either of these two conditions…or worse, both.
When you have deadlines to meet and you suffer from Fibromyalgia, that can make one’s week extremely difficult to get through.
I don’t know about you, but when I have a deadline it causes my adrenaline to kick in, allowing me to accomplish the task at hand, but the after effects can be debilitating.
My regular day includes home schooling my children, cooking meals and normal day to day chores. It’s my routine and one my body is used to.
However, when something gets added to that and stretches me to my max physically, it will throw me into a flare.
This past week was grueling because this past winter, my children have been working on their 5th CD. My job to see it get manufactured is creating the CD case, disc, and other behind the scenes stuff, as well as being there during the mixing process.
All of that takes countless hours of sitting or hovering over a computer screen, which wreaks havoc on my Fibro body.
Yes, I broke the process down into smaller doses over a two month time period, but the mixing is different.
When mixing I am at someone else’s studio and on their time clock and it doesn’t matter how I feel. If it is scheduled, I need to be there.
Memorial Weekend is upon us and that is my deadline.
Let me rephrase that. Before Memorial Weekend is when we need to have the CD completed and in our hot little hands. That process takes weeks. It begins before May 1. We are now well into the first week of May and I spent yesterday in the studio for the mixing. (That is behind schedule).
My adrenaline kept me going, but when it’s over, I crash hard.
Very hard.
Other people’s schedules are not conducive to a Fibro body, especially when you have to be there when they say to be.
I awoke this morning feeling the effects of my week (and month) and the 7+ hours I spent yesterday mixing the CD only added to my suffering. I can scarcely move, I feel bruised all over, stiff and jointy with that hazy head feeling I get when a migraine is lurking in the shadows.
I hate it when I wake up feeling like road kill being left for dead.
Can I rest today? Nope. Not a chance.
My husband has an important doctor’s appointment an hour+ away and I must go with him. He needs me today.
Deadlines, meetings, due dates, appointments…NOT Fibro friendly.
Life does not slow down. Sometimes we cannot slow down either. Today is one of those days.
I am happy when deadlines are behind me and I can try to rest…eventually.
Pain is a part of life. Fibro pain should not be. Fibro sufferers understand this.
Well, our remodeled bathroom is almost finished and painted a beautiful deep grey with white cabinets, and, to complete the look, we hung my grandmother’s 80 something year old mirror over the vanity! It looks sharp!! It’s a far cry from the 30 year old wallpaper, dilapidated cabinets and dated swirling pink countertop that came with the house when we bought it!
I woke up this morning feeling completely run over, but what’s new?
I tell you, the ups and downs of the Fibromyalgia body is as bad as the ups and downs of the spring weather in the Midwest. Maybe that’s coincidental? Weather does play a big part in this whole “living-with-fibro” thing.
Regardless, over this past weekend I had one of the worst Fibro flares I’ve had in a long time. Sunday night I couldn’t even move from the pain in my neck and back and could scarcely sleep at all.
By Monday night, I was able to move a bit and felt 80% better than the night before, albeit, stiff.
By Tuesday night I felt I was doing pretty well overall, at least for a person with Fibromyalgia! However, this morning I woke up and I fear it’s all starting again! Could it be that trip to the store yesterday that I had to go on to get provisions for the coming days? Why, I even had my daughter drive me thinking that would ward off a flare! I think that whether I drive or not it is definitely the getting in and out of vehicle that reeks the most havoc. I have decided that I am limited to no more than two places when I go somewhere.
Wait a minute? I only went to two places yesterday! Sigh…
How do you plan a day when your morning might be fine but then your afternoon pulls you under physically? Or if you wake up like your body has already run a race and you cannot move at all, how can you plan anything???
Fibromyalgia is the most ridiculously challenging and stupidest thing to deal with and yet, I do each and every day!
I could not sleep last night and sat up in my living room mentally moving furniture. I had this overwhelming desire to completely deep clean and revamp the room! It was pleasant to sit for a moment or two and completely vision all of this. Honestly, if it weren’t for the Fibro and knowing what would really happen to me if I actually did that, I would have!
However, when I woke up this morning, all of those thoughts had flown away and now I could care less about moving furniture. I am quite content with how my living room looks currently.
You have to watch all of that when you have Fibromyalgia. On a good day you have all of these thoughts of grandeur…you know, like cleaning this or cleaning that or rearranging rooms; cleaning out that closet that’s been needing it for months.
But deep in the back of our mind we know the pain we will be in if we attempt these things. And then when we’re in pain, it’s like we don’t care; the house could go up in flames and we’re just like la…la…la.
Well, I know I won’t be moving any furniture today, mentally or otherwise! My brain doesn’t seem to be working. It feels very cloudy and muddled. This is where I tell myself that-
“This is the day the Lord has made, we will rejoice and be glad in it!”
When a Fibromyalgia flare never seems to end, what do you do? How about when “life” seems to overtake you and the Fibro has you immobilized and you can barely move from the intense pain that has befallen your Fibro body, what about that? Does your pain seem to come and go on different parts of your body on different days making you feel like a hypochondriac?
Fibromyalgia isa very misunderstood condition that causes widespread body pain that comes and goes based on what you do (or don’t do) and can make getting through one’s day (or night) quite difficult.
I felt a flare begin six days ago. Today I am in a full-blown-no-light-at-the-end-of-the-tunnel-fibro-flare. I’m talking MAJOR pain. Last week it was my hips and knees making it difficult to get up from a sitting position, drive and just do life.
We are remodeling our guest bathroom and my assistance was needed at times to help carry out large items, which did not help. (Was my assistance really needed? Depends on who you ask. My help DID help expedite the process, just saying.) Over the weekend, my daughter had an asthma attack causing me to be up and down with her throughout the night, per her Asthma Action Plan. The next day, our family also played music an hour and a half away. I probably should have stayed home, but I love to minister to the people. They help me as much as (I hope) our music helps them. However, halfway there, I knew this flare was about to triple. True to my past experiences, my body threw a fit. This time it was my neck, shoulders (and shoulder blades) and arms, leaving my fingers feeling quite cold and tingling.
Six hours later, we got home and I took a hot shower. I heated two rice socks and with the help of a heating pad, I laid down. I still could not find release from the incredible pain that had befallen me. I could not even turn my head. By midnight I tried to get up (took me 30 minutes) and swallowed several Ibuprofen and drank a whole cup of water. That is a necessary thing to do if you take Ibuprofen. Your vital organs need the water to properly distribute the meds with the least bit of damage occurring.
It seemed like it took forever for the meds to kick in; for me to finally get into a comfortable position to sleep. But, sleep did finally arrive, or must have, because I awoke at first light and found my pain rising with the sun. (Why can’t Ibuprofen last 12 hours??) I have tried Naproxon Sodium with little effect, just saying.
My life continues and my pain does, too.
Truly this is the worst flare I have had in a while. How do I handle it?
With a lot of prayer and an understanding family. Actually, my family gets upset with me when I do things that may (most likely will) cause a flare. I fight my old nature daily. My old go-get-em, get-em-done personality. I try to simplify my life, but life never seems to be simplifiable. (Is that even a word???)
I struggle daily with Fibromyalgia pain, but I cannot let it get me down. My pain waxes and wans, burns brightly and then dims, knocks me off my feet and can (quite often) keep me there. I have had to curb my desire to deep clean, sweep the patio and scrub the floors. I have had to learn to “downward-delegate” and hope for the best!
I often feel robbed of the me I once knew and try to (find) embrace the new me.
I am a work in progress. When the fiery darts seem to fly, I must dodge them and lay low. (But dodge s-l-o-w-l-y, or It’ll begin a flare!)
The one thing about flares is they don’t last. They may last longer than others, but they eventually fade…and come back…and fade…and…come…back…
The Lord is my strength.
Gentle, gentle hugs today-and forgive me if I just stand there. My arms are not working well…
Good Friday! And yes, it is a good Friday, because the sun has finally decided to show itself! It has been a very dreary and wet early spring. I regret to say that I have not felt much like writing. I have been sad with my Navy Sailor returning back to his post after a wonderful visit! It was a deserved visit for him after 6 months under the sea! (And well deserved for this Momma who has missed him terribly!
His departure was followed by rain, rain and, um…more rain. The rain wreaked havoc on my Fibro body and it has been all I can do just to function physically. That, coupled with sorrow and it makes a double dose of pain!
Today brought The sun out and I basked in its heavenly glory, willing every ounce of its goodness to seep into my very soul to sustain me until it comes out again, for you see, rain is the forecast for the coming days after tonight.
I got to listen to the sound of a lawn mower as my dear husband got ready the one the girls ride on for fun. The squeals and delights and folk song singing from the accompanying trailer hitched to the back was music to my ears! Pun intended!!
This week we are finishing up a study on the Great Depression, which includes this evening’s “Hobo Stew” and crusty bread that my three lovelies made. The table is set with metal pie plates and cake pans, mason jars for drinking “dirty water” (heavily diluted apple juice), all turned upside down because of the “dust” flying through the air (The Dust Bowl was studied, too.) After that, we are to be entertained with a line-up of old folk songs they will be singing with the guitar, per the era, with intermittent clips of time era information. Home-schooling at its finest!!
All these things make my heart happy, even as my body screams pain at me all day long. I am blessed beyond measure!
Life is good and so is our Savior, Jesus Christ, who we are thankful came and died for us so we might go to heaven.
Happy Resurrection weekend and gentle hugs!
My Navy son knows how much I love Yankee Candles that smell like pancakes and waffles! Plus, he has not let a year go by without getting me an Easter Lily. I awoke to them both while he was here.
Gardening can be rough on anyone but if you have Fibromyalgia, even rougher! This Fibro Momma will show you how it’s done!
So I decided to take a moment and write. I am waiting for the timer to go off on a batch of blueberry and a batch of banana muffins. I also just finished making a HUGE pot of baked potato soup for dinner, too. My Navy son is home on leave and it is one of his favorite meals!
My joints are all achey from watching (okay,,,helping) my kiddos begin our garden yesterday. I only raked two times. Really. But each time my body screamed at me. I did obey…and the kiddos brought me my lounge chair and some tea.
I am trying a straw bale garden again this year. It is easy and helps me not have to bend over so far. My eleven year old wanted to plant potatoes, so she did! Those went into the ground. She is determined to hoe and weed. More power to her! I, on the other hand, know what God said when he had Adam leave the Garden of Eden, and it is TRUE.
Hence the straw bale garden…
Over the coming months, my plan is to walk you through the ups and downs of gardening with Fibro!
My two lovelies helping begin our straw bale garden
I will post as often as I can about the garden if any of you are interested in trying it.
Nothing beats veggies you grow yourself!!
And if you have Fibromyalgia, nothing beats not having to bend down.
Fibromyalgia means surprises but I never expected the surprise I got today.
Today I had a baby shower to attend at Noon and our family’s first music engagement of the year began at 4pm. I knew my body should not do both, but the shower was for a dear friend’s daughter and I could not miss the music, so the decision was to do both and understand that tomorrow I would likely pay for this choice.
I rested most if the morning (Well, okay, I rested after I vacuumed and cleaned a bathroom.) Then I drove 25 minutes to the baby shower. I got home in time to rest 8 minutes before piling into our 15 passenger van and heading to the music event.
My adrenaline was still soaring three hours later and (after eating a buffet meal, mingling with oodles if people and holding a video camera for 20 minutes while the kiddos played) I went to sit down for the duration of the event when my body decided to lock up on me. Literally from the neck down I could not move. This was the second time this has happened to me in about a month.
It’s rather concerning because I was so locked up I could not even will myself to move. (And I was sitting at a large table with over 200 people in the room, trying not to look like I was in so much pain and trying to look normal). This has never happened to me in public before, either.
Since I could not move, I tried to keep a pleasant look on my face, as I struggled internally to deal with this situation. The other musicians who played seemed to drag on as my pain increased.
At my prompting with grunts, my darling daughter came over to try to rub my hands. It hurt. Tears stung my eyes and I said, “No more.” Instead I slowly began to move my fingers and then my neck and after a while I was moving enough to clap gently when it was over. My sweet husband helped me up from the uncomfortable folding chair I was sitting in and then out into the fresh air I went being guided by my two girls.
Once home, I slowly made my way out of the vehicle, (determined to become one with a hot shower) when a car pulled in (bear in mind it was 9pm) and without a warning, my Sailor son jumped out to surprise his Momma!
And surprised I was! He had only just gotten back from his first 6 month tour last week and told me he could not return home for several months!
Needless to say, my ragged body went through the joys of emotion, complete with a newfound adrenaline surge enabling me to physically hug him as I cried from happiness to see my boy again!
We all visited for another hour when this Momma had to go to bed!
I am still in pain, still semi-locked up, but still happy!
Fibromyalgia causes surprises from pain in areas on our body for no reason and life brings you surprises for no reason, too.
Today I got both!
So here is to my United States Navy Seaman and the wonderful surprise he gave his Momma! May tomorrow be another day with (perhaps) less physical surprises! (And may I be able to get out of bed and function!!)
Yep. It’s true. I don’t need the weather app to tell me a storm is coming. I can feel it. Hours before it happens, I know. My hips, my knees, and my shoulders. You know, any part of me with ball and sockets…and everything on me that hinges and seemingly everything in-between just knows.
My head gets that hazy feeling and it’s downhill from there.
Wait. Can you go downhill if your already at the bottom?
Funny…
For those with chronic pain conditions like Fibromyalgia, it’s a twisted sort of funny. Almost sarcastically true.
Some days I feel like I plummet farther in body pain, but in reality, I think I just notice it more. Spring is a few weeks away and that means weather changes. It means rain. It means pain.
Okay, I mean more pain .
But not the normal pain of “rusty” feeling joints. No, but the deep, deep gnawing feeling that makes you feel like the tendons are being ripped off your bones and your joints are just dangling there. The feeling that you don’t want to move at all. The feeling that it’ll never end.
The good news is it will.
Well, no it won’t, but it won’t stay excruciatingly painful. It will become tolerable, but the question is when. How long will that take?
That’s another good question that is highly personal and decidedly not answerable.
Again, if you deal with chronic pain you can understand all that I’ve written.
I have Fibromyalgia- The absolutely most ridiculous condition never to be understood except by those who suffer from it.
The rain is coming, my body is aching. I feel bruised with no physical signs of bruises, I cannot sleep well, I awaken each time I roll over from my hips screaming at me.
Yes, this has not been a good day for me physically and I see no light for a couple of days, but it is my new normal.
My outlook is everything.
If I were to dwell on my pain, it would drive me and everyone around me mad.
My perspective is everything.
It must be a positive one…and I do my best to keep it that way.
No matter your pain, keep your head up and smile. Smiling does make a difference. Not just to those around you, but also to yourself.
Make smiling a habit. Find your sense if humor in the pain. It’s harder done than said.
I’m a Fibromyalgia Warrior and it’s the last week in February and the good Lord has given me a day of sunshine! So, after school lessons were done, we headed outside to enjoy the day! However, this Momma decided to attack the neglected patio due to dreary winter weather instead of sitting quietly in the sunshine. Was this a wise choice?
No, it wasn’t.
Now, I did enjoy getting out the broom and going at it. It actually felt good to do! I thought “Hmmm, maybe I am not as bad as I think…the stretching from sweeping actually feels good…maybe I will be able to work outside this spring with no pain or repercussions….”
This I thought as I swept…dreamily thinking of a beautifully manicured yard as my mind trailed off….and my body did not follow.
Yep, that’s right. My body locked up.
Not right away, of course.
No, it tricked me into thinking I might actually be able to enjoy working outside again.
And then the pain hit me at about the same time my Navy son called me. (He just got back from deployment last week!)
“Hey, Mom, what are you doing?”
Well, that was not a question I wanted to answer…I knew he would not be happy with me. He may live over a day’s drive away and may have just come home from a six month deployment, but I knew he would not want to know what I had really been doing.
Of course I told him…
…Of course he told me…
…to STOP…
“Make a list,” he said, “Of everything you need done and when I get leave to come home, I will do it.”
Well, now, that sounded like my son had grown into a man while he’d been gone.
Tears stung my eyes from being proud of my son and how much he cares for his Momma.
I admit, I knew I should not have even picked up the broom. This is my battle continually. My old self and the new one. Fibromyalgia steals away your old self and replaces it with, well, pain. Pain everywhere, all-the-time.
I promised my son I’d behave and pace myself. I promised I would sit and enjoy the sunshine. After all, my sweet girls wanted me to sit with them and do that anyway. I should have listened….
But there is always so much that needs to be done…..
And there always will be.
Today’s lesson?? Don’t overdo it. Pace yourself and keep the pains at bay. There are plenty of pains just moving through the day naturally anyway, right?
I am thankful for my children who love me and don’t like to see me suffer. (Or find out about it via the telephone…)
Happy Monday and gentle hugs!
I hope the sun is shining in your neck of the woods…and that you are sitting and enjoying it.
I know I will be.
Our Navy son before he left for deployment in 2017.
Today was a tough one. After all the cooking that was done by me the past few days, what with Valentine’s Day and a son’s birthday (which yielded 14 people) this Fibro body was struggling.
Add a previously scheduled photo shoot this afternoon for our family’s 5th Bluegrass music CD cover (taken by your friendly neighborhood photographer…moi’) on rather a blustery winter day, and you have the makings of Fibro-body-disaster!
The pictures came out great, by the way! The models (six kiddos from age 9-22) all worked together! (yippee!! and not much stress…)
However, when I came inside, my body locked up immediately and I literally could not move from the kitchen chair I had sat down on. I felt like I was covered in plaster-of-paris or buried in wet sand from the neck down for over 15 minutes. Was it from the past day’s activities, holding the camera up for an hour and a half, or the chilly temps? Maybe it was the fact that my son had to help me up from a squatting position almost every time while photographing instruments? Perhaps all of the above?
Regardless of the whys, there I sat.
I eventually began to slowly move my neck and hands. My daughter helped move my legs and after another minute or so, I sat rubbing my hips and knees all the while hoping my hands would hold out from my rubbing.
It was the worst I’ve ever been as it was my entire body all at once. Normally it is this and that pain today and some other pain tomorrow.
Every Fibro sufferer knows that they never know when or where the pain will strike.
It’s true.
Pains come and go with nary a warning. Such is the life of a Fibromyalgia sufferer.
The good news is I’m back to feeling my normal Fibro-self. That flare lasted about an hour, but it was a doozy!
Definition of “Normal Fibro-self”= relatively high pain throughout various areas in the body, difficulty sitting and standing and extremely hard to climb stairs, burning pain the joints and must-have Crocs for the tootsies. You know, NORMAL.
I am still stiff and sore and my hips burn something fierce! But I am thankful we got the pictures done! Now I can focus on something else. Like a new week. Tomorrow is Monday and a great way to begin anew!
Mondays offer a chance for a new start. A chance for the slate to be wiped clean and to make new goals for the week. Perhaps this week I will achieve some of my goals! So, make a list, check it twice, and do something on it. When you see that list grow smaller it will make you feel like you’ve done something! And you have! Good luck!
Why is weather a factor for Fibromyalgia sufferers? I mean, just when you think the pacing you have been doing daily, (giving yourself adequate rest and not over doing it), and trying your best to get through the week, it drops out of the sky and rains. Literally.
Well, such has been my prior two days. With Valentine’s Day having come and gone and my son’s birthday to prepare for three days later, my body was already in need of some TLC. Yes, I go overboard each holiday and Valentine’s Day is no exception. I set the bar rather high when I did not battle this beast called Fibromyalgia.
Heart-shaped pancakes, heart-shaped cake, heart-shaped pizza…it is the tradition and memories I leave my children. However, with Fibro, it is now tougher to accomplish these things…but I do…and I want to.
Enter the weather. No amount of pacing can prepare a Fibro body for weather change.
Two nights ago my hips just screamed at me. They literally felt like they were coming off; the pain was excruitating and maddening. And then I heard it. The pelting sound of rain on the roof. I checked the radar and there it was…rain for hours…and dropping the temps way down. Since then I have not caught a break.
I awoke early this morning from the pain in my joints. The radar shows snow followed by rain is to be the forecast today.
And guess what? Today I have a house-full coming to celebrate with us. My son is 19 today. He is in college studying business finance and works at a bank. He is a great young man. I want his day to be a happy one.
~sidebar~
My home is centered around the kitchen. Everything is based on the evening meal. (Yes, we are a family who gathers together each evening and breaks bread together. It stems from my upbringing. I was blessed with a family of good cooks who put family first and family meals top-priority.)
That said, today will predominantly be spent in the kitchen. My son’s favorite breakfast, lunch and dinner will be prepared in his honor. It’s what we do. It’s what I love to do.
~end of sidebar~
However, my body does not usually cooperate…ever. And on this snowy-turned rainy Saturday, I will catch no break from the pain. My “scarecrow body” will need to be gathered together and forced to walk. Later it will change to my “tin-man body” and I will need my “oil can” just to keep going…if only I had and oil can. Ha!
I am sure in my case my week caught up to me and the weather just made it worse. Whatever the cause, I hurt more today. One good thing about Fibromyalgia is that you don’t look like you hurt. But inside you are groaning!
So here is to the waffles and homemade mac and cheese. Here is to the spicy wings and other yumminess to bless our palettes today. Here is to my family, who not only is coming over to celebrate, but will undoubtedly be helping me in the endeavor of cooking all these scrumptious things!
I am blessed…pain and all.
And lastly, here is to my son! May his birthday be filled with pleasantness and love!
I have Fibromyalgia knees. What is that, you may ask? That, my friend is the price one pays for having a grand condition such as Fibromyalgia!
Fibro knees are sore.
Fibro knees feel like they are swollen-but there is no sign of swelling.
Fibro knees hurt to sit down and then stand back up.
Fibro knees can scarcely climb any amount of stairs.
Fibro knees cannot sit Indian style AT ALL.
Fibro knees hurt to stand, walk and (if you try it) hurt to ride a bicycle.
Yes, I have Fibro knees. My doctor recently ordered some X-rays on my knees, hips and feet-just to make sure there is nothing else to be concerned about. (Nothing else?????)
How do I get through a day?
Well, I start very slow…I sit up on the side of my bed for several minutes upon awakening. I slip my feet into my Crocs and slowly walk to the bathroom. The pain in my knees and feet are overwhelming! (It is way too early to feel overwhelmed!) Sitting to use the toilet is so fun and standing is even better. (note the sarcasm-and grim facial expression!)
Once up and dressed, it now takes me 30-45 minutes to maneuver my way to the kitchen. Our school room is in our basement and I have found it best to walk outside (no matter what the weather-seriously…snow is easier than stairs these days) and go in through the basement door than walk down the stairs. If I use the stairs, my Fibro knees will throb and I will be rendered pretty useless. (Sigh)
Let’s just say I avoid the stairs when at all possible.
AH! Fibro knees!
Rest is crucial! I have tried ice and heat to no avail. NSAIDS don’t do the trick, either.
I sometimes teach with a leg propped up or in a recliner with two legs propped up! But I do teach! I love my kiddos and I love to teach them!
If you have Fibro knees, see your doctor. It may be that something else is brewing. I shall await my results and pray it is nothing more.
After all, isn’t Fibromyalgia enough to deal with?????
Exercise is vital to everyone’s health, but when you have Fibromyalgia, exercise seems like a daunting task. The daily pains from Fibro make even the simplest of chores seem overwhelming. How does one make an exercise regimen when just getting up and going is a task all its own?
This seems to be a real question and concern for many Fibro sufferers. When I was first diagnosed three years ago my husband bought me an Schwinn Airdyne stationary bike. I began to implement the daily use of this fine piece of equipment, but I struggled.
I struggled because it hurt.
I mean, really hurt.
Not muscle hurt.
But bone hurt and joint hurt.
And not just as I was using it, but after when I could barely get off of it…
…And two days later when I could scarcely move.
If I used it daily, then you realize that means I could barely move every-day.
I’d like to tell you it’s gotten better.
It hasn’t.
I walk when weather allows and I walk more than I ride the bike because I’m not giving up. Joint and bone pain seems to be my daily companions but I still need to keep my heart healthy.
So if my body says I can walk, I walk. If it thinks I can bicycle, I ride. And if I cannot do either that is okay, right?
Of course, right!
I refuse to give up! Fibromyalgia gives me pain on top of pain every day, but it cannot rob me of me.
This month marks the 3-year anniversary of my diagnosis with Fibromyalgia. I wish I could say that the past 3 years I have stayed the way I was at my diagnosis. However, my experience has led me to conclude that Fibromyalgia is a progressive condition.
When I was first diagnosed, my pain levels were at a relatively high scale that ran in waves throughout the month. I had days where I sometimes even forgot that I’d been diagnosed. However, within a few months it became more frequent and within a year it was every day.
Now, here I am 3 years later, and it is a moment-by-moment, throughout-my-day-type-of-pain that I cannot escape. The diagnosis is ever before me and everything I do is a task in itself.
How do I survive? By thinking positively and making daily short-term goals that are attainable. Even if it’s just getting up and moving. By making simple goals (and listing them out on paper) it helps me feel like I’ve accomplished something.
Before Fibromyalgia, I thrived on accomplishing tasks throughout the day. I guess you could say I was a lister. I liked making lists of things that needed to be done. It made me feel good when those items were crossed off the list, knowing that I had done them. I felt self-gratification in knowing that the jobs were done. At the end of each day, I could look back and feel proud of my accomplishments and feel that a restful evening was well-earned. I was never the type to procrastinate and put things off until another day.
Enter Fibromyalgia.
Now, I fight my old self continually. I fight the guilt of feeling like I should be doing more in a day. I constantly have to give it to God and ask Him to guide my steps.
Psalm 61:2-3 says “From the end of the earth will I cry unto thee, when my heart is overwhelmed lead me to the rock that is higher than I. For thou hast been a shelter for me, and a strong tower from the enemy.” (In that verse, I equate “enemy” with Fibro)
I DO know the Lord and I lean on Him daily.
In my experience, I feel that Fibromyalgia is a progressive condition. It has slowed me down in ways I never thought possible. Actually, things I didn’t even realize I took for granted like walking, getting up from a chair, washing my hair in the shower, etc. are all things that need to be done, but cause me pain, and I do not take them for granted any longer.
My soul yearns for spring and the warm sunshine so I can walk my one acre apple orchard again. As hard as it is for me to walk like that, I know it is something that I must endure. I cannot become completely sedentary. Walking is still a gift and I look forward to the warmer weather again.
On these cold, blustery, overcast and bleak winter days I do admit my soul can get just as cloudy as the weather on my life. It is during these bleak months that I find that I lean on God even more for a lighter spirit within me.
I have learned to be a “glass half full” sort of gal. Learning to “keep on the sunny-side of life.”
Gloomy days match gloomy moods, so I need to be happy, I need to choose the brighter side of my situation…and so do you!
Fibromyalgia and driving don’t go hand-in-hand, at least for me. My experiences have always been less than agreeable. Even going shopping or to the city for a doctor’s appointment, wreak havoc on my body.
Yesterday, I had to drive over an hour to take one if my sons to a doctor’s appointment in the city. I scheduled my day around it and planned to stop at a few local stores. In the past this has always been a bad decision and yesterday was no exception.
I am limited to getting in and out of my vehicle to no more than 3 times per outing. By the time we left the city and then stopped at the last store closer to home, I had to lift my right leg into the passenger side and asked my son to drive the rest of the way home as my knee and hip had locked up and were throbbing.
When I awoke this morning, my body let me know that it was not happy (is it ever, anymore?). But what is worse is the hazy feeling in my head which is usually indicative of a pending migraine.
These are regular occurrences in my Fibro life. I just have to plan a down day after a travel day.
But what if the “schedule” won’t allow for a down day?
Sometimes that happens and today is one if them.
My husband has a work dinner party that we must attend this afternoon. Looks like I’ll be resting until then. My body won’t let me do otherwise, even if I tried.
I guess the ironing and mending will have to wait for another day…which my hands could not do, anyway.
That 24-48 hour Fibro delay thing always holds true and by tomorrow I will be worse off than I am today. And driving is especially hard with sitting upright and it is also hard on my hands with holding the steering wheel. *sigh*
When I am hurting and in need of rest, oddly, I’ll get a vision of me outside, running very fast. In that vision, I have a desire to run non-stop; to run with all my might as if someone or something is chasing me…Maybe even over-exert my physical form like I am trying to prove something to myself-As if running non-stop, fast and hard I could somehow out-run the pain…
Or maybe run so fast that I leave the pain behind me.
Yes… like running super fast I would somehow break free from the bondage that Fibromyalgia has me in.
The mental vision of me running may be a metaphor of me trying to outrun the pain before it catches me.
I feel this way more often in the winter, probably because I am mostly house bound due to in-climate weather.
Sometimes I want to move really fast like I used to. Sometimes I want to jump rope when I see my girls doing it (and I have…and I can’t). Sometimes I want to ride my Air-dyne bike with all my might and take all my frustrations out on the exercise itself; to try to release all my anxieties and stresses of this dread condition with vigorous exercise. Unfortunately, I am lucky to go two minutes a day without serious joint flares.
Would strenuous exercise make the Fibromyalgia just disappear?
Would it?
Would it be worth trying?
Ah, but I have tried many of these things…many times…and the outcome is always less than favorable, causing excruciating pain as I did it, or soon after, with agonizing and debilitating physical issues for days and days. Sometimes just walking is painful enough.
Trying to prove to myself what I can no longer do is like pouring salt in an open wound.
I walk as often as I can when the weather is pleasant, but those walks cause me pain, not just as I walk, but many times, pain for days.
But I must walk for my overall health.
Yes, I wish I could somehow out-run the pain.
Golly, I just wish I could out-walk the pain. How about out-stand the pain. Now that, my friend, is a pun.
As for my vision, I guess it is more of a yearning to be free from this awful condition.
This is where positive thinking is vital.
So here’s to positive thinking when you feel anything but positive! Knowing I am not alone in this daily fight of chronic pain can be helpful. If you are reading this, you must battle the same thing…
I may not be able to walk well, let alone run, but I am a saved child of God and “I can do all things through Christ who strengtheneth me.”
When you have Fibromyalgia, you have to divide up your chores into segments. That means NOT doing things all in one day. For me, this is a hard rule to follow. Especially when my old, pre-fibro self used to “do-it-all” in one day!
Take summer gardening. Once upon a time used to pick, wash, cook and squeeze our fresh blackberries to get all that yummy berry juice! I would then make blackberry jelly the same day. When summer tomatoes were ripe, they, too, were picked, boiled, skinned, puree’d and canned either as tomatoes or as pizza sauce…the same day.
Now that I have Fibromyalgia, these things need to be accomplished in stages.
Some of you may even be thinking…”or not done at all…”
Okay, but there are some things I enjoy doing and canning is one of them. There is just something about growing your own food and preserving them for your family to enjoy. I have had to give up and alter many things in my life since this dreaded condition befell my body.
So, since I cannot “do-it-all” in one day anymore, I have learned to freeze my tomatoes and berry juice in the summer and can in the winter! When winter hits, the defrosted bags of tomatoes are puree’d with my stick blender for pizza sauce making. The berry juice is boiled down for jelly.
So, on this cold and blustery January day, it seemed like a good time to make blackberry jelly and pizza sauce from the blackberries and tomatoes that were picked last summer.
I have learned to can my jams and jellies and even pizza sauce in the winter.
It makes more sense, really.
Canning makes a kitchen hot! Why can in the summer when the air-conditioner is running when you can can in the winter when you want your home nice and warm!
Today I canned 18 jars of blackberry jelly and 14 quarts of pizza sauce.
I divided the tasks between yesterday and today to help me survive the pain.
I got all the bags of frozen tomatoes and the berry juice out of the freezer last night to defrost overnight in each respective pot. I washed the canning jars and placed them into the canner and had my sons put the heavy canning pots onto the stove for me.
In the morning, I turned the pots on high and let them boil to sanitize for canning. In the meantime, I prepared and puree’d the tomatoes with my stick blender and added the seasonings. I rested for 20 minutes.
Then I prepared and made the jelly in batches (three total).( Good thing I had help with the stirring!!) Those jars were placed in the canner and I rested another 10 minutes.
Next I cooked the sauce and had a daughter help stir the pot! Then into the hot jars the sauce went! Once those were in the canner, I rested yet again, for the forty minutes they needed to process.
It was a productive morning.
By evening, my body decided that it was done and ready for bed much earlier than usual. I am sure the stirring and mechanical movements of the canning process is the cause. I may pay for it tomorrow…but it will be worth it to put some yummy blackberry jelly on toast!
I am in the middle of a Fibromyalgia flare. Usually I have an idea of what caused it, but this time nothing I did comes to mind. Usually the flare only lasts a few days. So far I am on day four.
I can try to psycho-analyze it; maybe narrow the options and get a clue.
Maybe it is from sitting at my desk teaching last week. Coming off the holidays where my schedule was anything but structured, I am sure sitting for hours at a time trying to recreate structure wreaked havoc on my body.
Perhaps it is from the weather which has the temps barely reaching 20 degrees by day. It is winter, after all.
Maybe it is the stairs in my house that make it practically impossible for me to use, but must use, daily.
Maybe it is just living life, one day at a time, and this flare isn’t actually a flare, but the new normal I am supposed to become accustomed to.
The Flu just went through my house. I escaped the event, but having Fibro, I feel like I always have the flu anyway-minus the high fever. At least when you have the Flu, the symptoms eventually go away and you sleep…sleep…sleep.
NOT so with Fibromyalgia.
So, whether flare or life, I am suffering. I will never get used to not being able to sit comfortably or get up from a chair easily, sleep well or at all, or walk without my joints screaming at me.
But, life must go on. And go on, it does!
My family is a blessing to me and without them it would be much harder to handle the challenges Fibro throws at me.
I am a Fibromyalgia Warrior. I CAN fight this battle. (I do everyday)
So for all you Fibro sufferers out there, you CAN do it. One moment at a time. One day at a time.
Homeschooling with Fibromyalgia can be a challenge. It’s now January of 2018 and I am trying to get back into the swing of the school schedule.
That means I have been preparing schedules for me to follow; schedules for me to adhere to when I’m having a (new normal) pain day, an “I feel like I have arthritis everywhere” day or a complete “I cannot even move today” day.
These schedules are good things to prepare when my brain is working, but if I stop before I complete a thought and then go back to finish it, I usually forget what my brain was thinking earlier. That means I need to push myself to get the thoughts out before I stop and that causes problems of its own. Oh, and if the kiddos interrupt me, it’s all over. My brain shuts off.
So when do I prepare these schedules, you may ask?
Good question. It can take me days to finish one because I’m trying to chase the rabbits of my thoughts from another day. It’s frustrating!
Schedules for me are an important part of our homeschool. Children need structure, routine, and schedules.
My Fibro brain needs them also to get through my days when my brain is mud. On those days I can refer to the schedule and (appear to) go on as normal.
(NORMAL??? What is normal?)
Sitting in a chair typing schedules on a PC is cumbersome and painful. Tonight I could scarcely get up from a seated position due to the computer work of the afternoon. But these schedules are vital to my success in what I have been doing for over 20 years.
I love to homeschool! It is my life. I have 9 glorious years left, too!
These schedules I create are more like guidelines than actual rules, but it helps keep my brain in check while going through my days.
(Provided my brain will stay with it long enough to get them completed.)
3 schedules down-3 to go.
After the holidays, I am looking forward to routine again.
I pray your brain works well for you this new year. I pray your pain will stay at bay while you endeavor to pace yourself and make schedules for your life, no matter what your days may entail.
Happy New Year from a schedulized, Homeschooling, Fibro-Momma. (Or at least trying to be…)
When you have Fibromyalgia life does not stop, not even when family gets sick. The chores still need to get done. The dinner still needs to get made. The laundry still needs to be washed.
If you suffer from this dread condition and are raising a family, I can relate to you. I have a lot of people who depend on me each day.
Currently, I have a sickness rattling my home that the appears to be the Flu. It has (so far) affected my two youngest. This means, of course, that this Fibro-Momma has to work double time! When the kiddos throw up, Momma has to take care of them, then wash the bedding, clothes, etc. Fever reducers must be administered around the clock. That means no sleep for the weary! It means pulling yourself up when your joints want to stay in the warm bed. That means pushing yourself for the sake of others. There is no room for selfishness when you have a sick one (or household)!
Back in the day I was always the Mom who never slept when the kiddos were sick. I rocked them, sang to them, made them home-made chicken-noodle soup, Jell-O, etc.
Home-made Chicken-noodle soup I made today
Now that I have Fibromyalgia, I still want to do these things, but it is at a cost. Home-made chicken soup is easy enough to make. It just takes time and effort. Well, I did make it and it was delicious! The perfect food for a cold winter’s day and very sick little ones! My hands are a mess from cutting the veggies and de-boning the chicken, but it was worth it!
I told my husband the other day that if I came down with the Flu, I doubt I would know it because most days I feel so achy and my joints scream at me that I feel like I’ve got the Flu! He compassionately said I would get a fever and then I’d know. Well, I guess so.
In the mean time, I have been running our house with only one older child to help as the others have all left for New Year’s celebrations. It is the coldest winter we have had in years and we have been hauling more firewood, breaking ice in water troughs every few hours and trying to keep warm!
My body aches and is stiff (cold weather does not help this) and so far only my youngest two are down. It makes for quieter days, but not much rest for me.
So what do you do? Find restful things to do with your sick child or children. Listen to CD Book tapes, watch a movie together, read to them. Momma’s body needs rest, too, and we need to get it whenever we can! Nap when they nap and drink plenty of water!
So from my home to yours-Stay warm, stay healthy and stay rested!
