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.
Living Daily with Chronic Invisible Illness

Fibro-Fog and Remembering what you Forgot

fibropage1

Fibro-fog is a real battle. It is not necessarily a daily fight for me, but when it does occur, it is quite hard to handle.

As I write this, I am suffering from Fibro-fog. The words just evaporate from my mind faster than I can think them. I feel like I am chasing word rabbits through the muddy fields of my mind. I literally can see the words hop away and I cannot remember what they were.

Trying to have a conversation on days like this can be amusing to the listener as I stutter out my thoughts, but it is a real struggle to my inward self. It makes me realize how bad this battle truly is for me and unfortunately how so out of my control it is for me as well. I find myself becoming more reclused and separated on these days, which I know is not good.

Oh, and forget grocery shopping, returning calls or paying bills on these days. I have tried doing these things when I am having a foggy day and then I don’t remember that I did them.

Or worse-when I thought I did them, only to find out I never did.

In the past three months, I have “forgotten” to pay some bills that I swear I did pay. When I realize that I did not pay them-days later-I get very shaken up because the reality of my situation hits me like a ton of bricks. Then I must face the truth about my health that I often times like to pretend is not really happening.

I have had people phone me on Fibro-fog days and I purposely will not answer the call because I know I won’t remember talking to them. Of course, I won’t remember to call them back, either. It’s a vicious cycle.

This is where Post-it-Notes come into play. My kids gave me a bunch of them at Christmas. I do my best to use them (if I can remember where I put them when I am remembering what I need to write down!). My cabinets are dotted with squares of colored papers. Who to call back, what is needed at the store., etc. I also date them. Days can go by in a sea of endless blur and it will surprise you how these dates multiply quickly.

On days when I am thinking more clearly I will make a list of things I need to do, bills that are due, groceries that need to be bought, etc. I have also found that writing down what I did do helps me to remember what was done. Sounds crazy, but it is my life. There are times when I really don’t remember that I did something and by writing down what I did and the date that I did it, helps me immensely.

In our home-school, I have a list of school oriented things we do on my painful foggy days when the regular routine just won’t work with my brain. Educational videos, worksheet reinforcements and student busy work all help me when my brain cannot follow one train of thought and those rabbits start hopping!

For Fibros, once again, it is all about restructuring this new way of living and trying to create a new version of our old self. We are the ones who have a hard time handling the life change and I am no exception! I battle change regularly as well.

The daily pain struggles of Fibromyalgia are hard enough, but when it is so bad that Fibro-fog kicks in, it makes for rougher sailing through one’s day. When you’re having a painful flare day and Fibro-fog day at the same time, it is almost impossible to survive.

But all of us Fibro-warriors know that flares come and go and so do the foggy days. After all…

Tomorrow is Another Day!

 

Living Daily with Chronic Invisible Illness

Fibromyalgia and Perseverance

fibropage1

Do you have Fibromyalgia, Lupus, Chronic Fatigue Syndrome or another chronic invisible illness? Perhaps you have an over-lap condition to Lupus like, Sjogren’s Syndrome, Mixed Connective Tissue Disease, Raynaud’s Phenomenon, Rheumatoid Arthritis, or Scleroderma?

If you have been diagnosed with any of these conditions, please know you are not alone.

When I was first diagnosed with Fibromyalgia I had a difficult time with all the information I read. Trying to process it all was overwhelming at first, to say the least. Truth is, I still struggle with it. I am currently in the midst of a Fibro flare. Day five, actually. I wake up wondering if it will be over today. Each day makes me feel lethargic and even more incredibly sore than usual. I am so tired and worn out! My joints *h*U*r*T* with every movement. My head continues to throb in the front and the back. Ibuprofen barely takes the edge off of any of it. It is a major drag, to say the least.

However, I still have to live life daily, flare or not. I only go through my day much… S-L-O-W-E-R. I still need to cook. I still need to do laundry. I still need to (remember) to pay bills. I still need to take care of my family. I still….still…still….

Now, I do read about Fibromyalgia and Lupus as often as I can. Especially when I have a new symptom. It helps me to know that others are going through this, yet, at the same time, makes me sad at the thought. I blame almost every pain I have on the Fibro because it probably is the Fibro causing the pain.

The hardest thing you will find to digest is the acceptance that you actually have what the doctors have said, what the blood tests show and what you are reading about. When you read about the condition and all the symptoms of the condition and you can relate to them-that’s rough.

I still have days where I feel alone in this new battle I find myself in. Some days I want to withdraw from others and recluse myself. Sometimes, I even feel sorry for myself. What???? Hey, I am only human. Unless a person actually suffers from this awful disease they have NO idea how the person with the disease feels. They can read about it, but unless THEY are experiencing it, they have NO understanding of what it means to feel this way. Just saying.

Yes, I have Fibromyalgia. Yes, I suffer daily. Yes, I implement the power of positive thinking daily. Yes, it does not always work! Yes, I am a fighter! Yes, I can DO this! And yes, so can YOU!

Let us persevere in this new race of chronic pain!

We are the champions, my friend!

Fibromyalgia Migraines, Fibromyalgia Pain, Living Daily with Fibromyalgia

24-48 Hour Fibromyalgia Delayed Reaction

fibropage1

Today I suffered the typical what I call “The 24-48 Hour Fibromyalgia Delayed Reaction.” That delay is when our body reacts to what we did 24-48 hours before-hand. It’s a part of Fibro that is frustrating. Most Fibros will get used to this happening to their bodies and learn to live through it.

What does one react to? Well, it took me over a year to figure this out by keeping a journal of foods I ate, things I did, how the weather was everyday, stresses I encountered, chores I did, etc. Journaling helped me to understand how my body reacted as I became more “in-tune” to myself and my body.  It was quite the process, but worth it in the end. Sometimes we remember right away that we raked the yard two days earlier and the “flare” is the delayed response to that. But sometimes it is not that simple.

This flare I find myself in today, I fear, is self-inflicted from my Saturday of pruning when my back was hunched over pruning seedlings that did not belong in my flower beds. (see the post from August 5, 2017)

Yesterday was a very rainy Sunday (and we know how much rain and Fibro goes together *note of sarcasm*) and my family and I went to church to play music for a Homecoming Celebration. (My husband and children play in our family’s Bluegrass Band most weekends and we usually drive within a radius of 200 miles for each event. I’ve done the “Mom” thing over the years. ie; get them to lessons when needed, make sure their clothing colors are coordinated and clean-and still fit-haha, take the calls for bookings, keep our website’s schedule updated, pack food for the journey, make CD covers, take pictures, etc.)

Anyway, by the time we got halfway home, I had a migraine befall me out of nowhere-joint encompassing and all! I felt nauseous and knew there was no going back! I downed ibuprofen with a bunch of water and asked my son to rub my neck and shoulders as my husband continued to drive us safely home. Once there, I collapsed on our bed, covered up my face, and lay there trying to ride it out. Next came a very hot shower as my body began to respond to the meds.

This morning my lower back and hips decided to lock up on me less than twenty minutes into my morning. It was so intense that it brought me to my knees. Literally. I needed to enlist the assistance of two children just to help me up. I have tried moving from chair to bed and back again, doing school lessons with a heating pad in less than comfortable surroundings. Even ibuprofen has not eased the pain today or enabled me to move much at all.  I also feel very lethargic and groggy.

I tell you this to help you understand that this flare began last night with the migraine and continues on into today. How long will it continue? Well, that is the fun thing about Fibromyalgia! (note the positive tone in that last sentence???) You never know how long a flare will last, but what you do know is it won’t last forever!

So, was it the rainy weather? The Saturday chores? The long Sunday drive to play music? Or all of the above? Could this be a Lupus flare and not just a Fibro one? I do run a low-grade temp with this type of whole-body flare-ups. But, regardless, it’s here and I have to live through it. For all you Fibros out there-newly diagnosed or seasoned-it is your outlook that matters. I lean more on God on these rough days and try to have a positive attitude.

Just know, you can get through the flares and you are not alone!!

Living Daily with Chronic Invisible Illness

Another Day with Fibromyalgia

fibropage1

Today was another “normal” day with Fibromyalgia. What does that mean, “normal”? It means we live through the day doing what needs to be done, resting when we need to rest and muddling through the stormy sea of unending pain that seems to always be our constant companion.

Yes, today was another day with Fibromyalgia. It also was Saturday. I awoke in the usual way with stiff joints and painful feet, but when that groggy feeling over swept me after only an hour of being awake, I knew immediately that it meant I would be fighting of enemy of fatigue today.

Due to this, I set out to keep myself busy so I could try to have some productivity in my day before my body completely gave out on me. What did I do? Well, I decided to clean the windows in my kitchen, which lead to hosing off the screens, which lead to scrubbing the storm door with Clorox Gel Bleach spray and a scrub brush. (We have the type of storm door with a rough texture which causes all the dirt and grime to just cling to it. The gel cleaner works amazingly well with not much effort to achieve a bright white door!)

Needless to say, I had to pause continuously to keep the pain from over-taking me. For those of you who are following this blog, you know I like to clean. It just makes me feel good on the inside and the satisfaction of a job well done is quite therapeutic, at least for me. Also, having things neat and orderly actually helps with Fibro-fog! However, the down side is the way deep cleaning makes me feel physically. It is a terrible clash of the chemical makeup I have and my newfound health problems! Nonetheless, I pressed forward until I could go no further. Then I rested and began again.

Everyone who was at home today had their own chores to be done. My husband and two oldest sons were building onto our storage shed and were consumed with this project or I may have enlisted their help in the window washing mood I found myself in. Our oldest daughter was working on her AKC Dachshund business she runs on our property, posting new puppy pictures to her website. Another daughter was ironing her father’s work shirts for the week and the two youngest were playing with their dolls in a playhouse designed of sheets and a picnic table. I am blessed with a large family and wonderful husband! There are no words to describe how great they all are!

When I finally took a rest from the joint pain from the up and down window washing motion, my dachshund daughter had finished her updates and had made everyone lunch!!

(**smiles all around!!**)

The pain and fatigue were overwhelming on my body as I ate and I finally gave in to a nap. An hour later I had to pull myself up. I was still…so…tired…so…sore…so…groggy…so…hurting…and needing to keep moving because I did not want to sleep my day away.

I slowly walked through the kitchen and grabbed my pruning shears, asked my pie-baking daughter to come help me and headed to the overgrown flower bed where I proceeded to cut back all those Red Bud trees that seem to appear overnight where they don’t belong.

My hands and a pair of shears are not a good combination, but nevertheless, I began as my daughter raked them all into a pile and hauled them to a deep section of our wooded property.

Then, it began to rain. It was a light rain, but I could feel it deep in my joints. The pain consumed me but I was determined to finish before it came down harder. The pain won. My determination ended in one large swoop. I s-l-o-w-l-y walked back to the house and porch and lowered myself into my anti-gravity lounge chair I found at Sam’s Club two summers ago. The pain seemed to engulf my very being. My brain cried out that I did this to myself and I consciously know this. I do not like feeling like this, but honestly, life still needs to happen and things still need to be done and I would feel pain even sitting in a chair. I cannot complain because I chose to do these things today. I am working on my countenance (body language, facial expressions), too, trying to keep things smiley and positive!

Soon it was dinner time and we grilled burgers, I showered and settled into a quiet evening trying not to move too much…The rain continued. My head still felt groggy and my joints were still screaming at me. Were the clean windows and pruned flower beds worth all that I went through today? Well, this IS a blog about the day in the life of a Fibro Momma. Was this a typical day? Yes, it was. Because no matter what I choose to do, there is always a level of pain that goes with it. Some days I can barely lift the coffee pot to pour the water in to make the coffee. Some days I HAVE to rest most of the day. But I do try to do at least one thing each day to be productive, even if it is only reading aloud to my girls. And even THAT makes for a very…productive…day!

Living Daily with Chronic Invisible Illness

The Weather and Fibromyalgia

fibropage1

The weather can be a real drag when you suffer from Fibromyalgia. Sunny days can cause rashes and even cause you to have a flare! Rainy days can cause a flare as well. What to do???

I have begun applying sunscreen each day as part of my morning routine. I use Neutrogena Beach Defense Water + Sun Protection 70 spf. It has Avobenzone 3%, Homosalate 10%, Octisalate 5%, Octocrylene 4.5% and Oxybenzone 4 % which offer broad spectrum coverage from both UVA and UVB rays. This is important for those who develop sun rashes due to Fibro and Lupus. I am one of those blessed people!

I have also invested in a few broad-rimmed hats to keep those sun beams from hitting my face and neck. I found one at Cracker Barrel Store & Restaurant this past spring and the I found two more at a Dollar General Store. (I happened upon them quite by accident as I was running in to grab something else!) I ended up buying two of them because they were-

1.) big and floppy

and

2.) only $6.00 each!!

I must say they are my favorite hats so far!

I am also thrilled at the clothing styles of today!!! Gone is the tight-fitting top and dress!

**Finally!! Yeah!!!**

Fibros know that loose-fitting clothing is a better choice for sensitive skin irritations! The peasant top is my new favorite. Long sleeves or at least three-quartered sleeves are a skin saver, even in summer! Yes. You read correctly. S-u-m-m-e-r. Those long sleeves are a must in summer and the peasant top offers loose-fitting, long sleeves that actually keep you cool!! I invested in several of them-some from Cracker Barrel (I love that store!) and some from Kohl’s and one I found on clearance at Wal-Mart!

Regardless of where you shop, just make sure your arms are covered and you stay cool! (That sounds like an oxymoron…stay covered and stay cool…haha)

….and don’t forget the sunscreen! All these precautions may not prevent a flare, but they may help minimize them.

Happy August-stay covered and cool!

 

Living Daily with Chronic Invisible Illness, Living Daily with Fibromyalgia

Fibromyalgia and Myofascial Massage

fibropage1

If you suffer from Fibromyalgia, then Myofascial Massage may work for you! Yesterday was my first day of PT for this. Before, I had tried water therapy via a pool where they had me walking and doing various legs exercises.  While in the pool, it was not so bad, but walking out….that was a different story! I felt the pains deep in my joints for days and days!

I saw my doctor the other day and told him that the pool PT only exacerbated my Fibro making it more cumbersome to get through my days and week. “Was there anything else we could try to help me GET THROUGH a week instead of making it worse???” I cried!

The doctor said that Fibromyalgia is one of those tricky conditions where what works for one person, may not work for another. He was willing to exhaust another option to help me find relief. So, heat therapy, strengthening my range of motion in my shoulders and myofascial massage were then ordered 2x weekly for the next six weeks. Well, I thought, I made it through the last six weeks of the pool stuff….however, it was at a real cost to my body. It made me feel worse (is that possible…???) for days and I never felt like it helped.

But I did try. That counts for something.

Next round of therapy-bring it on!

I arrived at 8:45am to Physical Therapy with renewed hope. Heated, wet towels were placed over each shoulder for ten minutes while I rested and tried to relax. When the time was up, the therapist came in and began to explain that she was going to run the muscular part over my shoulders and down into my shoulder blades.  Now, my pain has a trigger spot there that if hit in just the right way will send me to the sky! I tried to keep relaxed while she began. She used a long, flat, metal tool called a Graston tool. It felt like she was scrapping my muscle and skin (in a good way!). Sometimes it was intense but it truly felt like a good pain.  She said some Petechiae were beginning to show. This was a sign I was having trouble spots and that I was reacting to the treatment in a normal way.  When these tight areas are manipulated, they begin to break apart causing this rash.

She took this picture to show me what was happening. Wow, that looked pretty bad! However, I felt like my body was relaxing as she worked on each side of my spine. It was the first time in years I felt a little bit of relief. That was something…*sigh*

Petechiae spots on my shoulder

I was told to drink plenty of water for the next couple hours to rid my body of the toxins being released from the nodules and then we discussed improving my range of motion. I have noticed over the past year that lifting my arms over my head has become more and more cumbersome. I was taken to a pulley (no weights, no tension) and as my left arm pulled down it raised my right arm up. I had complete control as to how high I raised my arm. I admit the stretch felt rather good. I switched arms and pulled down, then repeated with each arm three times.  She gave me a pulley to use at home, daily.

This morning my shoulder joints are throbbing, but that is not a new symptom for me. Fibros know we run 24-36 hours behind what we do….(be positive, be positive, be positive…)

All in all, my immediate thoughts are that if you can find a therapist trained in the art of Myofascial Massage, it may be worth asking your regular doctor or Rheumatologist about. Perhaps you will be one of those who can find a bit of relief with this method. I am hoping to be one of them!!!  I have another PT scheduled for tomorrow and I am actually looking forward to it!

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

**If you found this read helpful, please share this page on your Facebook or become a subscriber by clicking the tabs in the upper left-hand corner and  click subscribe! Thank you!

Fibromyalgia Pain

Daily Life and Fibromyalgia

fibropage1

Daily life with Fibromyalgia is not an easy thing. Life still goes on. The sun still rises and the family still wakes up. Shopping still needs to happen, laundry still needs to be washed, dried, folded and put away. Dishes still need to be completed before the next meal….and we don’t need to talk about the “next” meal! There is always something to be done when you run a household.

Fibromyalgia makes everything more challenging. When I was first diagnosed, my pain days were several times a week. It gradually went to all week and then some days were worse than others. Today, I can barely get through the mornings, rest, then barely get through the afternoons before collapsing in the evenings. This is not me complaining. I am just telling it like it is.

Fibromyalgia has turned this “go-getter” of a woman into a shell of my former self. I look like the same me…only slower. I don’t look like I am suffering…because I still smile and try to be friendly (when most days I am fighting back MAJOR tears just from walking). I still plan out things, but most of the time I am the reason the “plan” changes.

Most people have no idea what I am dealing with. Fibromyalgia is called the “Invisible Illness” because it affects the inside. That alone is a blessing! I have often said if I looked like I feel, I would scare the heck out of everyone!

Fibromyalgia is not consistent. The PAIN is, but the places where the pain hits varies. Last week it was my feet and hips. This week it was my hips and tailbone….and feet…

Some days my head is so sensitive it hurts to brush my hair. Some days I can barely lift my arms and hook my, um…here it comes…bra- *sigh* Some days my hips hurt so bad I can scarcely walk, sit or move.

Fibromyalgia messes with the brain, too. They call it Fibro-fog and it is a real thing and it is a drag. (I should take stock in Post-it Notes!)

Each day with Fibromyalgia is a constant battle. I can have a flare 3x or more in a day. I need to rest at those times throughout those days.

Today, I shampooed the carpets while my husband and sons redid faucets and fixed the leaking pipe. It took me 2 hours to do the hallway and living room. Back and forth motions and Fibro DO NOT mix. I knew what was in store for me later, but it needed to be done and, yes, I am one of those types who likes to clean and likes the satisfaction of a job well done. This goes against my Fibro body. When the carpets were done, so was I. (actually, I was done half way through!!) I gingerly sat in my comfy glider as silent tears slid down my cheeks from the intense pain I had everywhere. My prayers increased as I waited for the pain to work its way up and out. (The pain never did make its way out, just saying.)

I ended up laying on the sofa and dozing off for 45 minutes. I awoke with the usual “Oh, my word, can this pain get any worse tin-man syndrome.” Slowly, ever-so-slowly, I managed to move my limbs and work those joints. 20 minutes later and two daughters to help me up and I began moving again. That was a flare moment.

Now, I still moved rather slowly the rest of the day, feet throbbing, tailbone needing a pillow to sit in the chair at the dinner table. It is the way my life is-my “thorn on the side.” But guess what? I have Jesus to give me His strength all day long.  This is the life He has chosen for me and I cannot feel sorry for myself, although that can be a battle of its own some days.

Fibromyalgia has taught me how to live life one minute at a time. Yes, I feel robbed of my old self…I miss my old brain…and I morn those things often, but that it all a part of the acceptance process to which I am still in the process of accepting!!!

Life still goes on, even with a chronic pain condition.  You can get through the day,  even if it’s only a moment at a time. And really, that’s how everyone should get through their days!

So, from one Fibro to another-gentle hugs and God bless you!

 

Living Daily with Fibromyalgia

We Interrupt this Day for a Major Fibro Flare

fibropage1

So, today I had a major Fibro flare.

See, I sewed yesterday with my ten-year old daughter who has been wanting me to teach her how to sew an apron. (It was on my summer “to do” list and well, it is summer, after all.) Of course that means I had to make an apron for myself so she could follow along. Six hours in a chair is WAY too long for a Fibro victim. (It was an intricate pattern with ruffles and gathers and cutsie-like)  She was proud as could be of her apron, though, and she decided to be head chef last night just to wear it! Fettuccine Alfredo was on her menu and it was quite good! I’d say it was a home-school home-economics success day!

This is where the Fibro flare begins. I awoke this morning and could scarcely move. Major Tin Man syndrome! Nonetheless, my pie baker and I decided it was a jam making day… (those darn berries and peaches just HAD to ripen today!!!) 20+ jars of home-made strawberry and fresh peach jam later and I cannot move my shoulders or hips for anything! I even had to walk outside to get into the upper level of our home when done. Stairs would not be happening today!! (Our home came with a canning kitchen in the basement. Great for canning, but not for Fibro stair climbing!)

Now my head is hazy and I have just awoken from a rest to which my joints are not finished resting…what did I do recently to cause this??? (Fibro fog)….oh, yes. Jam. We made jam (was that today???)…that means a lot of chopping and stirring (repetitious movements and Fibro don’t mix!) But the end results, well…that is something to smile about!

It’s just a normal day for this Fibro Momma…now I am craving a piece of toast with that fabulous peach jam…

 

Fresh Peach and Strawberry Jam we made this summer 2017

 

Living Daily with Fibromyalgia

Ripe Peaches and a Fibro Day

fibropage1

Yesterday we drove just over 1.5 hours away to play music at a nursing home. As always, it was great fun meeting the residents and playing music! Then we all stopped at our favorite place-Cracker Barrel- for dinner. Does anyone NOT like that place? Seriously, it is the best! (Just saying!) Afterward,  we headed farther East to play music at a church. That was also a fun time! At 11pm we pulled into our driveway, unloaded four kids, two younger adults and two parents and equally as many instruments, sound equipment and other things from the day. At midnight this Momma lay down and waited for the pains to crawl out and eventually I drifted off to sleep.

At 6am this morning I groggily (is that even a word???) pulled myself up as those morning aches tried to overtake me. 45 minutes and a cup of coffee later, I was trying to get my mind to function when I suddenly realized our peaches we ready to be done! Needless to say, my day was now outlined for me and  that is how the day was spent! 2 Bushels of ripe, sweet, juicy peaches were put in the freezer. My thirteen year old daughter decided we just HAD to make a peach pie for her daddy before we could stop! (Maybe before SHE could stop! I think I never started!!!)  The mess got cleaned up and I collapsed onto the recliner for a 20 minute refresher (Did I just type refresher? One must be able to be refreshed to have a refresher. I will debate that later)….and as my body still screams at me to stay put, I am now headed to make dinner. My Basil is beautiful and I have been wanting to make this great Italian pasta dish with fresh Basil. Why not today? I feel like the Little Engine that Could. You remember that story? I don’t think I should wait to make this amazing dish…but my body says….NO and my tastebuds say YES!…now, THAT is a battle. The tastebuds win!

My joints say, NO WAY as up the stairs I trod…”I think I can, I…think I…can, I….think….I…can……I………thi….”

 

The peach pie my daughter made

 

“It’s just a constant battle: me against my body; my passions and my dreams and what I want to do with my life, against what I am now physically able to do.”

Living Daily with Fibromyalgia

New “Normal” Fibro Day

fibropage1

Today was what I would call one of my regular “new normal” days. I awoke with the usual pains and stiffness while slowly making my way to the bathroom to begin my daily routine. I got my husband’s coffee and apple prepared for his departure to work. I poured my own cup of coffee, made our bed and helped get the kiddos off with our oldest on an outing. 

I did not go with them because A) It is an hour and a half away where they were going and driving would not be a good thing for me to do coming off a migraine day. B) I was told that today was set aside for me to do lesson planning and to enjoy the quiet house. However, my mind was not with it. *sigh*

We had a bit of a stressful situation prior to the kids departure and I needed to give it to God. So, a lot of prayer to recollect my thoughts, a walk to the mailbox to mail a bill before the July heat took hold and I was all set with a new view on my day. I fell right into planning! An hour later I took a break and rode my Airdyne Bike for 5 minutes. Stiff and sore from that I sat back down at the computer to research the Unit Study I was preparing for this coming school year.

The heat was getting pretty intense outside so I asked my oldest son who was still here to help me hang out a sheet cover over our straw bale garden. I was clad in floppy hat and sunglasses and we got that done. While outside, I picked a cup of green beans, came in and blanched them, then sautee’d them with fresh garlic and ate those for lunch. I then said goodbye to my son as he headed off to work.

Alone, I went back to the computer. Two hours later, all the kiddos came back home and we rested with a Magic School Bus episode. (I needed to rest my body from sitting at the computer, anyway, before I began the point of no return).

Then my oldest and youngest daughter and I went out into our pasture to pick our peaches which were ripe and sweet. After 30 minutes, it began to rain. We hurried. The wind began to blow a much-needed cool breeze. We went faster. One up on a ladder handing me peaches while I passed them to the youngest who placed them in the buckets. We hauled 2-five gallon buckets and a smaller pail filled with sweet peaches across 3 acres before (what looked like) the storm hit. (By the way, the storm never did hit and we hurried unnecessarily, pain and all).

Once inside, one daughter boiled the peaches, another peeled them, another sliced them and I put them into a fruit saver bath, then placed them on cookie sheets to be frozen and then bagged for future use.

During that time, I also mashed pinto beans that I had been cooking in the crock pot all day with yummy seasonings to make bean burritos for the evening meal. My body was aching by this time. I sat down to watch the evening news with my husband and wanted to melt into the couch. But, alas, I needed to get up, but could not get up without help. I was so sore I wanted to cry! I then staggered up the stairs and into the shower thankful for a productive day.

Now I write this with aching shoulders, elbows and hips, hands and feet. It is what it is.

Yes, this was my “new normal” type of day when my pain was not too terribly intense, just persistently there.

Fibromyalgia Migraines, Fibromyalgia Pain

When a Fibromyalgia Migraine hits…

fibropage1

Today was a Fibromyalgia migraine day.

I awoke with the familiar feeling of how migraines befall me. The normal awakening to feeling run over and hurting was there, but it was the deep joint aching. Almost a burning feeling. Like your tendons and ligaments are literally peeling away from the bone. That hazy head feeling with a throb or two off in some distant place inside your skull.

Well, I could not stay in bed even though I wanted to. And I wanted to… “But why?”…my thoughts asked me. “Why can’t I???” My mind was all jumbled up this morning! “Oh, yes,” I think as my muddy mind starts to separate a bit and the words begin to form a puzzle of words together, “Now I remember.” My daughter had to have an X-ray and blood work done at the hospital this morning. I must get going.

So, I began the getting up process. Slowly…step by step, squishy flip-flops on to help the feet…

An hour later we were off. I asked one of my sons to drive us there because I was hurting. He gladly said yes. That was nice!

Three hours later we arrived home. My head was throbbing in waves and then the nausea befell me and it was all over. Three Ibuprofen and a cup of water,  a bite of protein bar for it all to land on, and off to my room I went, apologizing to the kiddos for my abrupt exit as I mumble “It’s another one of ‘those’ headaches…” and I scuffled down the hall.

Why didn’t I take the Motrin before I left you may ask??? Because one of “these” headaches and when I take the Ibuprofen actually makes me feel worse before it gets better. If I don’t sleep through the battle of meds and pain, it kills me. Had I taken the meds and then tried to drive…no way! Even with my son driving, I would not have been able to function for my daughter’s sake. Nope. It had to be at home where I could rest. It’s a sad state I was in, to be sure.

So, three hours later, I awoke, and I now write this to you all. My head is over the hump. The pain is off to some distant place in my head and I pray not to return anytime soon. Unfortunately, Ibuprofen does not help my joint pain, really. I currently feel almost paralyzed from the pain in my shoulders and hips. This tin “man” needs an oil can!! Rusty I feel. But not to sing, I’m afraid.  (Some if you are happy for that! Hahaha) it’s like morning all over again. My brain blots out much of the things before the headache hits, too. I feel like I’ve lost a day.

I do a lot of praying and even more than usual, on these days. I ask myself “What caused the migraine today?” I still cannot pinpoint that one. I had PT yesterday…but I went in hurting and on Ibuprofen in the hopes of easing the discomfort…I pulled weeds a day and a half ago for 10-20 minutes, trying to allow my Mum’s to breathe so I can enjoy their beauty in a couple months…maybe that’s it. I did cut up 15 pounds of boneless chicken breasts yesterday for “quick” meal options. Those repetitious movements are hard on me… maybe that’s it. Regardless, it happened. I go crazy some days trying to figure out what I did two days ago that caused me more pain two days later. It’s not raining today, either.  It’s a paradox.

I now need to figure out what to make for dinner…but do it very, very slowly.

 

Living Daily with Fibromyalgia

Fibromyalgia Frustration

fibropage1

What is my biggest frustration?? Well, it would be choosing how to use what energy I have to complete the things that need to be done in a day. Especially when there are so many things that need to be done.  If I break these down to the bare necessities then I am faced with the challenge of the evening meal. Do I start dinner this morning? Do I put dinner off until this afternoon hoping that I can still make it or will it become a quick meal like sandwiches because my body quit on me before I was ready? Well, my husband deserves better than a sandwich for his Hard Day’s Work and therefore if I choose to start dinner in the morning then that means I cannot lesson plan. (I am a homeschooling mother and summer is my lesson plan time). I have to choose how my energy is better spent. I have to decide what to make for dinner.

Now, I have two whole chickens sitting in the refrigerator. I can season them up, toss them in a crock pot and walk away and then this afternoon make some rice and vegetables and call it good. However, baked chicken is not my husband’s favorite thing. Okay, so do I cook down the chickens all day and make a nice broth and thicken that and boil some pasta and make creamy chicken and noodles? That will work except that I will have to de-bone the chicken after it’s cooked and I don’t know how I’m going to be feeling when that time comes to de-bone it. So then I think maybe I’ll just make individual chicken pot pies! But then, the cloud befalls my mind when I think of all the work involved in that and will I feel like I’m able to do that this afternoon????

So now I’m back to the baked chicken as it will still put out a nice meal for my family and cause me the least effort and hope my husband will still smile while he eats it. This might sound like a random problem…or not even a problem at all,  but for those who suffer with Fibromyalgia you know exactly what it is that I’m dealing with. I have always been a planner.  I would plan a day to time, then a week at a time, a month at a time, and even a quarter of the year at a time.  I had short-term goals and I had long-term goals.  My family is large. I home-school.  I have to do these things. But now I am literally to the tentative daily plan and “hope”  that I can accomplish what I need to do in a given day.

Today I am coming off of the 4th of July holiday.  It is also storming.  Needless to say, I cancelled my PT appointment for this morning.  Both the holiday and the weather are an unfortunate factor for me in getting through a day.  So here I sit, writing this down.  My immediate goal is what to make for dinner and do I use my energy on that or the lesson plans that I’m supposed to be spending my day working on? The frustrations of Fibromyalgia,  there are no words.  Well, there are words… But we won’t use those here. Now, where did I say those chickens were???

Living Daily with Fibromyalgia

4th of July

fibropage1

I have Fibromyalgia and Lupus. I love holidays. The 4th of July is no exception! I love this holiday but holidays don’t always like me!

I awoke to the girls putting up decorations on our covered patio at 6:30am! I began to think about our son who serves in the U.S. Navy and is under the sea today making sure the freedoms we all take for granted remain. I try to remember what I am supposed to do today. (Where is that list…?) Well, I do try to be upbeat and happy on days like this no matter how I feel physically for the sake of my husband and children. It can be exhausting to stay that way, but I do my best.

So, I saw the kiddos off to the Independence Day parade with our 21-year-old daughter driving the herd, after french braiding two heads of hair, clad with ribbons and glittery star headbands. Braiding makes my hands hurt, but I do it anyway for my girls. My 13-year-old does her own hair, thankfully. All three have beautiful long hair which requires a lot of brushing. That, too, makes my hands hurt. It is what it is.

After they left, I pulled cupcakes out of the oven and prepared my home-made icing. Into the large icing bag it went and off my hands went…1, 2, 3,…12, …27…42…yes, I iced 42 cupcakes. They were beautiful to the eyes and great to the taste buds. But these hands of mine…oh, yeah…I am still trying to compete with my old self. You know the one…Years before being able to ice cupcakes in a single blow, braid four heads of hair, clean up the breakfast dishes AND go to the parade, all while walking and carrying a baby and pushing a stroller?? Now I can barely get through the morning. Did you notice this paragraph began with “After they left…”??? That means no parade for me today. No driving 40 minutes, no walking several blocks, No sitting in the sun…nope, not happening. Okay, I admit I am my worst enemy. The competition with my old self is genuine, I can assure you. I am at war with that old me every day. It is a battle to stay positive when my flares come and go throughout the day.

Here is a glimpse of my day today: Just walking to the bathroom upon awakening and my feet HURT. Like I mean to put pressure on them. Like they are gonna burst from pain.The mornings are the worst! Then my back began to scream at me while I was braiding head number one. By head number two, I wanted to cry. But I didn’t. Why? Because I am a warrior. This is my life now. Things must be done. I want my girls to have a mom who takes care of them and gives them happy memories. Each day will become a memory. I want it to be a good one. Okay, so they left, my hands ache from icing, my back still screaming at me while I cleaned up the mess I had made and I still needed to make the burgers. I was dying to rest, but I needed things from the basement to finish the necessary preparations. Up and down 4 times, I mixed and made 16 burger patties while my husband made 12 jalapeno and garlic brat patties. (His wrist is still recovering from the break and the many screws and plate surgery and he needed the exercise!) My back is roaring now…I sit down. Pain is bad. I lay down on the couch…it’s getting better, at least once the pain stopped sending waves of current like electricity throughout my body. 15 minutes later and the kiddos are home. My husband grills. We eat. I am hurting. I take three Ibuprofen. Two hours later, I am still hurting and am like “three Motrin and I still want to cry….now what???” I ask my 18-year-old son to rub out my back while I am (making a memory) playing a game with the three younger girls and fight the tears as I smile at the game and bite into a (You have to eat this, Mom) cupcake. Now they run outside to blow up firecrackers with their big brothers. Company is due here in 45 minutes.  I go lay down for 20 minutes with our very pregnant Dachshund and her sidekick in tow and manage to doze off with two dogs cuddled around me. Company arrives and I smile….has the Motrin kicked in…? Now it is time for food!!! Then side-walk chalk drawing contests! Later, I watched bubbles being blown and I heard firecrackers popping. Then, I am gathering the troops for pictures to be taken, more brat patties eaten and now….I…. am….spent! I sit in a chair outside…Whack! One dead mosquito. Whack!… Missed that one. Now I am inside.

Off go the kids to see the light displays in the neighboring town with our daughter and sons and my hubby and I are off to bed. I take a very hot shower, thank God for a nice day, grab my computer and climb into bed, all while my feet are throbbing and my back is hurting. Now, here I am writing to whoever reads this…yes, it was a good day! But a normal day of painful living. I look over at my handsome man and am so thankful for my life, no matter how much I hurt. The enemy cannot get to me today…Let’s hope that attitude sticks through til morning because I have P.T. tomorrow at 9:45 am…Oh, boy…

Living Daily with Fibromyalgia

Travel and Fibro Pain Don’t Mix

fibropage1

Travel and Fibro always leave me hurting!

Well, this past weekend I traveled 1.5 hours away and celebrated 27 years with the love of my life. He is the best! We had a nice time. I was on Ibuprofen around the clock because I had another blessed PT appointment the day before. We ate at a sweet Italian restaurant Friday evening and on Saturday walked the waterfront clad in sun bonnet, sun glasses and sun screen (that is a lot of “sun” words for a person who is not supposed to be in the sun…) and then went antique browsing. (I am blessed with a hubby who enjoys this!!!) After a couple of hours, I was ready to drop! I was so exhausted, could scarcely move my feet and the pains were emitting from everywhere! We stopped in at Steak and Shake for a bite of lunch and a much-needed rest. (Remember that my hubby has a bone marrow disease and he gets fatigued quite easily, but thankfully does not have the pains I do!!) It was a nice afternoon spent together making memories, nonetheless, and then we headed home.

The next day we all went to church, came home, grilled, rested and watched the kiddos play.

Monday morning…well, let’s just say that I don’t remember much of it except that I could NOT get comfortable all night, I hurt so badly. I was freezing cold-and under two quilts! Finally at 5:30 am, I made myself take some Ibuprofen and fell back in bed. I awoke at 6:30am in a pool of sweat and pulled myself up only to realize that today would not be a vertical day! I told my husband goodbye and have a nice day, and he said “go back to bed”-I must have looked pretty bad, huh??? haha

The pains were EvErYWhErE-places I did not even know could hurt, hurt. I felt like I had the flu. Was it from the Anniversary sun walk? Too much sun or too much walk?? Or both?? The car travel? The change in the weather??…hmmmm, it was a lot cooler…The PT??? Oh, and I am sure I had a fever earlier that morning, too. Was this a Lupus flare? A Fibro flare? I did not even care… Pain is pain. What causes it is the question of the hour. Let’s not psychoanalysis it to death.

Okay, so I willingly obeyed my sweet man and fell back into bed and awoke on and off until noon. More Ibuprofen, more pain. MORE PAIN? Okay, so I finally made it back to the land of the living for a little while…well, til about 2pm and found myself waking up at 3pm.  Needless to say, it was not a good way to start my week. I changed my next PT appointment from Tuesday morning, to afternoon (remember my promise to see this through???) Today is Tuesday…in the afternoon. I do not want to leave. I still hurt. I am writing this in pain. If it were not for auto correct, you would not be able to read this.

Remember, this is supposed to be a blog about the day in the life of a Fibro Mom. That requires me to write DAILY about my life.  Thank you in advance for your assumed understanding that this will not be daily read. I am trying. Like my poetry page…which I do plan to add to….soon.

Fibromyalgia Pain

Fibromyalgia and Pool Therapy

fibropage1

Last month I began Physical Therapy. (I am doing everything I can to try to ease the pains of this dreaded disease). Because of the Fibromyalgia, water therapy was recommended. So, down into the water I went, doing walking laps and other various leg exercises. It felt pretty decent while I was doing it. Once out, I managed to get dressed and head home. I was quite stiff upon getting out of the car… I had lunch waiting for me by my sweet blessings and then proceeded to collapse on my bed in a rather fatigued way… only to awake two hours later in intervals of painful movements. Yes! I think the PT is… working??? (sarcasm)

That first morning after, I could barely walk due to the toe and foot exercises in the pool the day before and my hands would not participate in the normal movements of the morning either, all from holding onto the rails in the pool for the “step” exercises. Was I giving up? Well, I wanted to. I wanted to say “NOT ANYMORE!” However, I decided to give this a six week chance. I have read that you have to get through more pain to help control THIS pain. (I am thinking that the person who wrote that does NOT suffer with these conditions!) 

I continued on two times a week for the entire six weeks. Some weeks I had to cancel a session due to the pain, some weeks I made it to both. Some days I took Motrin just to get through it, some days I took Motrin after I got home. All in all, I feel that the Pool Therapy was more of a hindrance to my body than a benefit. It made it harder for me to get through my daily life instead of help. 

But that is how it affected me. You may be different. Ask your doctor if Pool Therapy is right for you. If your doctor is like mine he will let you try in the hopes it’ll bring you relief, but until you do try, you will never know!

Gentle Hugs!

Living Daily with Fibromyalgia

Doing daily tasks when you hurt

fibropage1

Today I hurt. This is not unusual since I have Fibromyalgia. I spent the past seven days living my life as wife and mother. With Fibro it is not as easy as it used to be *sigh*.

Last weekend, I made and decorated a cake for our son’s high school graduation party. After “writing” Congratulations with the icing bag, I thought my hand was going to never stop throbbing and would permanently stay in the fist-like position. I continued on with his name, only the letters were not as smooth as I used to write over the past twenty years of cake decorating! My hand shook uncontrollably and my eyes held back the tears of pain. I was determined to do this for my son as I have for every birthday he’s been alive to witness!! The letters now looked like zig-zag letters, Oh, well, I did try. These hands of mine would not cooperate!! Well, by this time, my hips, shoulders, back and elbows were screaming at me! I left the mess to be cleaned up by the graduate himself and slowly paddled my way down the hall. I was on a mission to find my daughter because I was in need of assistance with the shower!!! (My body was boldly proclaiming HOT WATER!)! I could not even unfasten my, uh…bra…YEP, I was in pretty bad shape! Wonderful daughter to the rescue! One might ask why did I not ask my husband?? Well, his left hand is still recovering from his wrist surgery (T-plate and seven screws) and he can scarcely button his own shirt, let alone help me.

Okay, so into the shower I went, fisted hand and all. We won’t talk about how I got dressed…
Graduation weekend was now over (cake was delicious and a success, or so I was told…) and the coming week looked L-O-N-G. I do try to rest, but life has a way of not letting you do that, haha- Piano lessons, dealing with the insurance guy from the car accident our other daughter was in, fighting off the migraine from the weekend on Monday…and again on Tuesday, succumbing to the pain in a frenzy of feeling the Ibuprofen fight with the head and joint pain…(which, for me is often worse) and sleeping it off hoping to wake up to it GONE.

Okay, back to everything life was doing while I was stalled out…music practice, watering the garden, oh, and of course, COOKING meals, doing LAUNDRY and taking a day to go shopping with my oldest daughter for fabric for the baby’s room… (and did I mention I will be assisting in the sewing of the bumper pads and curtains???) Sidebar: Now, I do love to sew, I am actually quite creative, but sewing does not like me anymore. My daughter knows this and now I have 5 months to work on it little by little. Good thing since the whole “push til you drop” philosophy just does not work for me anymore. It is our first grandchild after all, and I want to do this!!! End of sidebar.
And, to top it off I ended my week at the wonderful “stay in the system” checkup at your friendly neighborhood doctor’s office. I seriously feel hypochondriatic when I am at these blessed appointments. Nothing like speaking out-loud what you don’t even like to think about. *another sigh*…and then, More blood work. It seems like I am destined for continual pain. Life keeps going, we must go with the life. It is the current we are swept into…But I will try to go slower….I….will….try….

Fibromyalgia Migraines

Fibro Migraines

fibropage1

Migraines are a drag. Fibro Migraines are worse because they engulf your whole being.

Time has a way of moving by too quickly, but when you have Fibromyalgia, it tends to go by slower, especially if you are having more pain than usual. When you get a Fibromyalgia migraine, you lose blocks of time out of your day.

Yesterday, the kiddos and I were getting the family room together for company that is coming in for our son’s High School Graduation this Saturday. Out of nowhere, I had a migraine come and completely knock me off my feet. You know the kind-that hazy feeling that suddenly engulfs your very core, settling into your joints-ALL your joints. Your neck and back begin screaming at you, your temples start to throb, light begins to hurt your eyes, your hands ache, you feel nauseous and you suddenly feel paralyzed with pain….All you want is to be horizontal….as fast as possible….Sound familiar? If it does, please know I can sympathize with you. Ibuprofen is my friend at these times and after 2+ hours with a covering over my eyes and (sometimes) one of my kiddos rubbing my temples until the meds kick in, I manage to doze off. Upon awakening, my body feels all stiff and I am like the tin-man desperately in need of an oil can! Those migraines literally make me feel like I lost part of my day- It’s like I forget a lot of what was going on before it hit.

These occur in my life several times a month. No pattern, no warning.
Today I will be leaving to go with my oldest daughter to help her pick out the bedding for her sweet baby who is due around Thanksgiving. I am looking forward to this!!! However, we have to drive about an hour to shop and being in a car that long is never fun for me.
I am taking it slower than usual this morning, not wanting to rock the “boat” and cause a setback.

The Lord is my strength on these busier days. One day at a time, right? Tomorrow I will feel it-as my journal has shown, but today I need to enjoy the time spent making memories. It is fun to watch my daughter getting so excited about the baby!!! So here is to today, whatever it may bring! Happy June and gentle hugs 🙂

Living Daily with Fibromyalgia

Hello World! I think this Blog has taken flight!

fibropage1

Well, I think this Fibromyalgia and Lupus Blog might actually be getting off the ground!

Today was a rough day for me after coming off a weekend of watching the kiddos play music. We had driven 1.5 hours away yesterday. Driving is so hard on my body-even just sitting in the 15 passenger van while my husband drives wreaks havoc on my body. Our ministry is Bluegrass Gospel Music. We travel most weekends within a 200 mile radius. My Mondays are always hard-Tuesdays can be, too.

Most Fibros know the cycle of feeling the hurt 24-36 hours after. I have been keeping a journal for over a year and I think I am now to the point of knowing how my body reacts to what I do. Some days I cannot “do” much… *smile*… Today was one of those days. I did manage to get the living room de-cluttered before my body began to scream at me to rest. Needless to say, I fell asleep for over an hour in the afternoon! It was needed, though.

This blog is about writing about my daily struggles with living with Fibromyalgia and Lupus. You can read about this on my “About Me” page by clicking on the lines in the upper left-hand corner of this page.

I am a real person who continues to live life (in pain) because life never slows down, but I do. If you like what you read, please click the “Follow Me” tab on your screen.

It is for fellow warriors I tell my story as the days go by. You are not alone.