Tag: Fibromyalgia

Fibromyalgia is a chronic invisible illness.

Living Daily with Chronic Invisible Illness

The Importance of Empathy in Chronic Illness Discussions

fibropage1

When a friend or relative says to you…

“You can talk to me about your pain.”-“Tell me how you are feeling.”-“I’m here for you.”-“Maybe it would help you to talk about your pain.”-“If you didn’t keep your thoughts pent-up, you may feel better.”-“How am I to understand what you deal with if you don’t communicate with me??”

… and so, you reluctantly open up and express how the pain makes you feel; from sun-up to sun-down and all night long. 

They stare at you.  You continue…

“When I wake up in the morning, I feel exhausted before I even rise, my pain is literally from head to toe, on varying levels. It is all I can do to get out of bed. It is challenging to get going. I will myself to do my morning stretches, because I know it will help me maneuver the day better. Throughout the day, I need to keep moving so my body does not lock up; I am still hurting with every move, though. I do my best to keep a positive attitude and a smile on my face, to hide how bad moving can be. Resting is important, but it is like starting the day all over again when I need to get up. I keep moving to keep the pain levels down, but the pain never goes away.

“I feel tired and worn out all the time no matter what I do.  I get these electric-like jolts that attack my head, sometimes my hips or back, randomly, and without warning, making me look like a scene from the movie ‘The Jerk.’ In the morning I may hurt in a different place than the afternoon. I may have a swelling knee at noon and the inability to walk by 4pm, lack of dexterity in my hand(s), back pain that doesn’t allow be to bend over, plantar fasciitis may rear its head again, or my hip may fail me, or a completely different issue between it all.  I NEVER KNOW. The migraines are the worst, though. No warning and all-consuming.”

You continue on, likely sounding like a complete hypochondriac, but knowing you are not. You shock yourself with how bad it all sounds in the first place, but, because they asked you to share your pain with them, you continue on, spilling open your vulnerable heart.

They seem to be listening, and then…

Instead of the compassion and sympathy you might have expected to receive, they start telling you all of the things they think you should be doing, haven’t done, need to try, because they just KNOW that what you are going through must be blown out of proportion, or your pain tolerance is weak. 

“Perhaps your pain is caused by the detergent you use, or your shampoo, or the candles you love, maybe it is what you eat, or what you don’t… lack of exercise… how you exercise… not enough sun… too much sun… You need to take these vitamins and stop taking those… ‘I’ve heard microwaves may do something…’ You need to try this…, Oh, have you tried that? …”

… and on and on and on as you sit there, getting anxious, irritated, and your body starts to stiffen up, causing you even more body pain… pain that you would never mention after this conversation… and now-emotional pain, and you stifle back the urge to cry while you silently beat yourself up for saying anything at all in the first place… 

You know they mean well… (or do they???) …

… and then… they, (with no arthritic or health issues at all), begin to tell you how bad they can feel in a day just being alive (clearly stating their pain was worse when they bumped their elbow that morning), or how tired they are all-day-long, and they “GET IT” (anyone who has had a similar conversation knows exactly how irritating that “I Get It” can be, especially from a person that has NO CLUE)… and you interrupt them and ask ONE question…

“Have you ever read up on Fibromyalgia or Lupus?”

… and their response is…

“Well, no, not exactly.”

… and then…

… you say, “How can you sit there and try to give me advice when you have NO IDEA what you are even talking about????”

and then… you realize you’ve become a victim, and you vow to never expose yourself like that again. You feel robbed of your person, exposed, judged and helpless. 

At this point the conversation becomes useless and bothersome, and you end it-immediately (which probably should have ended before then, anyway).

So, unless someone has researched these conditions and tried their best to put themselves in your shoes and not just listen to you, but hear you, empathize with you in their heart, give you a gentle hug and be the friend they “claim” to be, they have no business asking you to open up and then unleashing all the words that don’t help. 

Anyone… I mean anyone, who researches Lupus and/or Fibromyalgia should be empathetic to the sufferer’s plight and realize it’s not environmental, lack of this, lack of that, etc. 

Toxic people do not help sufferers of Lupus and Fibromyalgia. Purge them from your life. 

If you have a loved one who suffers from Lupus and/or Fibromyalgia, be mindful before you ask them how they really feel. Do your research on these conditions first before you open your mouth. 

God Bless-

The Fibro-Lupus Momma of Ten

 

 

 

 

 

 

Living Daily with Chronic Invisible Illness

Myelofibrosis and Fibromyalgia

fibropage1

Dealing with Fibromyalgia and taking care of your spouse who has Myelofibrosis can be complicated, but taking things one day at a time; one moment at a time, is the best approach. 

Seven years ago my husband was diagnosed with MDS-Myelodysplastic Syndrome. Four years into that, a bone marrow biopsy changed the diagnosis to include MF-Myelofibrosis. This has been quite a road we’ve been on! Our family played bluegrass Gospel music through most of those years. Click here for more info on our family band.

Two years ago, talk of a Bone Marrow Transplant began. A failed clinical trial in 2019 and Covid-19 later, and we are now on that path. 

On June 14, 2021 he began Chemotherapy to prepare for the transplant. It was a rough week, but honestly, the week after and the week after that has been worse.  Today is July 3-18 days after his first dose. I am currently sitting in a Cancer Hospital in the city while my husband is being treated for Neutropenic fever. We have been here for 3 days so far without an end in sight.

(Being a holiday weekend, I made arrangements for our oldest daughter to take care of our youngest three still at home. She is planning to make as memorable a weekend as possible for them.) 

My husband is still running a low grade fever and coughing non-stop. They have tried everything. He has two inflamed lumps under his arms they have been treating with multiple antibiotics. He is worn out, constantly needing transfusions and wanting to be at home. My heart hurts for him. I fear this is going to be a long summer…

As a Fibro sufferer, I have had to really take care of myself through all of this.

Easier said than done! 

I need to eat healthy at the cafeteria, walk the halls often, rest when I can, and not let the stress of concern affect me. I have to give each little thing over to God and take it day by day. It takes practice, but it is the best way for me to manage the pain I constantly have in my joints and body (an occasional Aleve helps, too).

I always think that how I feel is nothing compared to what my husband is going through. While this is true, I still have a medical condition and need to take care of myself so I can take care of him.

He needs me to help him because I need him to help me!

One day at a time; one moment at a time. 

That is my “road to transplant” motto.

Blessings to you-The Fibro Momma of Ten

Living Daily with Chronic Invisible Illness

Still Alive

fibropage1

I pretty much shelved this blog due to all the Covid19 goings-on. The drama online was enough to keep me from the internet. Nothing has been positive and all seems to be gloom and doom, political and demeaning.

So here I sit, many wondering if I am still alive and kicking…

Alive, yes. Kicking…well, if you have Fibromyalgia, kicking is not really an option. (Smile)

Actually, I have begun riding a stationary AirDyne bike (not using the arm functions)…it took me 15 minutes to go one mile when I began Memorial Day Weekend. Yep… It hurt. And not only did it hurt, but it hurt for days after. Maybe it is because I kept doing it each day…hmmm

Here I am, almost Labor Day Weekend and I am now up to one mile every 5 minutes (the arm functions make my shoulders scream in pain, so I barely use them)…but the bicycle part I can now do a mile in 3.5 minutes…on a good day. Most days I do up to three miles in succession, but I aim for a minimum of three miles each day-or up to five if I possibly can!

Yes, my endurance is improving…yes, my pain is still there…but my overall body functions have improved.

What does that mean…?

Well, for starters, my heart doesn’t palpate as frequently. My blood pressure has improved. My blood sugar levels have gone down. My energy level has slightly improved (which is saying a lot considering my energy level was pretty low), and my overall mental cognitive abilities have improved, as well.

Yes, riding the bike has helped me.

Do I still hurt? Yes.

Do I still wake up feeling run over? Yes.

Do I still struggle getting up and down from a chair, rolling over at night in bed, walking, etc? Yes.

The way I see it, the bike is helping my cardiovascular system, improving my general well-being as well as my brain. The pain will be there anyway, I might as well improve my internal health.

As for the Covid-19…so far, so good.

Yes, I believe in this virus. I have some distant family that have all had it. It is real and it can knock you off your feet for weeks. I DO NOT want it.

Truth be told, I CANNOT imagine feeling any worse than Fibromyalgia makes one feel.

Over four times I have felt like I was “coming down with something”…knowing it was the beginning of a Fibro Flare…and praying it wasn’t Covid-19. Of course, it was a Flare…and those are hard enough.

Yes, I am still here…living life reclused…online shopping…grocery pickups…visits from across the yard…wearing masks…washing my hands for 20 seconds throughout the day…using ridiculous amounts of hand lotion afterwards….and pacing myself…resting…fighting the fight that Fibromyalgia brings…

But still here I am and happy to be! Pain and all 🙂

Stay healthy!

…and have a good Fibro day…

God Bless-

~The Fibro Momma of Ten

Fibromyalgia Pain, Living Daily with Fibromyalgia

Just a Blog About Fibro

fibropage1

Today I am just writing a blog about living with Fibromyalgia. 

What does that mean? 

It means that I am just a normal person whose life has ups and down same as anyone. Sad days, happy days. Emotional days and steady days. I am just your average Jolene who has a life she is trying to live each and every day. 

It just so happens that I also suffer from a multitude of  chronic pain issues.                               Like in every joint.

Today I am also suffering from eye problems. The whole time I am typing this my eyesight is blurred. I wear bifocals now and I am constantly moving my head up and down looking for a clear row to see through. Not every day is a bad eye day, but today is. 

Fibromyalgia sufferers can have problems at any time on any given body part.  From the head to the toes. Random pain. It can last for one minute or one hour…or longer. It is a part of the condition.  

How do I handle this?

Well, I was diagnosed in 2015. Click here to take you to my story. My life is busy. Unyieldingly busy. Is that even a word???

I have a husband with blood cancer, two sons in Marine Corp boot camp, one son in the Navy, and a family bluegrass band that is still kicking after the boys departure and  variety of farm animals to take care of. I home school, and have for over 22 years. I love my busy life! I have a great family! But I also have Fibromyalgia. 

Today is a wet, cold, dreary fall day. I used to love these days. I still do, to a degree, but the pains these types of days bring me is not lovable. 

On top of that, my basement began leaking (again) and the morning was spent using the shop-vac and trying to find the leak. Add that my girls are at their sisters and my hubby and I are the only ones home! 

My body aches! So does my husbands. His condition makes him tire way too easily and energy, for him, is scarce.

Let’s just say I wish the sun were out. 

Today I am living life. Today life brought me rain and a leaky basement. But, today also brought me comfort in knowing I have another day yet to live.

So, rain or shine-Here is to life!

God Bless-

~The Fibro Momma of Ten

Fibromyalgia and the weather

Fibromyalgia Zombie

fibropage1

Today I am zombified. Is that a word? Well, when you have Fibromyalgia, it should be a word.

My definition of zombified is when you wake up and suddenly realize your body and mind don’t work. You feel intense pain in all your joints, down your spine…everywhere, kinda like the immediate onset of influenza! Your mind is mush and you can barely function on any level. You are staring out into space and would be content to just sit all day…and do nothing, because that is all you can do.

Zombified…That is me today.

Having Fibromyalgia, I never know what a day will bring. Today it brought this.

Last week in the Midwest, the weather brought a heat advisory with humidity in the upper 90’s and the heat index of 106. It was so hot and muggy you could scarcely breathe outside. Oddly, my Fibro symptoms were mild.

Yesterday a cold front came through and knocked the temps down into the 70’s with the humidity even lower! yeah! Well, “yeah” to enjoy sitting outside, but NOT “yeah” to my Fibro body. The switch in atmosphere has done a number on me and now I am “zombified.”

Three cheers for Fibromyalgia!

What, no cheering? Even I can hear that!

I pray you have a great day no matter where you are…and how you feel.

God Bless-

~The Fibro Momma of Ten

Living Daily with Chronic Invisible Illness

Fibromyalgia and Brain Fog

fibropage1

When you have Fibromyalgia and your brain does not cooperate with what you need to get done, it makes getting through the day quite the challenge!

This morning I set out to check off my list of ” things-to-do-today” as I did them.  However, I had numerous interruptions; ie, the internet man showed up earlier than expected to fix my modem, phone calls and emails kept interrupting my train of thought, and refinance junk suddenly had to get done right then, and, well, MY list of things to do did not get done! 

Later, when I tried to focus on the list, my brain just shut down…like out-of-order, shut down. 

I used to be on top of EVERYTHING! I was the queen of orderliness and the go-to person for accomplishing a task.

Where is that person??????

I don’t want the label of “Fibromyalgia” to define me. What I mean by that is just because I have it doesn’t mean I don’t have a life. It is just not the life I used to have. 

Readjusting to the new me has been an on-going issue for me. 

Like today.

My brain is done. I am typing this because I need to vent a bit. If you are still reading this then I thank you for “listening”…

Only fellow chronic pain sufferers understand the battle we face. They call it brain fog, and that is how I feel. 

FoGgY.

This blog began to help me express how I feel and the battles I face daily as well as the mini-victories I receive each day. 

Today my brain was overloaded and it just shut down. By stopping to write, my hope is that my brain will re-boot itself so I can accomplish something on my list. Not for the lists sake, but because I have relatives arriving in two days, lesson plans to finish for our upcoming home school year and because my personality just desires a check on that stupid list!

Yes, I have Fibromyalgia. Some days I think it has me, too. But I understand that today is gonna have to be one of those days I cannot control.

It is what it is. 

That list will just have to sit here another day when my brain allows me to focus. 

Good thing it’s written on pretty paper, eh? Humor is good for the soul!

May your day be brain-fog free!

God Bless-

~The Fibro Momma of Ten

 

 

Living Daily with Chronic Invisible Illness

Loving Someone with Cancer When You Have Fibromyalgia

fibropage1

My husband has cancer of the bone marrow called Myelofibrosis. He has been receiving blood transfusions for over a year. He was receiving them about every 14-16 days until this past winter when his body began requiring them about every 9-12 days; 2 units each time. 

As a Fibromyalgia sufferer, I deal with the ups and downs of daily living and how it wreaks havoc on the Fibro body. 

Add the stress of a loved one’s illness and you can quadruple that effect.  

My husband has Myelofibrosis. In this, his red blood cells are affected. They do not mature and subsequently, he is chronically anemic. He also has Hemocromotosis, which is iron overload. In his scant few red blood cells he has, there are 1000x more iron than the average person has whose red cells are healthy. Strangely, these two conditions are rarely seen together. To treat the one, you get blood. To treat the other, you give blood.  He cannot give blood because his red blood cells don’t mature. When he receives blood, the influx of iron it brings can cause iron overload, but he needs the new red cells to keep on going or his body’s red blood cells would eventually cease. We don’t want that! 

Myelofibrosis is considered to be a chronic leukemia- a cancer that affects the blood-forming tissues in the body. Myelofibrosis belongs to a group of diseases called myeloproliferative disorders.-The Mayo Clinic

It has caused my husband’s spleen to enlarge and a host of other symptoms. He is taking two medications to keep the spleen down and another to combat the amount of iron his body receives with the transfusions. 

Those transfusions give him red blood cells which provide him with renewed energy to keep going, but the amount of iron they bring causes his Hemocromotosis to escalate. This is an on-going battle that is now (on average) every 10 days.

(In a healthy person, immature red blood cells mature, live a while and then die off. His never mature, hence the need for transfusions. As those transfusion cells die off, his count diminishes and he needs more blood to keep going. It is a vicious cycle.)

My husband is a champ. He still works daily. He still looks like a normal, healthy person. Like Fibromyalgia, Lupus, etc., it is dubbed an “Invisible Illness”-the kind where people don’t believe you are actually sick…

We have tried over the past 5 years living in a relatively “as normal as possible” state. That means keeping as much of our lives as regulated as possible and keeping our family life going, including our family’s Bluegrass Band, running smooth. 

I do my best to pace myself to keep the Fibromyalgia levelized. Is this possible? 

Seemingly, no… 

Every 10+ days I sit with my husband for 5 hours or so while he receives his 2 units of blood. We visit, play cards, think positive thoughts…but the sitting upright can have catastrophic effects on my Fibro body that lasts for days. (I am sure the stress of it all does not help. Throw in the pre-menopausal hormones I am now facing plus the raising of three children (out of ten) left at home children-all girls left-ages 10, 12 and 15. Hormones all around me!!!!)

My battle with chronic, daily pain is a part of life for me. Fibromyalgia won’t kill me (although some days I feel like it could!) 

What my husband has will kill him. I get through my life of pain so I can help him; help with our lives together. Those catastrophic days are nothing compared to what he deals with. I try to pace myself and be ready for whatever comes our way where his cancer is concerned.

The Lord has allowed me to have this condition so I would slow down my life to accommodate my husbands new slowed down life with cancer. I will take the pain…one day at a time!

The Lord’s GOT this!

Blessings-

~The Fibro Momma of Ten

 

Living Daily with Chronic Invisible Illness

Living in the Midwest with Fibromyalgia

fibropage1

I suffer from Fibromyalgia.

I have multiple days in a row where I seem to have more energy and I also have trouble sleeping.

Then, I have found the opposite to be true; days in succession where I am so fatigued I can barely function.

Whether I have energy or am fatigued, every single day I hurt somewhere.

Mostly joints and deep muscle aches; a burning sort of pain, sometimes sharp and stabbing.

Sometimes it is like I can feel the ligaments being pulled from the bone.

But on those fatigued days, the pain seems worse.

On the “I cannot sleep” days, I seem to suffer from Fibro brain fog issues.

I have charted this for over a year and can see a “rollercoaster ” type wave sweeping over my months.

Is it hormones?

Is it stress?

Is it from cleaning (like sweeping, scrubbing bathtubs, etc?)?

Is it the midwest weather where the temps fall and rise every other day this time of year causing the barometric pressure to wreak havoc on this Fibromyalgia body?

Does anyone else feel this way?

Today, my brain would not cooperate.

Tonight I can literally feel my joints begin to scream as I struggle to find sleep.

Today the high was 59 degrees. It will be 23 degrees when I wake up tomorrow.

Ah, Fibromyalgia!

You NEVER know what a day will bring to your body!

May your day bring you a clear mind and comfort in the pain.

God Bless-

The Fibro Momma of Ten

Fibromyalgia Family Life

My Crazy, Zany Life

fibropage1

October. My favorite month of the year. Fall decorations, changes in the weather, pumpkins, windy days with leaves floating overhead…and Fibromyalgia woven throughout each day.

Also this month, I have had a daughter birthday…music way upstate…another daughter birthday…canning green beans and hot pepper relish…another daughter birthday…a music contest…a day spent shopping for flooring…a daughter’s engagement…more music…major renovations on our house like laying subfloors and taking out walls….music…wedding planning…doctor appointment for me…hours and hours of my dachshund in labor (they never give birth during the day!)…another birthday coming up, complete with a party…more music…

Well, that about sums up my life since the first of October! (And that is not including homeschooling, grocery shopping, laundry, cooking meals…you know, regular, everyday life).

Where does the Fibromyalgia fit in??

Every-single-day-

Every moment of the day and all in varying forms.

Recently my body locked up from the neck down-which lasted about 30 minutes, making me feel like I was literally in cement-(which is the fourth episode of that this year).

Every day my joints scream at me…and most days it takes a lot for me to function (brain fog).

This renovation we are doing inspires my creative genius, giving me a drive to get it done, which, in my experience, makes me think that creativity is a form of natural “drug” to help (at least me) get through my life of pain.

But when the day is over and my body is tired, that pain seems to multiply and overtake me.

It is a roller-coaster ride of never-ending pain!

There may be days (especially gloomy, cold and wet ones) where all I desire to do is curl up with a blanket and do…nothing. However, my life is not conducive to doing nothing.

I must be all things to everyone in my life…

Some days I am a little slower.

Some days it does not all get done.

Some days drilling math facts, reviewing vocabulary and spelling words and reading out loud to my kiddos is all I can muster.

Some days I’m like the Little Engine that Could and I say to myself “I think I can…I think I can…I think I can…”

I have yet to hear myself say “I knew I could…” without the pain from what I did…

But, it is my life and I am thankful for it-pain or no pain.

No pain?

I wonder what that would be like??

Have a blessed day and be sure to be the reason those around you smile!

~The Fibro Momma of Ten

Fibromyalgia Family Life, Living Daily with Chronic Invisible Illness

Being Creative with Fibromyalgia

fibropage1

Having Fibromyalgia and being creative, like decorating a cake, is quite the challenge!

Today after our family Bible study and prayer time it was decided to spontaneously celebrate our daughter’s birthday, which is actually next weekend, but due to a music engagement we have way upstate, we will not be able to celebrate it on the actual day.

I suddenly found myself in full-speed mode as I set off to bake her cake.

(I have always decorated my children’s cakes for every birthday for each one since their first. This tradition I want to keep for as long as I can so they will always have happy birthday memories and the anticipation of “what theme this year, Mom??”)

I got to work making the homemade icing and began dying it the autumn colors for the scene I planned to do. An hour later and Viola! It was done! (And so were my hands, my shoulders, my feet…)

My daughter was quite pleased and knows how hard I struggle to decorate cakes now that I have been struck with Fibromyalgia. She also knows that asking me NOT to decorate the cake would be a useless conversation to have with me.

The dinner and cake were a hit! Currently I can hear waves and waves of raucous laughter from the living room as many of our older kiddos are still up and playing a board game. This Momma is exhausted but hearing the laughter is medicine to my soul!

I am blessed beyond measure!

Yes, I write this in pain. My shoulders are locking up and my fingers can scarcely type the keyboard.

Yes, my feet are throbbing 45 minutes after I have been resting.

Yes, every joint feels unhinged and the pains unleashed.

But you know what?

It was worth it to see the smile on my daughter’s face and the joy it brings me on the inside see it!

It is the little things we are to be thankful for.

Does the pain make me want to curl up in a ball and wish it away? Yes.

But I know that even if I stop, the pain will still be there.

The pain is always there.

Decorating cakes hurts me but being creative helps me. It’s a baffling paradox, but being creative helps me through the pain.

Sounds strange, I know, but it works for me.

So Happy Birthday to my sweet daughter! I am glad you liked your cake!!

God Bless-

~The Fibro Momma of Ten

Living Daily with Chronic Invisible Illness

Is Fibromyalgia Progressive?

fibropage1

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!

Happy January and God bless!

~The Fibro Momma of Ten

Fibromyalgia Pain

Fibromyalgia and Driving

fibropage1

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*

It’s just the way life is these days.

So, happy Saturday to you and gentle hugs!

The Fibro Momma of Ten

Living Daily with Chronic Invisible Illness

Fibromyalgia and Extreme Weather Changes Don’t Mix 

fibropage1

What is a major FIBRO day? Well, today is, of course! Why? Because today’s episode is due to a change in the weather. 

Rain, wind, and storms make for a very blustery fall day and it is what I awoke to today.

I knew what type of weather it was before my eyes opened. The pressure in my chest, the pain in my joints.  The overall amazingly sore muscles. It feels like you’ve got the flu…

Even your scalp hurts. You wiggle your toes and the pains shoot up to your knees. And Oh! Those knees! I should have known last night this was coming because my knees were screaming at me with every movement!

So, because of the 30 degree drop in 2.5 hours, you feel like all your bones have been dislocated. Like the scarecrow laying on the yellow brick road all in pieces…

Can anyone else relate?

Today is a MAJOR Fibro day! The kind when you want (someone else) to light a fire and allow you to curl up by it with a good book and rest.

Maybe your day will allow that! Maybe you have someone there with you who will give your body what it needs. Count your blessings if you do!

But, perhaps your alone. Just the idea of getting up to use the bathroom seems overwhelming, let alone make a fire! Ha! Once you pander down the hallway, just find a TVfire video and stream it! Turn the volume up and enjoy the crackily sounds.  Then curl up with a book! It might not be the same thing, but it may offer a way to bring some rest.

Who cooks on these sort of Fibro days?

This is where you plan on a good day to plan for a bad day.

Canned soups and saltines are an option…whether you live alone or not. It’s a good fall back and something to always keep on hand!

Just promise you’ll eat! Pain or not!

So here is to all my fellow Fibros…no matter what the weather is in your neck of the woods! Gentle hugs your way on this most stormy and blustery of autumn days yet!

 

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.”