Fibromyalgia Family Life

My Crazy, Zany Life

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

A Quiet Autumn Afternoon in Pain

I have Fibromyalgia. That dread condition where you hurt all over, all the time.

Today I find myself behind my computer with the Pride and Prejudice soundtrack playing and my grandson asleep next to me. Life is pretty good!

Today I have created Christmas cards online, paid bills and enjoyed lunch with my kiddos. My oldest daughter is over and that means my almost eleven month old grandson is here, too!!

It is my afternoon to babysit while all my daughters (there are 5 of them) go outside to prepare our barn for an upcoming wedding to be held here in January.

Yes, I said the words=wedding, barn and January-in the same sentence. And yes, I live in the Midwest.

The word snow is taboo around here until after the wedding.

And a lot of PRAYER is going up to the Lord for a pleasant weather wedding day. Cold is a given…heaters have been arranged for this blessed event!

Hold all comments, please. The young couple has this vision and it is up to us to see it come to fruition!

Back to my day…

My pain level is at about a 6-7, which is my everyday normal, with an occasional flare-up to a 9 or 10 sprinkled throughout my day.

Such is the life of a Fibro sufferer!

As I write this I can feel the burning pain in my back and spine, the electric zaps that pulse throughout my various body parts, and I am dreading getting out of this chair. The pain upon standing can be barely tolerable until the endorphins kick in…and then it only numbs it.

But as I sit and look down at this beautiful baby, all the pain sort of fades off a bit…if only for a moment.

This little corner of my house that has not been touched by drywall dust (we are remodeling) is my current sanctuary of peace.

May God Shine His Love on you today!

~The Fibro Momma of Ten

Fibromyalgia Family Life, Living Daily with Chronic Invisible Illness

Being Creative with Fibromyalgia

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

Fibromyalgia Family Life

Here Comes the Sun

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.
Fibromyalgia Family Life

Gardening with Fibromyalgia

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.

Have a good weekend!

Gentle hugs!

~The Fibro Momma of Ten

 

Fibromyalgia Family Life

Fibromyalgia Surprises

 

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!!)

Blessings-

~The Fibro Momma of Ten

Fibromyalgia Family Life

Fibromyalgia-When the family gets sick

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!

Happy New Year!

Fibromyalgia Family Life, Living Daily with Chronic Invisible Illness

Fibromyalgia Flare-up

What causes a Fibromyalgia flare up? That is something I have been trying to figure out for over 3 years now.

So, tonight at 8:30 p.m. my body decided to completely give out on me.

No advanced warning…no preview of coming attractions… just flat-out locked up and said “I’m done!”

I probably should have expected a flare to rear its ugly head about this time. I am learning how my body works and how it responds to different things that I do…and the past three days have been non-stop.

What does one do when “life” does not allow a person with Fibromyalgia to rest or take it slow as every article that a Fibro reads tells them to do?

Now, that is a daunting question.

This past weekend was very busy as our family plays bluegrass music and we had to travel over an hour and a half to play a music engagement. The playing part is fun! The drive, however, is not fun for this Fibro body. As I could have guessed, I crashed as soon as we all returned home and I tried to take it easy on Monday, but homeschooling has its demands!

Tuesday would have been fine except I had to drive over an hour and a half into the city to take my son to have a procedure done at the hospital. The procedure itself took only 15 minutes. However, the hour and a half prior to the appointment check-in, the hour delay that we sat waiting, and the extra hour after post-procedure was taxing on my body.

Of course, on the way back home I decided to make a couple of stops as I live out in the country and some stores were rather conveniently located to me at that time, so we stopped in for a few holiday odds and ends for the Thanksgiving meal table.

(This was probably not the best choice, but none-the-less, it is what I chose to do. I have found that it is these little spontaneous choices that wreak the most havoc on my body!)

It was rather fitting, when I woke Wednesday morning to find it raining. That alone can send a Fibro into a flare, and that certainly did not help what was about to take place in my body hours later. That “24-48 hour delayed reaction” thing that drives us Fibros out of our minds!

In our home-school, we are finishing up a Civil War unit study that will end with a puppet play of what the kiddos have learned as well as a home-cooked southern meal like they would have served during that time era. (The kiddos are cooking it themselves with me as overseer.) The play is to take place tomorrow so we had many fine-tunings that needed to be done today, including setting the beans to soak for the meal tomorrow.

Lots of fun! But, very busy!

As I was finishing up some of those odds and ends, my hips began to ache something fierce. Then they felt bruised. Then incredibly sensitive and my clothes actually hurt to wear.  My gums and teeth began to hurt. I now have a sore in my nose that won’t stop bothering me. Since I began to type this, my joints are locking up and typing is becoming cumbersome.

Yes, this is the beginning of a flare. A flare from my weekend, my trip to the city,  shopping and well, just living life!

How long will this flare last? Hopefully not too long. My last flare of this magnitude lasted 4 or 5 days. In one week it’ll be the day before Thanksgiving.  I will need all my strength to make the meal as lovely as my old self used to do. I admit I set that bar pretty high for myself. I love the holidays! I am the type who has their menu list, a list of all the items that need to be purchased to make the menu happen, the list of what I need to do on Monday, Tuesday, and Wednesday of Thanksgiving week. I have it all broken down to help me to remember what to do and how to do it.

Now, I have always been this way, but I have found that these lists currently help me to remember what to do. In my past life- meaning pre Fibromyalgia- that list was more of a guideline to help my children know what I was planning that day so we could all work together!

My children still get in there and help me, and I try to keep things light and cheerful. (We even play Christmas music while we do our Thanksgiving baking!) But, I am not that same person that I used to be as I have to stop and rest, or stop and sit, or just take a little break.

The homemade dinner rolls that I used to make from scratch and work and twist with my hands to make elaborately beautiful rosebud rolls would absolutely hurt me to the point that I couldn’t even brush my teeth that night if I went back to making those!

Little things like that I’ve had to simplify. So now I buy the orange bag of Frozen bread rolls that I set out on Thanksgiving morning and let rise all day and bake to a wonderful golden brown and serve! Most people don’t realize I didn’t bake them, but I know. I should be thankful that they’re available to me, right?

Of course, right!

So now I pray that the kiddos puppet play goes well tomorrow.  The meal too, which (will) consist of ham and beans, cornbread and molasses cookies all served on tin plates by candlelight in a (as close as possible) true Civil War-like way and that this Momma will not be recliner bound!

Homeschooling at its finest!

From one Fibro to another-Gentle Hugs and may all your holiday baking be easy on your body!

Fibromyalgia Family Life, Living Daily with Chronic Invisible Illness

Fibromyalgia and the Guilt Complex

You may have read on other blogs about how some people with Fibromyalgia lovingly tell friends and family that they cannot attend an event or host a gathering and bow-out “gracefully.” In this post I we will speak about the realities of the guilt involved by doing this and its repercussions on your health. There is no need for a guilt complex!

Fact: Life does not stop just because you have a chronic pain disorder.

This is true. Invitations still arrive in the mail (or on social media) and you still have to decide if it’s in your best interest to attend. You may even take into account the possibility that you might encounter certain people who could (perhaps; most assuredly) throw you into a flare…you know the ones. (I am sure someone just crossed your mind when you read that…)

Scenario #1: You RSVP with the full intention to go. You over-do it the day before and “Viola!” just like that, you have to cancel. Does the person hosting the event know about your condition and understand your need to cancel at the last-minute? Are they supportive? Or worse, do they even care??? Do you care if they care? Do you feel guilty about your decision? Maybe you decide to decline the invite from the beginning because you “just know” that you won’t feel up to it when the day arrives.

Scenario #2: You RSVP and the day arrives; you make yourself go. After all, you never go out. Your friends and family have made mention of their concern that you’ve become reclused. Are you going because you want to go or because you’re trying to convince others you’re not as bad as they think you are? Are you still in denial about your condition? Are you trying to convince yourself you’re not as bad as you think???

Scenario #3: You have accepted that this is the life the Lord has given to you. You understand that you have limitations and that pacing is vital to your health and outlook. You RSVP with the added note saying you will do your best to attend, but until the day of, you won’t know for sure. The day comes and your joints are super-achey, almost burning (is it raining??) and you decide to make an appearance to keep your own moral boosted. You see old friends and “that one person” whom you don’t let get to you (self-preservation). You go home and collapse, but have a decent memory to add to your collection.

Which scenario most fits your life?

Fact: Family is harder to handle than friends.

Why is this a fact? Because families have high expectations. They remember the you that you were and have a hard time (believing, dealing with) the fact that you have changed. Of course, no one asks to be in constant pain every moment of everyday. Change is inevitable. That is a fact.

Do family members understand when you must cancel? What about those certain family members whose lives seemingly revolve around themselves? An invite may be to come over just “because”….”You just have to come over and (help, be with) me!” “I know you have plans today (to rest because you need to rest), but I need you more.” Then you feel guilty. You think, maybe I am being selfish. He (or she) does need help with (whatever it is). It won’t hurt to go over there. Let’s not talk about how “over there” may mean a longer drive than you are physically able to achieve…and the after-effects will keep you down the next day.

Maybe it is not too far to travel. Maybe it is just going next door. But you know your body needs to rest…

Is that selfish? No. It is NOT being selfish. If you choose to not rest and go do whatever, where ever, then you must understand that it’ll be at a cost to you. A cost to your health. A cost to your pain. Is it worth it?

What about the invites that come from family for parties, showers or weddings? Are they as easy to dismiss?

Again, you can only do what you feel capable of doing. You cannot let guilt over take you. That, my friend will help you meet your demise.

Fact: It is hard to say “No.”

Yes, for many people this is a fact. I am one of them. I am a doer who likes to do. I am a cleaner who likes to clean. I am a gardener who likes to garden. I am a chef who likes to cook. I am a parent who likes to nurture. I am a teacher who likes to teach. I am a wife who likes to be one. I am….I am…I am…I am a person with Fibromyalgia. I still am all those persons above, only different. I am still me, only different. I have to say “No” now when before I always said “Yes!” I am my worst enemy and my only friend. Everyday is a battle. Saying “No” does not define me. It releases me. It allows me to become a better person with my condition. I cannot allow this new way of living to make me feel guilt.

Do you feel you can “bow-out” of an invitation gracefully? Why or why not? With understanding of your chronic health condition(s) comes freedom. You are not alone. You can fight this. You MUST fight this. Family will always be family. Friends will come and friends will go, but true friends see the pain in your eyes while you’re finding that lost smile of yesterday. You have one life to live. Do it by choosing your battles and pacing yourself. Don’t let the disease define you. Don’t let others make you feel guilty for saying “No.”

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If this post has blessed you, please share it with others! We Fibros need to stick together!