One Mom's Light-Hearted Approach to Feeling Miserable
All About Me
I am a home-schooling mother of ten with Fibromyalgia. My story started in the fall of 2014 when I began to have a lot of pain in my sides and back, at times so excruciating that it hurt to walk. After weeks of this discomfort, the pain began to branch off to other parts of my body.
I knew it was time to see our family practitioner because something was not right. Due to the side pains, tests were run on my kidneys as well as a spinal x-ray and CT scan. Nothing to speak of was found and I was told that if the pain continued, to come back in six more weeks.
Six weeks later I was still having pain. Another trip to the doctor proved beneficial. This time, she listened with kind ears, asked me more probing questions and then came over to me and began pressing various parts around my body, starting at the top. Oh. My. Word!! Some of those places made me cringe, some made me curl my toes and others made tears sting my eyes! She pressed on places I did not even know hurt until she touched them! While I was regaining my composer, she looked at me and stated very matter-of-factly, “You have Fibromyalgia.”
What is that…?
She went on to explain that she had just performed a tender-point assessment on my body, looking for painful spots at specific locations, which included being symmetrical on my body. She said I had all 18 and with my other symptoms and having had the pain for several months, concluded that I did indeed have Fibromyalgia. She told me to Google this condition to learn more about it and come back in a few months after I had time to digest this news.
By spring of 2015, I was in pain 100% of the time, albeit, on varying levels. I went back to the doctor for more intensive blood work thinking that there had to be some other answer, something easily cured. I could not believe that at age 46 that I was going to live like this for the rest of my life. Lyme disease was negative, Thyroid functions were fine, and I was not deficient in anything.
I was sent to a Rheumatologist. More blood work. More assessments. More waiting. I had other symptoms now, such as fatigue, nose and mouth ulcers, and rashes. I learned that my ANA levels were up. It seems the doctor is thinking I have Lupus AND Fibromyalgia!
I have never studied about something as much as I have with these two things! I have learned that things like weather changes, stress, monthly cycles, housework etc. can all wreak havoc on both of these conditions; the symptoms are so similar.
Then in the fall of 2017, a fourth testing was done on me which came back saying my ANA was still the same, but that the doctor was not thinking Lupus anymore. Well, after I praised the Lord quite a bit, I asked my doctor about all the pains, daily struggles, constant joint and muscle pain and immense fatigue. His answer…”You still suffer from Fibromyalgia.” Oh, yes-that dreaded word! I was secretly hoping all my other issues would just melt away…but at least for right now it is nothing else, right? RIGHT!
In January 2018, more testing was done. Have I mentioned that I have Psoriasis? That is a skin condition and I have had it as long as I can remember. With Fibromyalgia, all my joints ache so badly! I have been having trouble walking and my hips and joints feel as if they will fall off. Recently ordered X-rays have shown some deterioration in my pelvis, too. Since my RA Factor came back negative, it is looking like I may have Psoriatic Arthritis on top of the Fibromyalgia. Oh! Well, I am living my life daily, moment by moment, moving slowly, trying to exercise (!!!) and doing the best that I can.
So about my life…
I have been married to the love of my life for over 28 years. We went on to have 10 children-raising and homeschooling them- We also began a Family Bluegrass music ministry almost ten years ago. Currently five out of ten children are still living at home.
My husband still works full-time, but suffers from a type of bone marrow cancer- Myeloproliferative Neoplasm- which affects his red blood cell count causing him to be exhausted all the time. It looks like he will be having a bone marrow transplant within a year, which will be a whole other situation that the Lord will get us through! My husband’s illness is just a normal part of my daily life that I cannot ignore, no matter how I feel, and I always wake up feeling like I have been run over by some form of transportation before my feet even hit the floor!! (Some days a bicycle, others a freight train!)
When I rest, the pain tends to just crawl out of nowhere for those first few minutes causing excruciating pain as I try to relax my body. It gets better as my mind melts into a catatonic napping state for a few minutes, only to have every joint in my body scream at me upon awakening. It’s a vicious cycle. I continue to study up and learn about this never-ending battle with my body and do my best to live with this daily.
Things like cleaning the bathrooms, running the vacuum, cooking and tending to our nine acre homestead with chickens, hogs and horses, have pretty much been jobs our children have all been taught to do by my husband and me before we both became ill.
Now, I still love to do these things, but I will pay for it later when I can’t even walk up our basement steps, let alone drag myself into the shower! Once in the shower, it feels great, but the task of drying off seems daunting and I wonder if the bed looks more appealing! See, I am a doer who loves to “do.” I am also a planner who has always lived by schedules of my own making. (One would have to be very schedulized to raise all these kiddos efficiently, right??) Well, after 21+ years of home schooling and running the house like that, this Momma had to re-adjust her thinking. I had to make changes to my perfectionistic, go-get-’em personality. I had to look at the reality of my health and I had to learn to pace myself.
Let me tell you that is still a daily struggle with me! I love the feeling of a clean house, a weeded garden, and a made-from-scratch home-cooked meal! But this somewhat unrealistic personality trait now collides with my newfound limitations. Pacing myself is key, but goes against my chemical makeup. I have adjusted for the most part, but it is a moment by moment struggle at times.
I now have sun rashes causing me to wear sunscreen, sunglasses, a large brimmed hat and long sleeves outside, even in summer, and trying to avoid the hottest parts of the day.
I have begun getting migraines several times a month, which knock me out. Ibuprofen has become a friend on those days. I am not a big fan of medicine and I do not want to take anything if I don’t have to. I have chest pain and palpitations regularly-probably from the Fibro. I pray continually for it all to go away, but know there must be a reason for this affliction….I believe that this Blog is a part of that reason. By writing to you all, it is really helping me to reach out and let you know you are not alone.
I am proud to say that in the midst of all the struggles with my new self and the adjustments to my life I have had to make that we graduated three more children from our home school, one who went on to join the United States Navy, one who plans to study accounting in college while joining the United States Marine Corp Reserves and works at a bank, and our most recent son, who has joined the U.S. Marine Corp full time.
I have retired as the band manager of our family’s bluegrass music band, which has slowed down due to our son’s desires to serve our country. I am also the one responsible for the CD covers I created for the five CDs they all have put their hearts into over the years.
Before my illness, I would spend non-stop hours working on those covers with the drive to get it done!! However, after I got sick, I would allot no more than 2-one hour sessions per day, three days a week to work on them. By pacing like this, it enabled me to still cook dinner and be the mom and wife without feeling completely worn out. It took me longer, but with less wear and tear on my body. Some days I was worn out before I even began, so I had to listen to my body and rest. Computer work and I are not simpatico these days, you know?
For me, it is a constant battle with my old self and my new one. But each day that goes by and each new thing I read about Fibro helps me bit by bit to understand, accept, and fight this cruel condition.
Below are some pictures of our homestead which gives me a lot of comfort.