Confessions of a fatigued fibromite.

What have you done due to fatigue?

I was posting things I have done because of fatigue/”fibro fog”. After sharing my stories others began to share theirs. I saw myself in everyone of their stories. I know it makes me feel better to know that I am not alone.

MY CONFESSIONS

I stood in front of my office door pushing the button on my key wondering why it was not opening my door. It took longer than I care to admit for me to realize that I had been clicking my car remote door opener.

I told my daughter to meet me at the bank. I got there and texted her telling her that I was there waiting for her. She called asking where I was. She had gone to a different bank in town. I was positive that she was at the wrong bank. In fact, she even drove over to the bank I was at meanwhile I had told the lady at the bank that my daughter was late because she had gone to the wrong bank. She arrived and we handed the teller the information for her to make the deposit. You guessed it. She didn’t have an account there. She had been at the right bank but the good kid she is instead of arguing with me or saying something about my memory we just drove over to the correct bank did our banking and went about our day.

CONFESSIONS OF OTHER FATIGUED FIBROMITES

“I sprayed hairspray under both arms before realizing that it was not deodorant.”

“I put milk in the cabinet & cereal in the refrigerator.”

“I fall asleep in the shower.”

“I had to stop putting my socks on standing up. My balance has gotten really bad, but it’s mostly because I put my shoes on next, like auto pilot. Know where this is going? Socks, shoes, pants! Then I would fall over because my foot would foot would get stuck in my pants leg because I had already put my shoes on.”

“I arrived at doc appointments at wrong docs and times. But it’s rare. Once, I went for yearly check up and had absolutely no memory of having ever been there or seen the staff before but they knew me. Freaked me out because my father has advanced dementia. It never came to me. Still don’t remember them. I walked in office saying, did you move?”

“I drove to the wrong city for 1 of my medical appointments! I was about 1 hour farther out than I needed to be at their main location. Now I can’t even drive myself anymore…who knows what would happen…I would for sure fall asleep at the wheel before I made it!”

“My big one is getting home from the grocery store, and I’m so wiped out sometimes that my mind blanks on one of the bags, so something doesn’t end up in the fridge or freezer that should have. I hate when I do that!”

“I went to a hair appointment Tues. when it was actually not till Thurs.”

“I tried to put the milk in the kitchen cabinet one day. The only reason I didn’t is because it wouldn’t fit.”

“A couple weeks ago, I was sitting in the car, that I’ve had since 2013, waiting for my husband. He came back to the car to tell me something and I had no clue how to roll the window down or open the door. I sat and played with the locks, until I found the handle…lol Yes, funny, yet scary!”

“I have no more drinking glasses left. I broke them all. I would just randomly drop them. Plastic is the new glass in my household.”

“Personally I like fibro pregnancy brain duo. lol I put everything in the freezer or wrong cabinets.”

“Drove my preteen daughter to the wrong school for morning drop off….! Luckily she noticed! Haha!”

“I put my phone and umbrella in the fridge one morning.”

I have been struggling with fatigue more than usual these past few months. I will end this blog by sharing that when I began to proof read the above article it appeared to be longer than I had remembered. I found out why. I had posted each of the stories 2-3 times.

Share your stories in the comment box below.

“Wishing you sun~filled days & rest~filled nights”

What is a Fibromyalgia Flare?

A common definition for a fibromyalgia flare (or flare-up) is a temporary increase in the number and/or intensity of symptoms. Generally, the flare begins with pain and fatigue that generally increases with time. Other symptoms one can experience are “fibro fog” (cognitive dysfunction), digestive issues, and poor sleep.

Doesn’t sound too bad does it?

I do not know if someone who has never experienced a flare will ever understand a it no matter how it has been described to them. It is one of those things that you have to experience in order to truly understand how badly it feels. However, I am going to try.

First, I want you to understand that those of us with fibromyalgia are like snowflakes. We do not develop fibromyalgia the same way, have the same comorbid diagnoses(“evil-sidekicks”), or are able to treat our symptoms/conditions in the same way.

I will describe what a “normal” day feels like for me. I wake up still tired after 9-10 hours of being in bed(never feeling refreshed), experiencing body stiffness, pain, and tenderness in various parts of my body. I take my morning medicine, and within an hour (using a scale of 1-10), my pain is a 2 or 3.

I work 7 hours a day as an ELL paraprofessional. I work with children that English is their 2nd language. The great thing about my job besides the kids, is that I sit and walk all day long. It is a great mix of resting and moving my body, which keeps my pain and stiffness levels low. Once I get home, I lie down on the couch, and I take an hour nap, so that I can get through the rest of the day. As the night progresses, the fatigue and pain increase.

How does it feel for me to be in a “flare up”? I have been sitting here trying for a very long time to find the right words so that you will understand.
“Normal” fibro pain feels like you have the aches when you have the flu.

Good days feel as though when someone or your clothing touch you, it feels like the worst sunburn that you have ever experienced. My pain during a flare is beyond a 10. My arms and hands feel like the nerves are pushing to jump out of my skin.

The pain during a flare is indescribable. Along with the aches in my joints, my myofascial pain syndrome kicks into overdrive. The sharp pain feels like I am being stabbed repeatedly by a very sharp knife. My leg not only feels like growing pains, but sharp pains that start at my lower back, go straight down the sciatica nerve, through arthritis in my knee and down to my foot.

I sleep even less than normal. Every few hours I have to get fresh ice packs, medication, topical lotion, and heating pads. Anyone who experiences this kind of pain and exhaustion, knows how emotional you become after dealing with it for any length of time. Then, it is like a barrage of emotions, and I am a mess! There is E-X-T-R-E-M-E anxiety because I feel so out of control, as well as sadness, fear, and guilt, to name a few.

There is never any rhyme or reason. It could be the first day of a flare, or after I have been dealing with it for days. I am so overwhelmed by the pain and fatigue, that my thoughts become muddled. Then, my tears start. My uncontrollable tears.

Stress and emotion increase the pain levels, and unless you can break it, the flare can last for days. It becomes a vicious cycle. I know what I need to do to break a flare cycle. I coach others in what they should do, but during the moment that I am in, I can not process what I need to do.

I can remember a few years back when my flares would last for up to a week at a time, and I was experiencing one or a more a month. I was driving home from my job, because I could no longer stay at work that day. I had been in a severe flare for a week and I wanted it to be over. I prayed all the way home that a semi-truck would hit my car. I know that isn’t a healthy way to think, but when you are in that amount of pain and fatigue for days, or even weeks, you can no longer think clearly.

I am unable to do things that need to be done at home. I feel like a failure as a mother and a wife when I am in a flare. I can’t seem to do anything other than cry or slip into a deep solitude. I need tremendous support to reach out to my friends at this time, but yet I seem to push everyone away and enter into my own darkness.

Last week, my daughter had friends over 2 nights in a row to study for tests. My bedtime is usually 8:30 – 9:00. The kids were here until 10:30 and I felt that I shouldn’t have gone to bed until after they have left. The less the sleep, frustration over a schedule that keeps changing, and the weather changes sent me very quickly into a flare. I woke up this past Friday and knew. The pain increased as the day went on. The tears started, and I had to come home from work 2 hours early. I came home took some meds and immediately fell asleep on the couch for a 2 hour nap. Today is Sunday. I am still recovering but the worst of it is over.

I have been very lucky that since I changed jobs 3 years ago, the amount of flares that I have dealt with have decreased immensely, and the duration of them are now very short.

Before I started writing this blog, I asked my friends how they describe “Fibro Flares.” I wanted the reader to hear how others describe it to their family and friends. Here are some of the reasons that I received:

“Pummeled by pain,” “tumbled in the dryer,” “awful just f’n awful,” “like I have the flu permanently, and I lost an MMA match,” “a good day is like the flu and a bad day is like my bones are breaking and I’m being beaten by a bat,” “at the start I use to say I felt like my muscles were being eaten away (like extreme lactic acid buildup) I would say like you’ve been hit by a train and nothing relieves anything!” “like I was thrown off a cliff,” “nerves on fire,” “joints frozen,” ”flu type body aches is a good way to explain it to non-fibro folks,” “I think it’s the only way they can come close to getting it without becoming severely injured,” “sneaky, devious, invasive and miserable F’rs👹😈😭!!” and “feels like every nerve ending in my body is on fire.”

If one person reading this understands enough to offer empathy and help to their friend or family member during a flare up, then the mind struggle writing this blog has been worth it.

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