i have fibromyalgia. ok. i have a denial that i have fibromyalgia. my body knows i have fibromyalgia. my bones and muscles remind me (right now they are screaming at me) that i have fibro, but my brain -due to the brain fog that accompanies fibro - lets me forget that i have fibro and go on my merry little way and pretend that i don't have it. and so i keep repeating the same dumb mistakes over and over and over.
WARNING: this journal entry will be one of three things. either very entertaining to look back on and see just how dumb i can really get! . . . and i forget the other two. oh! or very boring to read (or hard to follow!) because it will give the reader a "real" view into how my mind works when this sweet little invisible disease / illness / trial plays havoc with my body. it's a peach of a trial i tell ya! or three, will give someone a glimpse on what living with fibromyalgia is like.
one thing when fibromyalgia gets going is that the less sleep i get the worse i feel. one problem - i also have insomnia; because of the fibromyalgia. another part of fibromyalgia that most of us have is chronic fatigue. chronic meaning it. never. goes. away. ever. nope! ever. this is a chronic illness. sometimes it goes into remission, but it is always lurking like a dirty little kid waiting to wipe boogers on your nice clothes right before you go out on a date . you just wait for it because you know eventually it will come. that kind of remission. that kind of chronic. that kind of illness. wait. not a booger illness! one that sneaks up on you illness right when you thought you would get to go do something fun kind of illness. that kind of illness. yeah. i'd rather have the boogers too. . . and the dirty little kid. . . if i had the energy.
the hardest part about writing this post? remembering what i wanted to write. and sitting here. i'm going to be quite frank so you can understand those that you might know with this. you have been warned.
i cooked dinner for "a lot" (because i'm too dumb to count them today and actually get a number) of people yesterday. i made 17 loaves of bread and 3 kinds of soup. yes. really. and it was delicious, thank you. squirrel! . . . ummmm... and people messed up my house. but that's ok. they left and now it's quiet. (yes this is really my brain. now you get it. I'll focus now. and erase and edit. and i really thought squirrel!) i personally liked stealing the fruit-by-the-foot with the grand kids and eating it in spite of dinner. smile.
so my plan was to go to sleep early after such a big and busy day. body was willing. brain said nope. and then to sleep in. nope again. seems lately i have what i refer to as "double-insomnia". it's hitting me on both sides. i'm burning the candle at both ends but doing it not by choice. and my candle isn't very big. i know when that candle is gone then i'm in bed for a few days. (again, not by choice) and i can feel it in my body. but my body fights me anyway. i got about six hours of sleep. at least i didn't have to get up to pee. that's a plus.
i decided that since my body wanted to sleep but my brain was on party mode that i would get in the jacuzzi tub and let my body at least relax after that big weekend. what really happened is that i texted, called and talked to many people and planned things for saras wedding so much that my water went cold and my skin turned into a prune. . . and i got out of the tub 3 times to answer the phone and go check the door to see if i really did miss the u.p.s. man. i did. . . yes i forgot to wear my robe. you're welcome neighbors. sorry. brain-fog.
after 2 hours of this one would think i would get out of the tub, right? nope. i had to get back in - that's how i know the water was cold - colder than running through the house in my nakeys and peeking out the door! - because i forgot to actually wash my hair and body. whoops. (one would think that i could have gotten in the shower and made it quick. i was too tired for a shower.) by the time i got out, three hours had elapsed and i was no closer to actually doing anything today than when i had rolled out of bed except that i now had to pee because i was so waterlogged from floating in the tub all morning.
one of the phone calls included a call to my oldest daughter. we planned an outing to gardner village to go see the witches and put money down on the reception center, a trip to the bank and to take her to the eye doctor. yes, this information is important to the story. yes, its a long story. i am a story teller. my brain is broken today. i am humored by my broken brain on days like this. no one else is, least of all my ever patient / impatient-with-stories husband. . . which might be why i was in the tub so long. he was trying to get information from me. but i digress. . .
as the time came to leave, i still hadn't called my daughter back. she finally called me to see what was taking so long. in all honesty - i couldn't get dressed. i was pretty much standing there in my underwear- by now just looking at my clothes, wishing that my favorite levis were clean. i told her that i needed a mom today - and here is why i love my daughter. . . a direct quote from her. "mom, pull your levis out of the dirty clothes and put them on, put on a white t-shirt and tennis shoes and come to lunch". so i did. . . and then i got behind the wheel of my car and drove it. yikes! thankfully that is a right-brain activity. . .
in the end we decided that we both wanted to be lazy. we brought lunch up to my house so the kids could run around and dump theirs on the floor while we ate ours. we didn't do anything we had set out to do except eat at cafe rio. . . and get dressed. that was nice and fit in well with my energy levels today.
for the normal person that would take what? 1 hour? 2 tops? it took me until 6pm. and i'm exhausted. but i'm too tired to sleep. which is why i'm writing this. in my dirty levis. with my feet wrapped in a blanket because they are freezing but i'm about ready to take off my shirt because the top of me is sweating. my back hurts, my shoulders are tight and i feel like i have the flu all. the. time. not just for a day or a week like normal people do when you get the flu. i feel like that everyday. i have another pounding migraine, and i usually have some sort of headache 9 out of 10 days. and they are usually migraine headaches.i sleep on a heating pad every night. even in the summer. i'm tired of hurting, so i just ignore the fact that i hurt. i have to. if i think about it, then my body acts like a squeaky wheel and different places in my body compete for attention on what area hurts the most. so if i ignore it, i can deal. if i ignore it, i can function. but don't confuse ignoring pain with my awareness of my body. i am very aware of my body and what is "right" and what is "wrong" for me. i've been on this medical roller coaster for too many years. i know more than my doctor and neurologist. i tell them what tests and medicines i would like to try and they help me. most seasoned invisible illness sufferers are the same.
i have learned to function at a high pain tolerance level. i find that i don't complain about hurting until the pain levels reach about a 6-7. usually that's when normal people head into the emergency room. for me, that's when i stop ignoring the pain signals.
hopefully this will help someone someday. i hope that it will help you understand what people with an invisible illness go through on a daily basis. this is a . . . very . . . "mild" post. i am one of the lucky ones. i can move. i can function. i can get out of bed. i can fight. there are many who can not. there are many who don't have my support system. there are many who can't afford the medicines that it takes to make it through the day. (I didn't even touch on that subject! for your information i take at least 31 pills every day. that's on a good day. if i have a migraine it could add another 8 to 12 pills, and if my asthma flairs also then add in the inhalers too.) sad huh. and i'm a healthy fibromyalgia sufferer. there's an oxymoron for you.
we call fibromyalgia, or lupus, or chronic fatigue, or multiple sclerosis or depression or bi-polar and many others "invisible illnesses" because they are illnesses that people have with symptoms that you can't see, so you don't think of us as "sick". if i have a broken leg, people see that broken leg and are willing to help. if i walk with a cane, or am blind, or have an animal companion people see that and are compassionate. humanity is not so compassionate with invisible illness. they think we are fake or hypochondriacs. so we do the next best thing. we fake being well. and we do a dang good job of it. did you read that? we don't fake sickness. WE FAKE BEING WELL. wow. my brain caught that one. that brought tears to my eyes. that's hard to admit. wow.so if you know someone who has an invisible illness be kind. be understanding. they don't want your pity. they don't want your "medical expertise". ( some of our doctors don't even know as much about our conditions as we do. ) they don't need you to tell them that you understand what they feel like because you had the flu too. (trust me. you haven't had this). they just want you to not get mad when they cancel plans again, or seem forgetful, or have to only do one thing a day. sometimes we have to take care of us. truth is, we spend a lot of our time - too much of our time probably - taking care of everyone else but ourselves until we just cant go anymore. and then we just cant go any more.
a "good nights sleep" doesn't "fix it" for us. we don't have them. we wake up exhausted. sometimes too exhausted to even get out of bed to eat. sometimes we have to make the choice to eat or get dressed because we don't have the energy to do both. sometimes we are so exhausted from taking a shower that we have to go back to bed and rest. it's crazy. i hate it. but i cope. sometimes i cry to cope. a lot of the time i choose to pray. it helps.
just please understand that our "normal" isn't your normal. and whatever you do, don't think us as weak. we are some of the strongest people i know of. we are warriors. we fight every. single. day.
if you are reading this and suffer from an invisible illness, i have a lot of pins on my pinterest page. maybe they will help you. here's my link to my page.
http://www.fibromyalgia-fitness.com/
they have a lot of information and good ideas there.
i find in the scriptures there are many stories, examples and advice on things that i can do to make my life better not only for myself but for others around me. it helps me to get past me. its good to have another focus besides myself. it also helps with the strength. i find that on the days i read my scriptures my actual physical and mental strength increases. when i don't read i don't have a lot of physical or mental strength. its odd, but i've experimented. there is a correlation. it's not a coincidence. i've done the experiment too many times. there is strength in reading scripture.finally service. it gets me out of my funks. even on stay in bed days. notes to people can be sent in the mail, or email. it's never a bad thing to make people feel good. on good days you can make 17 loaves of bread and feed it to people you don't know very well. i did. it feels good to do good things for other people. and it makes me realize that what i am experiencing might be hard but i am glad that i don't have other people's trials. i am thankful for my trials. they help me be a better person. they help me to be more compassionate and they help me to serve better. i love service. its the best thing to do on a pity-party day. it always works.
so that's my day today. it's one story of one day of fibromyalgia. it's not the medical terms, or what happens in our bodies, or why we get it and others don't. but it might just give you an idea into the brain of someone that has it.
i apologize for the lack of editing on my part in this post. i know there are a lot of errors journalism wise, but my brain is struggling to complete this post tonight, and my eyes are seeing double and triple so it's getting harder to write. this post is my accomplishment today. it too has taken me three hours. not because of a lot of re-writes, or editing, or even leaving the computer to do other things. fibromyalgia steals energy. fibromyalgia hijacks my brain and my body. on the inside i know what i want to do and say, but on the outside that is not what always happens or gets said. so my apologies -to myself mostly - if this is hard to read, and to others should you be interested enough to read this far, like i said before. . .
i am not a weak person.
i am a warrior.
i fight every single day.
update:
this is what the "morning after" - read 12:15pm and i'm still in my pajamas and i'm going back to bed in just a minute - looks like after the past weekend and not being able to rest last night. i smiled because it was a picture. but look at the eyes. and the red in the skin. this hidden in plain view illness isn't for the weak at heart. no illness is. May you all have a wonderful day and do something nice for someone today.
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