I was rereading the Spoon Theory in preparation for a Vlog I will be doing on it. I was prompted to do the video on it because my second mother just stumbled across it and had never heard it before! Silly me was just thinking all us sick people knew it and if I read it then those I love should psychically know it right?! Welcome to my brain!
So anyways, I will speak more on that and share the Vlog when I have the energy to explain I have no energy 🙂 hehe So, for some reason all this spoon talk prompted me to think, “Hey! I should right down all my symptoms as everyone has a different experience with fibromyalgia and I also have other conditions.” I throw symptoms out all willy nilly (yes, I just used that phrase) and I honestly expect everyone to know, again psychically, what I am going through. So, I open my Vlog diary to quickly write out my symptoms and begin to write……….*still writing*………….*still writing*……..O_o…….wtf?!………*come up for air* I mean GEESH!!! I haven’t really written it all out and sat and access it since I was diagnosed. It is staggering and sobering. No wonder I feel so frustrated when others don’t seem to understand how much effort something that is simple for “healthy” people to do. DANG!
I suggest you start at the top of your head and finish at your tippy toes and write all that you deal with including your brain! Sit back look at it and show your specialist, pain management doctor, or rhymotologist. If all doctors are sucking at being doctors aka doctors in Nc (minus a select few) then use it to access your own treatment. At the very least it was liberating. I cannot really explain it because it sounds like it would be depressing but it’s totally not. It’s the complete opposite. I could puff up my chest like yeah this is what I deal with so just try to say I’m lazy or faking or “you could totes work part time!”
I will share my list of symptoms (minus the stick figure diagram of myself) in hopes that someone will either learn more about the wide array of symptoms for fibro or feel not alone! It’s hard but hey we aren’t suffering alone and I love my readers and hope that in comradery y’all will list yours for yourself and if feeling brave share in the comments!
List of Symptoms
Occipital pain two points
Pain in eyes
Dry mouth wakes me up
Painful lips from picking
Trouble doing simple tasks
Trouble with speech
Pain down pack
Radiating pain down shoulders
Tightness in shoulder blades
Chest pain\rib cage
Full body widespread pain
Lower back pain
Pain in tailbone
Pain under buttocks (can’t sit)
Thigh tenderness and radiating pain
Knee radiating pain
Left knee injury
Severe menstrual pain
UTI symptoms\bladder pain
Full body pain
Feel like in a fog
Sensitivity to smells, tastes, noise, crowds, lights
I get overwhelmed easily
Wake up often
Can’t fall asleep
Can’t stay asleep
Flulike symptoms (feels like poison in my veins)
Primary and secondary insomnia
Sensitivity to medicines
Get sick or exhausted with exercise
Shortness of breath
And more unfortunately! Incredibly freeing! I hope that in comradery y’all will list yours for yourself and if feeling brave share in the comments and title it so we can see and invite your readers to join in!
Name your post “My list needs a list” and tag 1-5 people
So I am running out the door to church not a stitch of anything on my face. My lips are white and chapped so I pull out my beautiful makeup bag while driving (not safe don’t do this) to grab some simple Chapstick.
Really? First off where do I get off owning this many lip glosses/lipsticks? PS this is only my purse makeup bag haha. And second I pulled out gorgeous lipgloss and gorgeous lipstick. WHERE IS THE APPROVED NO MAKEUP CHAPSTICK?!? Deep breathing helps at this point. I did for a split second think ahhhhh just throw a light lip gloss on! Freaking WHAT?!? Then I picture Emilee Lowe’s brave cute face with no makeup holding me accountable and I keep rooting for the dang Chapstick. I have to say I’m proud I didn’t go with the lip gloss. It seems silly but to me it felt brave and empowering because no one could judge from anything but my God given face! Pretty cool in my opinion. But let me tell you a secret…..come closer….after 30 days….closer… Secrets psssttt… Closer…..I CANNOT WAIT TO WEAR MAKE UP!!!! Lol I just love it so much and the artistry of it haha. I am learning A LOT about my self and connecting in new ways with God. It’s like when you do a new exercise at the gym and the next day you feel sore muscles you didn’t even know existed, that’s how this challenge has been. Again a big thanks to Emilee I will link her down below please welcome her into the community as you all have me. I love you guys thanks goodness for technology so I have friends here! Fight on friends!
Oh how I dream of sleep! That is if I actually slept so that i could dream pleasant things! Such a simple act that we all do nightly right? I started off a “night owl” then an “all nighter” then an “OMG am I hallucinating?!”
I have three types of insomnia. Leave it to my body to have all the bases covered! I have a hard time falling asleep, difficulty staying asleep, wake frequently while sleeping and have difficulty getting back to sleep once awake. We have all gone without sleep right? College exams, sick all night, bad break up. Well for me it’s every night. I have never in my life slept a solid 8 hours.
Few people actually know real sleep deprivation. It’s not missing a few hours if sleep and needing ten cups of coffee and being grumpy the next day. It’s wanting to tear your eyes out, picturing the cartoon knock out classic move, and in my case hallucinating bats flying in my room and being convinced the sun is evil and trying to come through the fleeces I duck taped over my window. Although the sun is a tricky bugger I hardly think it is interested in me nor bats anywhere besides in my belfry!
I offer no remedies, although I have tried them all!! Just another delightful cherry on top of the craziness that is my brain. I wonder what I would be like after 8 hours of sleep? I picture super woman but maybe just still me without dark circles under my eyes 🙂
Lately, I have been struggling to express myself with describing my illness and pain. I get a lot of blank stares and awkward transitions on to another topic. I recently commented that my friends are either young and super active or older with health issues. Don’t get me wrong I love my friends but I do struggle between over sharing or not letting others know the real me.
Today I got to talk (all day actually) to my pain sistah from another Mistah. I actually felt relieved and not alone. She is young AND dealing with chronic pain. In this case yes misery does love company because, dang it, it’s lonely being miserable! We were finishing each others sentences practically and swapped war stories. We just laughed and could not believe how similar we are and our struggles.
God gave me this life and these struggles to share my story and to build fellowship. We are not meant to suffer alone. Loneliness is a choice because God created us to have unique connections with others. To share our sorrows is to lighten our burdens and in my case feel that I am not completely crazy because someone else goes through what I do! Don’t misunderstand I am a nut case and proud of it! God just makes me laugh sometimes. I complain no one my age deals with what I do wah wah wah like a little child and then God places it on someone’s heart to reach out to me. It’s like an annoyed farher finally giving in to a whiney child. I love my Father and that He puts up with me and when I am faithful he provides.
So today was spent in bed but not alone, instead, chatting to my pain soulmate about life, love and being so tired you want to punch yourself in the face. 🙂
Unlimited texting= 20$
Someone that understands exactly what you mean=Priceless!!