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I Just Want My People To Understand What My Everydays Are Like…

I’m not new here, but this is my first time expressing myself. I was first Dx w/ Fibromyalgia in 2013, I didn’t let it define me! I was hit hard in 2018 with #Gastroparesis . A few months later, Hypermobile Ehlers Danlos Syndrome (although I knew I had #hypermobileehlers-DanlosSyndrome(hEDS), I just didn’t know it was a disease… I was a gymnast childhood - early HS). Then came one diagnosis after another. Whammo!!! #POTS , #MCAS , Small Fiber Neuropathy, etc,. So from 2018-Present. I have 15 confirmed diagnosed chronic diseases. I have not driven in a little over 2 yrs b/c of POTS & fainting, & it really sucks!!
All of my local friends have gone. My college roommates (7) & I have a daily group chat going. Nobody (1 roommate does) ever checks in with me to see how I am. Everyday I’m completely #Fatigued . I have #ChronicPain everywhere!!! I’m #nauseous . I have #chronicdiarrhea & #chronicconstipation . I have #ChronicMigraines It hurts to walk. The rapid electric zaps from the #SFN is excruciatingly painful. My #RheumatoidArthritis & my #Osteoarthritis & now #Facetarthritis in my cervical spine has become so debilitating.

I don’t want to be a downer, but I would friends/family just to text & say "Hi, I was just thinking about you, I hope today is better than yesterday… remember I always love you!" This way they don’t have to ask how I am doing, thereby don’t get an answer full of negativity, but at least I know that I’m still in their thoughts!

I’m angry. I’m depressed. I’m sad. I’m lonely. I’m #housebound . I’m bored.

Being #chronicallyill totally sucks! Yeah, I’m having another #pityparty

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#mood #Badmood #stinkinthinkin #change #attitude #Selfpity

Boy!!!! Do I NEED to lighten up. Just bad #Pain day (#ChronicPain of #Fibromyalgia & a REALLY BAD headache SINCE I got up THIS morning !!! Maybe the physical,pain in my temples is affecting my brain & thus my thinking !!!lol But no, this #Bs . #pityparty of mine is ending soon as #Possible . I've made up my #mind - this here where I'm at STINKS & "I'm outta here"!!! Hahaha -but seriously. This is not like me. No - & as Joyce Meyer says "You can be "pitiful" or "powerful" , but you CANT be BOTH"!!!"


Oh there goes another joint #Hypermobility

When you hear that pop or feel the pins and needles. You know a joint has partially dislocated or dislocated. I wonder how much physical pain the body can take. You force yourself out of bed, then to try and do as much as u can, to try and go about a "normal" day. Has it got so bad that day u admit defeat? When mentally u can't bare resting anymore, but you could run the risk of causing more pain by not resting! Today I woke up and my left shoulder had partially popped for the first time, causing crazy pins and needles and horrific pain down my entire arm and shoulder socket. Does anyone else understand when I say I can feel my bones in my joints aching. Currently I have right shoulder screwed in place 5 years ago, unfortunately I'll be needing a second surgery, couple of ligaments holding my ankle together r torn since 14 months ago (just found out 3 weeks ago and was never put in boot or cast) I go over on my ankle 4-20 times a day and my jaw point is damaged on one side so waiting to hear wot Drs want to do with that, all because of hyper mobility! So I use physio take and a shit load of it, slings and braces, i also go to physio every 2 weeks (obvs not now cos of covid 19)Anyone out there got any thoughts on wot helps them get through a really bad pain day? Today I had a party it was the pity party, I drank coke had ice cream and cried lol! #bodypopping #Pain #ChronicPain #ComplexRegionalPainSyndrome #cantforgetbipolar #pityparty #humour #inmydarktimes


Getting sick...

I’d really love it if once in a while, #gettingsick didn’t involve some long drawn out process of #Pain and generally feeling #miserable for days to weeks. Like can I just once catch a 24 hour bug where you get sick and start feeling better right away? Why does it always have to be some complicated superbug that just leaves me feeling awful for weeks? Why do we have to work for months and years to get a few days or weeks where our chronic illnesses aren’t the first thing we think about every day? I don’t like this time imbalance #whining #pityparty #ihadabaddayagain

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