Tag: fibromyalgia

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We’re only a third of the way through the month…

JoLeave a comment

Hi All! In honor of it being Fibro Awareness month, I felt like laying some facts about fibromyalgia and gaslighting. More common than you think and even the smart ones fall for our brains tricks.

First off, fibromyalgia is like the ninja of chronic illnesses—it’s stealthy, it’s everywhere, and it hits you when you out of the blue. One day you’re fine, and the next, you feel like you’ve been hit by a truck made of exhaustion and pain.

Oh, and let’s talk about the diagnosis game. Picture yourself as a contestant on a really crappy game show where the prize is knowing why your body hates you. Your doctor throws every test in the book at you, from blood work to MRIs, all while you’re sitting there thinking, “Can we speed this up? My body feels like it’s been through a wood chipper.” Every new med comes with a side effect that you have to chase with another pill, its a cycle.

And here’s a fun fact: fibromyalgia isn’t just about pain. Nope, it’s a whole package deal. You get fatigue that makes you feel like you’ve run a marathon on zero sleep, brain fog descends to wreak havoc, and sleep problems that make you envy a cat’s ability to nap anywhere, anytime.

But wait, there’s more! Fibromyalgia loves company. It’s best buds with conditions like irritable bowel syndrome (IBS), migraines, and depression, because why deal with one pain in the butt when you can have a whole party of them?

Picture this: you’re dealing with this condition called fibromyalgia, where you’re in pain all over, tired as hell, and your brain feels like it’s stuck in a fog. But here’s the kicker: there’s no fancy test that says, “Yep, you’ve got fibromyalgia!” So, you’re left playing a guessing game with your doctor, ruling out everything else under the sun.

Now, imagine dealing with all that uncertainty. You start wondering, “Am I just making this up? Is my body punking me?” Do you know how many times in a day I try and tell myself that I don’t hurt? It’s like gaslighting yourself—convincing yourself that maybe the pain is all in your head because there’s no lab result to back it up.

And let’s not forget the joy of visiting the doctor’s office. You pour your heart out about how much you hurt, how tired you are, and how your brain feels like it’s on vacation. You bring witnesses, you show how you’ve logged all the symptoms. But instead of a pat on the back, you get a shrug and a “Well, your tests look fine.” or ‘Well that’s a common symptom of Fibro’

So, yeah, it’s a real treat trying to convince yourself and others that what you’re going through is legit when there’s no shiny test result to prove it. Its why they call it an invisible illness. But fibromyalgia is as real as it gets, even if the medical world hasn’t quite caught up yet.
Thats it for tonight guys, take care of yourself and each other

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Fibromyalgia, Bipolar, and me…

JoLeave a comment

Hi Guys!
I’m actually writing this out before hand because my endless streams of consciousness get confusing and I wanted to give you all some facts with your funny today (or MY funny, I’m not going to presume to know how you feel about things). As I’ve talked about in detail, I suffer from both Bipolar and Fibro among some other alphabet disorders and such. Part of the challenge when you suffer from multiple illnesses is difficulty TREATING the illness has a whole because you are so busy trying to battle symptoms
Ah, the overlap symptoms, where Fibromyalgia and Bipolar Disorder play their favorite game of “Fibro, flare, bipolar or unidentifiable illness?” Let’s dive into this delightful pool of confusion, shall we?

  • Fatigue Fiesta: Is it the fibro fog or the bipolar brain drain? Who knows! One day you’re bouncing off the walls with energy, the next you’re contemplating the physics of whether it’s possible to sleep while standing up. I’m talented enough to get both in the same day. I know, don’t be jealous lol Why choose between chronic fatigue and mood-induced exhaustion when you can have both, right? When you are dealing with this fatigue, it touches so many other parts of your life, and being tired all the time ruins your quality of life.
  • Pain Parade: Is it fibro spreading its discomfort like peanut butter on toast, or just your bipolar mood swings throwing a tantrum in the form of physical agony? Who needs targeted discomfort when you’ve got a buffet of sensations to keep you guessing? Every new ache becomes a game of medical Clue: “Was it Colonel Fibro in the living room with the pain stick, or Professor Bipolar in the kitchen with the mood swing?” It’s like living in a mystery novel, except the plot twists are your own nerve endings.
  • Gaslighting: Oh, don’t even get me started. Before you can say “It’s all in your head,” we’ve already played that mind game with ourselves a hundred times over. And when someone finally agrees with the doubts we’ve been wrestling with, it’s like a twisted validation that only makes things worse.
  • Take my cardiac arrest saga, for example. My heart decided to play hopscotch with its rhythm, and each fluttery beat had me convinced it was just another fibro flare-up. So, I shrugged it off, attributing it to the usual suspects. Turns out, it was a serious problem hiding in plain sight, but hey, who needs hindsight when you’ve got a PhD in self-gaslighting, right?
  • So, here’s to the dangers of doubting your own symptoms and the perils of playing doctor with Dr. Google. Because when it comes to your health, it’s better to be safe than sorry – even if it means admitting that sometimes, you don’t have all the answers.
  • Sleepless Slumber Party: Can’t sleep? Welcome to the club! With both fibro and bipolar on the guest list, your nights are a delightful mix of tossing, turning, and contemplating the meaning of life at 3 AM. Is it the fibro’s fault for making your bed feel like a bed of nails, or is it the bipolar’s insistence on turning your brain into a 24/7 circus of thoughts? Sleep is overrated anyway, right? That’s why sticking to a routine is essential. I sleep ok finally, but I had to change a lot, I’m in bed by 9pm 90% of the time because I changed my routine to what fit me best. For the life of me I CANNOT sleep past 4 am so I have to adjust my bedtime accordingly. As I said, listen to the natural rhythm of your body as much as you can
  • Mood Swing Shindig: Ah, the pièce de résistance of symptom overlap! One minute you’re as giddy as a kid in a candy store, the next you’re contemplating whether it’s socially acceptable to cry into your cereal. Is it the fibro fog clouding your emotions, or is it the bipolar rollercoaster taking you on a wild ride through the valleys of despair and the peaks of mania? Who needs emotional stability when you can have a mood swing buffet? Being in a mixed episode for a prolonged period of time, I can’t hold on to the ride and bouncing between the highs and lows is leaving me bruised and bewildered
  • So, dear patient, welcome to the wonderful world where fibro and bipolar team up to keep you guessing and your doctors scratching their heads. Who needs clarity when you can have a medical mystery novel written by the masters of chaos themselves? Enjoy the ride!

Be kind to yourselves, and each other!

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Ok, one of these things has to stop

JoLeave a comment

Ok, it was fun for a minute. It was. I love when I first start being manic, especially after a long depression. I even like it at the beginning of the mixed episodes, its always helpful to get the bursts of energy and inspiration, but see, that’s generally as far as it gets me. I have used every single one of my spoons this week, hand washed them and used them again faster than I could restock them. I have started a lot of projects, I’ve even finished a few (case in point this website, go me!) but I’m just so wiped out!
But my brain is like’ ‘yeah sleep is cool and all but have you ever thought about having an existential crisis? Like for real, whats its all for?’

I don’t know damn it but I don’t think its a 2 am never sleep again problem.

‘Well it is now bitch, enjoy!’



Then today, I had a big thing planned that I wanted to get done. Do you want to know what got done? I went to feed my cat, before I got all invested in a new project. Opened the closet door and couldn’t remember what I went in there for so on autopilot because I can’t sit still I ripped out my dresser drawers and dumped everything. I rolled up all my underwear in one drawer, my bras into another, then the third I allocated to tank tops.

Side note, serious question, what do you guys put in drawers and what gets hung up? This is the third combo I have tried, I don’t wear socks often so I don’t have a lot of them so they aren’t getting their own drawer. Everything else gets hung up or folded and put on a shelf because I like everything out in the open so I can see whats clean, also sometimes if I don’t see it I forget I have it so I end up buying more of something.

So now, that’s clean why am I complaining? Well because I didn’t get what was originally on the agenda finished, or even started, because once I went off on the adventure of cleaning and rearranging it was a train that could not be stopped.

Then, it happened. I looked up and I was sitting in the middle of my closet, my bed was covered, the floor had piles of clothing I’d carefully picked up and folded, or was in a pile to put on a hanger, everything was going great and I was finding a home for everything and then that’s when I realized, I was just DONE. Like I thought I could seriously pass out right when I was because I had lost all my spoons! Like I started today with a deficit of spoons, which was why I’d planned to do other things, things that didn’t require me to go anywhere or do anything. I have hurt myself a number of ways this week, I just wanted to rest and let my body take a breath.

But it was not meant to be, I was mid-mess! So I finished up, not even going to lie, I didn’t go to autopilot but I certainly did a half assed job of it just to be done with it, which just means now I’ll have to redo it and now my closet IS really messy, because all I could do was throw those stacks of clothes right in there and shut the door, I am leaving it for future me to deal with but the overwhelming exhaustion snuck up on me and ambushed me. I know you can’t tell, but I’m very disappointed in myself.

So mania, I love you, I do, you are a fixture of my soul and I wouldn’t be me without you, but could you PLEASE, PLEASE take a small little rest, not a lot because I’d miss you but a little weekend off so I could finish, like, even just ONE of the projects I started I would be ever so grateful. Or, and follow me on this one, maybe my fibro could ease up for FIVE DAMN MINUTES, then me and my mania could go full out flip the house upside down and inside out and clean everything there is to clean? I would take either/or. In fact how about we turn the pain and exhaustion down to like a seven? I think I could get things done at a seven, ideally it would be a zero or one but you know, begging and choosing and all that. So more content is coming, engaging and thought provoking content, I hope anyway, until then if you need me I’ll be wide awake staring at the ceiling or curled into the fetal position into another mess of my own making lol. Be kind to yourself, and each other!

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Can I just get it popped back to normal like Barbie?

JoLeave a comment

Guys, I’m sorry, yesterday was CRAZY. It was my birthday which I told you about, but we also had our kid’s track meet, which if you’ve never been (because I hadn’t been. Not sure if you could tell this about me but one might say I have the athleticism and grace of a newborn giraffe on roller skates, so I did not participate in sports in high school) takes about 4 years hours and involves a lot of time waiting for it to be your kid’s event while kids stomp up and down the bleachers and there’s at least 4 other kids screaming then a small handful with their heads together giggling while there’s conversations simultaneously in every direction and your brain seems to latch on to a single word from each one of them collectively making NO fucking sense, bu… GEORGE!

We have to have some ground rules Sir, this is not sustainable. I’m here to tell a story, to make someone laugh even for a minute. You can’t keep interrupting me, its rude and disrespectful of these poor folks time.

Anyway, so before we went I wanted to zone for a bit and I figured I’d do the lawn, nice and sunny and before the heat of the day. All week I knew where I was going to go for birthday dinner. I was going to say the name but if the wrong person reads it I could be liable, I’ll have to research that. We’ll just say it was a BBQ place that I had been looking forward to going to for two weeks, it wasn’t as good as I remembered. Well, so it was already a low spoon day, I thought mowing might ‘recharge’ me since it does help me mentally. It did not. So I was almost out before we got there, but you know the drill, you soldier on. Then I had to walk. I had to walk far. SO far guys. Then METAL bleachers! I mean the nope’s were piling up.

I’m on a new med because of the eye (I don’t know if I showed you but I have something like a stye on my eye and we are trying the meds for three months to see if it responds.) I was told it might make me a little more sensitive to the sun. I was ill prepared for that situation too as it turns out, but at least that was easily rectified as daughter had sunscreen. I applied it too late of course so I felt every inch of me tighten. NOT A GOOD PLAN AHEAD-ER. I did wear a hat so I was kind of prepared, however, I neglected to consider my neck would be exposed. So I didn’t apply sunscreen. So yeah, today was maybe a 11 on the pain scale today. I’m finally coming out of it, I can tell when I’m on the upswing, no more down, in the words of T-Pain ‘we goin up!’
I’m concerned about my hip. Its pretty well constant pain now, and I get these blinding white hot flashes that will knock me down, so I’ve been debating getting shots, I know people who have had positive effects and those that had negative effects. Also this convo, it was hubby and I talking about it for the fiftieth time

I don’t know why it hurts so bad

Could it have anything to do with how you sit?

Why? I just sit normal

DO YOU though?

(that was all pics from today but all the way I normally sit. I almost always sit with one of my feet under me and yeah he’s not wrong lol)
So today was a recovery day all in all it was good, just a bit too much pain for my liking. I did discover something dangerous yesterday. Braums has dreamsicle shakes! Well its just orange sherbet and vanilla ice cream they don’t call it dreamsicle, its just half vanilla and half sherbet shake.
After I was able to sit down tonight I just found myself staring blindly somewhere in the general vicinity of the tv, nothing really notable but gang, listen to your body. Follow its cues. It will leave you so much happier at the end of the day. No one can know how you feel but you. I read somewhere theres a good percentage of people who go through life without any headaches. Thats UNFATHOMABLE to me. I bet something that was a 2 or 3 on a spoonie’s pain scale would be a 10 to them, they’d probably think they were dying. We are all different, perceive things different, experience things different. Til next time gang, take care of yourself, and each other.

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…. survey says… FLARE!

JoLeave a comment

Hey gang. I don’t have much to say today because today is a heavy pain day but I think tomorrow will be better. Well it will be because I said so and its my birthday and I intend to make it my bitch. Pain be damned I have shit to do! I even got whipped cream because I was going to make myself some birthday cupcakes, but I forgot to get the cupcakes. You know what’s really good? Apple cinnamon whipped cream, you make it with, DAMNIT GEORGE

Anyway, with my flare kicking my ass I haven’t been mustering up the energy to do anything other than put my head down and survive the last few days. I had plans to mow the yard but had to be alone this afternoon and we try and make sure he’s here if I’m outside. I might try for it tomorrow morning, which I know is dumb to do on my birthday but it gives me a deep sense of peace.
My leg/hip is the main source of problems. Its the side that took the brunt of the impact from the car accident, but its more front of my thigh. Its so weird, there’s got to be exposed nerves in there. As anyone with fibro will tell you, we’re limited in options of what even has a chance of working, but I’ve purposely limited my choices further. I’ve recently found that any ache or new pain I have brought to my doctors attention has gone very similar to this:
So, what brings you here today

Well I have a new ache, its (there’s a number but we’ll use my leg for this example), its usually at maybe a 2 or 3, like enough of an ache in the background to notice, but not to do anything about but recently it hasn’t gone below a 5 and will frequently jump up to a white hot eleven with no notice and its so severe I will fall down because of it, like just an absolute blinding pain, almost like somethings brushing against a nerve’

I swear she didn’t even look up, just nodded and put info into a chart.

Yes, I’m sorry, that’s part of fibro from what I understand, have you tried ice or this med or that or a combo…

Look ma’am I’ve had fibro for 16 years, I KNOW fibro pain, this is NEW.
Its fine. She’s probably right. I just feel like I’m not being heard and it adds to the pain and frustration until I’m walking around like a boiling tea kettle. But we’re managing. We got up. We ate something. We made a number of new products and we researched how to make 10 more.
Progress, any meaningful progress anyway, doesn’t happen over night, but it happens. I know this. I have seen it. I’ve done it. Just keep pushing forward my friends, its all we can do. Every once and a while reach your hand out, whether in need to or offer assistance, people care. You matter.
Tomorrow will be a good day. Til next time, stay kind to yourselves and each other.