I’ve been officially diagnosed for only a year with fibromyalgia. I have dealt with, suffered from, tolerated and ranted against chronic pain, fatigue and the overwhelming and ever growing feeling of “AARRGGHHUUUUGGGHHHH” for 15 years.
The things they talk to me about at the Pain Clinic are how to deal with 24/7 pain, how to tolerate the minutia of being a human, (how painful can it be to shower, dress AND go to work?) and how to deal with the depression.
I’m not depressed. I’ve been tested. I’ve been talked to. I’ve been “dealt with”. I’m angry. As this thing, this monster, creeps in and continues to take a little more of me every day I fight it as best I can but I can feel my lead on it slipping. Day by day. Stress by stress. Because I look in the mirror and I hardly recognize who I see. I’ve put on so much weight because of the medications and lack of exercise. I can’t exercise traditionally because of the pain. I wake up, I’m in pain. I come home from work, I’m in pain and exhausted from pretending to be happy and bubbly. I’m not happy and bubbly. I’m dark and twisty.
I’m darker than anyone is allowed to know. Meredith Grey has nothing on me. It’s because of the anger. There are five stages of grief- I have been stuck in “anger” for …. a very long time. I am angry at my body for betraying me. I am angry at my willpower for not being strong enough to deny this monster entry. I am angry even, at genetics. Some experts believe you’re more inclined to have it if another family member was diagnosed/suffered from the undiagnosable. I’m angry. Always. I hide it as best I can but some days are harder than others. I lash out at coworkers, the boyfriend, random poor sales associates at stores that dared ask me to join their shoppers program. I want to explain to them what caused that because usually you have to provoke the bitch to come out.
I have graduated to lidocaine infusions because I’m drug resistant. I go to the pain clinic and sit for a couple hours while 500 ml of poison are pumped into my system to fight this syndrome where no cure exists. So far I still get decently high on the valium they give me to start off my treatments so I doze or say random stupid shit during. And the treatments last long enough that this is my treatment plan for the foreseeable future.
But then it wears off.
And the pain comes crashing in on my like a tornado taking out a house. I wish I could say its gradual. For both my own sake and for my doctors sake. But it isn’t. One day I am functioning at a tolerable 6, maybe 7. (if you don’t know- a fibro patients 6-7 is your 9-10) The next, I’m ramped up to a good 12-14. On a scale of 1-10. And i have to manage that pain until my next treatment. Which is still a solid 7 weeks away. During holiday season. Working retail. Lord baby Jesus, have mercy on everyone’s souls.
But I’m angry. Always angry. It’s just what level that anger is at on a given day is the question that should be asked.
Will I shoot up my workplace? My old school? A random movie theater? No, because I still retain my sanity and humanity. I still get choked up over home coming videos of military peeps. Don’t even start with a pet story if it doesn’t have a happy ending. I’m just angry. I honestly wouldn’t know what it would feel like to have that anger buoyed. It is a constant- with good friends? yeah I’ll laugh, tell silly stories, drink, eat, be merry but the anger is there. It’s a constant companion. Almost something warm and fuzzy to curl up with on cold nights. Only this beast is hot and stabby. Makes me toss and turn all night. Makes me stalk around like a caged animal, with an anger no one can manage, no one can touch, no one can comprehend.
I know why I’m angry too. So you’d think I could move on to acceptance and get through the 5 stages and be on my miserably merry way in my fibro land. But nope. Anger has proved to be a nice little comfort when everything else goes to shit. I’m angry because I cannot do what I used to be able to do. I’m angry because I do not look like I used to. I cannot fit into some of my clothes. I can’t work all day, then come home, put on my hiking boots and go for a 3 mile hike. I can’t get my laundry done, vacuum, dust AND do errands all in the same day anymore. I can’t make plans with friends without feeling the dread of “will I cancel on them because I’ll decline because feel like shit?”
I’m angry. I’m not depressed. Don’t assume depression is my diagnosis with my shitty syndrome of fibromyalgia and because I look the way I do. Anger should be a diagnosis. And no, I don’t need anger management classes. I need my brain and spinal cord to stop freaking the fuck out and accept pain on normal levels.
And now for a little eye candy because why not?
Storms and other big weather events have always affected me health wise. Migraines especially. But I feel that shit in my bones. Cold weather, you know, the 2 weeks of winter weather we get here in central NC … I can feel where I was thrown into a wall in college by a freaked out horse … my whole body will just ache with that cold, deep ache. But especially my nose … where I broke it. Its a great feeling. Feels broken all over again.
Ever since I started lidocaine infusions as a treatment plan for fibromyalgia, I can almost predict exactly when the medicine will wear off. Whenever there is a storm event here in the triangle of N.C. We’re currently preparing and waiting to see what Hurricane Irma plans to do … if she even has a plan or is just so pissed off and angry at the world she’s just going to attack as much as she possibly can so she’s just going to veer and steer in every direction she can.
But the first time I had the lidocaine infusion, it only lasted 3 weeks when it wore off in the middle of a horrible storm event at the end of April. And it felt like someone had taken a bat and whacked the crap out of me. I remember crying some days as I just deteriorated into the pain. I didn’t have anything to get me through. My next infusion was at the end of June and this one has lasted this long – it was a slower decline this time … I could feel it happening and was better prepared for the pain to creep its way back in … warn others that it was coming. (I, like others who get uncomfortable, can get grouchy/bitchy) So as my pain scale crept back up to an 8 … I also had prepared my doctors better how I react to the wearing off and I have meds to help with the tapering. This time there is only 2 weeks between tolerating this and my next infusion. We have all decided despite the tachycardia I experienced at the last treatment, this is the best course of care for me as I am drug resistant to everything else we’ve tried. (I’ve been through 10 different medications in 2 years trying to find a treatment plan to manage chronic pain).
The tachycardia was chalked up to a subconscious reaction to my body receiving a toxic dose of lidocaine. They tried to tell me I was having a panic attack – I told them if I was, my brain didn’t tell me about it. I was literally think of nothing. I was high on valium and the last thought I had was my pulse ox monitor looked like a transformer. I was even drifting off to sleepy town. Then my chest felt funny, and I felt light headed and then my chest felt like it was caving in and all of a sudden 7 nurses and 2 doctors are hovering and moving mad fast and pure oxygen is being pumped into my face. My brain finally came back to earth and decided to take control of my body again and got everything back under control (Heart! HEART! Sonofabitch … Calm down. We’re good! we NEED this lidocaine to keep this body functioning! Get your shit together! LUNGS … in …. out…. slower ….. there you go …. thats it …. SLOWER! Once we get our shit together we get to go home and sleep and that’s what we all really want.)
So here I am. 2 weeks out from my next infusion and I can’t wait. Seriously. I appreciate that I have a treatment that has zero side effects (if you’re going to react it’ll happen in the first hour of being pumped full of a toxic level of lidocaine) that brings my pain level down to a tolerable 5/6 down from a constant and throbbing 8/9. I could do without the tachycardia next time though.
I suffer from resting bitch face. Or RBF. or more politely known, angry resting face. Or any many number of other phrases people come up with. And are also accompanied with “why you mad?” “whats wrong?”.
I have had it as long as I can remember. I have photos going back to when I was 3 with this face. I call it what it is “resting bitch face”. I also call it my “fighting aging the best way that I can” face.
It can cause problems in different areas of life. Work mostly. People see me and go “whoa, why so angry?” Not angry, just not standing around with a dumb smile on my face. People feel they must dig deep and get to the root of my problem. Thing is- I don’t generally have problems. 90% of the time I’m thinking of food. the other 10% …. what I’m gonna watch on Netflix. My life is really exciting and thrill seeking yea?
But when people don’t know this about me they are automatically taken aback and generally leave me alone. Which I’m ok with. I haven’t had the multitude of problems many woman lament about on Twitter or Facebook running into men. Mostly because I think I have “back off or I’ll cut you bow to stern” tattooed on my face that only men can see. And some women. I have been fortunate and have only faced issues in extreme circumstances. I credit my resting bitch face for this. Cause it’s pretty epic. Especially when I also get “cold dead eye stare” going.
The biggest issue I run into is “why so angry? you should smile!” to which my response tends to be a horrible grimace or if I’m feeling frisky I’ll tell them they look any kind of way and do something about it. I don’t take kindly to being told to smile. Unless its my mom…. then its grin and bear it bitch, she’s your mom.
Actually, there really aren’t any downfalls. Maybe from the outside there are, (not the best thing to encounter at work) but for me, I’m ok with it. I simply respond with “I have epic bitch face” and that seems to make it all ok. Or they just don’t feel like trying to pick a fight with an Irish girl with a resting bitch face.
But remember, if we ever come across each other, if I have resting bitch face, and I am looking off into the distance, I am most likely thinking about food. How to prepare it, what to cook, what I’m going to buy later to cook with the meat I have in the freezer. Like I said, its not a big exciting life.
I started this blog many years ago to cope with my job at a hotel. I had some pretty great stories. I also posted stories about cooking … trying out new recipes and how they turned out. I left the hotel for retail and since stopped writing too much about work (retail didn’t have the same oomph as hospitality … like I said, there were some good stories, like how the hotel flooded the weekend of UNC graduation, or how I would have to chase hookers out of the hotel, or call the cops at least once a week, or had to wrangle a snake out of a guest room because my 6’4″ 220 lb maintenance man “didn’t mess with no snakes”. Then was told by a guest I needed to do a ritual sacrifice of it because it was of the Devil himself. No, I’m going to release Fluffikins into the woods away from your crazy hoodoo believing self and hope he makes it.
Like I said, some good stories. But lately, retail is offering up some good stories too. Like, I could write a pilot for a sitcom and actually pitch it to a studio and make bank stories. Like the couple who came in wanting a 2 carat diamond set in platinum on a $3000 budget. Or the lady who tried to convince 3 people with over 50 years experience in the industry between the 3 of them that the stone she dropped off to have set was a. worth $50,000 and b. a rare purple tanzanite found in the 1800’s. Tanzanite wasn’t discovered until the late 1960’s. This all happened just in the last week. An extremely quick math deduction (measuring the stone vs its actual weight) declared it a cubic zirconia. If you’re gonna lie, make sure you’re not lying to people who know their business.
I also write about my struggles with my weight and fibromyalgia. Because they are struggles and those two little bastards go hand in hand. I have fibro, which makes me feel like poo, in turn makes exercise no fun. I took Jack for a walk this evening, and I could be wrong, and it could have just been the 85 degree weather with 75% humidity, but we both kind of felt like crap after a 20 minute walk. I do feel far better since i had my lidocaine infusion on Friday (and my little heart episode keeping things exciting and nurses on their toes) but the pain is always there; its just been downgraded from a roaring pissed off lion to a fluffy rowdy kitten. My weight could also be a combination of factors- medications (I’m on 3 that affect weight and sex drive) and the fact that anything more strenuous than walking is agonizing most days, though I would punch baby penguins to ride a horse again…. talk about a work out. and I wouldn’t bitch to anyone. Have you ever ridden a horse dear reader? If not, you should. It changes your entire world. I’ve had the pleasure of accompanying friends on their first rides and its life affirming, life changing, and you understand the word serenity when you’re in the saddle. I’m not talking the spaceship though I’d kill something cute and fuzzy for that too.
I’ve gotten off track. Maybe not … I’m not sure. I write because it allows me to see what is going on inside. I don’t write about politics or world events because everyone else is. Yes, I have opinions on them, yes a whole lot of shit needs to change. When I was high on valium for my infusion I distinctly remember telling a friend that what the world needs now is valium. Write policies while high on valium. See how much people care about who marries whom, and who is peeing in which bathroom when everyone is happy and carefree on valium.
But I want to start writing more. To amuse myself, maybe you blessed reader, if you’ve read this long, with my shenanigans and antics. My cooking, which my boyfriend claims to be some of the best he’s ever experienced, and he should know as he’s worked in kitchens his whole adult life. Raw talent is what he calls it. I tell him I just do what my mom told me … just follow the recipe. I don’t think he believed me when I told him that’s literally how I learned to cook- until we went home for Christmas and mom said those exact words about a new recipe her and dad were going to try- “just follow the recipe”.
So yes, you’ll be inundated with new posts about work, life and cooking. Because the real world is shit and we all need a little amusement. And working jewelry retail is about as amusing as it gets.
for your (and my) viewing pleasure
well, maybe today… .possibly tomorrow. I just have to hold on until Friday. Then I have my infusion treatment which, pray to the sweet baby Jesus in a manger, continues to work. It has to work.
Thing is- I have learned to play nice with my demons from years past. Hell, sometimes I’ll even trot them out with friends when we’re drinking and we need a funny story “remember when my ex….” only, its funny now … wasn’t so funny then. My demons have been reduced to furbies that are only a little scary if you stare at them in the middle of the night and they start to talk without any prompts. But they have invited along new friends – that are bigger, angrier and have toothier. And don’t seem to care that no matter how hard I fight, they’ll continue to pound on the door to get in and force me to give up. But I can’t give up. Because where does that leave me? Still in pain, but reduced to a puddle of human rocking back and forth on my bed hiding in a blanket fort.
I read these blogs of others with similar struggles- those with chronic pain, fibromyalgia, and other autoimmune disorders that only if you too are a survivor, only then can you truly understand what its like. And many of them say they can spend days in bed during a flare. And I wonder, what do you do? Do you have a job that allows you to spend days in bed? Are you a self employed person? Do you work from home? Or are you on disability? I cannot spend days in bed. I’m lucky if I get to spend my days off in bed. I have to drag my ass to work, put on a happy face, and try not to kill anyone around me.
It’s soul crushing having this disorder. The new not friendly demons continuously bang at the door wanting to bring friends like anxiety (cause I don’t have enough of it already) depression (get the fuck away from me with that shit, I don’t have the time nor the inclination) guilt (I have moments of feeling guilt with this – when I don’t cook dinner, or cancel on friends, or can’t pull my weight at work, or do spend a day in bed just reading and cuddling with Jack). Those toothy demons also sometimes bring around anger. No, ok, fine always anger. Anger and I seem to be bedmates. I’m angry at this disorder trying to take over my life. I’m angry at not being able to do laundry, and grocery shop and vacuum and walk the dog all in the same day, then go to bed and wake up the next day and not feel like I’d been run over by a Mack truck then backed over by a zamboni.
I have dabbled with the idea of seeing a therapist. The pain clinic at Duke has me meet with one once a month to see “where I am” as far as the treatment plan and self care plan they have me on. Where I am? I’m pissed off. Always. The stretches that are supposed to help, hurt. And they don’t get better. The meds that are supposed to help me sleep – don’t. They just make me gain weight. Most likely from lack of sleep. I use up most of my spoons before I even go to work lately. Not familiar with the spoon theory? There’s a helpful link. When you, dear reader, are most likely a normal functioning adult human who doesn’t have a chronic illness (I know some of you do have one and I ache for you) you don’t think about the steps it takes to get out of bed, go to the bathroom, take the dog out, shower and get dressed…. that just cost me about 6-8 spoons. On a good day.
Thing is, I have seen a therapist once before- right after my divorce- and she flayed me open and left me exposed and didn’t give me the tools to sew myself back up. So I’m quite wary about the whole practice of psychology. Yes, based off that one experience- I didn’t want to go to her in the first place but I agreed per my boss at the time. And I don’t like talking about myself. Shocking I know coming from a person with a blog. Here, in blogosphere, it’s fine. Because I can’t see your lovely faces and I’m not expecting feedback. But as people get to know me, and my bastard demon, they get that look on their face, and they always ask “how are you feeling?” and I always take a beat and ask myself, do they really want to know, or are they asking to be polite? so I answer ” I’m ok” or “I’m upright today” or sardonically, “I’m alive”. Do they really want to hear how my spine feels like its been made from molten lava? How I’ve never been shot before but I can imagine the pain as my hip feels like the fiery blast of a bullet just exploded there? Always? Or how today its the left side of my body that’s decided it wants to go numb and have that cold depressed feeling you get after a body part falls asleep? but from shoulder down, and through the knee? Or how where I broke my nose 14 years ago, I can still feel the bone ache? How my feet tingle and burn if I forget to take my B12 vitamin? How the L5 in my back screams if I stand too long, but if I sit, its just as painful? How my skin itches the moment I get out of the shower, so I put lotion on, only to have to do it again a couple hours later even though the bottle promises 24 hour moisture? How if you stand close enough to me, you can physically feel the inflammation my body is giving off despite the medication I’m on to slow and stop the inflammation? How my fingers always feel swollen now, (they’re not) and I can’t make a proper fist, and the way I hold a pen is not how I was taught to hold a pen because I can’t grip properly because of the sensation of swollen fingers?
Its awesome really. If this hasn’t taught me anything else it has taught me patience. Not with myself because I remember me before this pile of crap got heaped upon me and there’s a irrational part of my brain that continues to think its temporary, that one day I’ll wake up and it’ll be over. Some magical medicinal unicorn will have visited me in my sleep and heal me. I remember that I could go for hours on my feet without needing a break and be whatever you needed. Handyman? got it. Cleaning girl? on it. muck stalls? got that too. Now, I can’t even walk across the store without feeling the need to lean on a counter and silently scream in pain. What have I become?
It has taught me patience with others though. Not those that get the sniffles and feel like the world is ending. No, take a Zyrtec and suck it up buttercup. But those that have daily struggles like mine. Which, yes, a rational person would say “well, if you can find the patience for them, can’t you find it for yourself?” You would think so. And I’m working on it. Progress is slow.
In other completely unrelated news, I binge on Netflix so I’ve waited a long time for Grey’s Anatomy to load season 13. and I’m binging the shit out of that. And all the boys are still so very pretty. Here’s to my favorite. He so deserves better than he’s gotten so far.
This was everywhere in New Orleans. After a while it felt not only like a cooking rule but a life mantra.
If the roux is no good, don’t worry, just toss it. Start over. Don’t fret over it. Same with life goals. People get too caught up in making sure life goals go exactly to plan. If it doesn’t work out, don’t fret, just make a new one.
That was the attitude in that city. Don’t fret. Just keep going.
My last adventure to the city was an amazing one. I went with a great friend who is just full of life and I feel full of life when I’m with her. We have amazing adventures when we’re together- whether we go someplace fantastic like New Orleans or hopefully one day Japan or Paris or just her backyard of Washington D.C.
We went on a cocktail tour of New Orleans that took us around the city and introduced us to bars that had been there since New Orleans became a city. Drinks that got their start there in the Big Easy. We made friends on that tour that we’re still friends with via Facebook as they were on a world tour from Australia.
We went on our own walking tour of New Orleans and found fantastic bookstores and little hidden nooks of stores that revealed fantastic stories of the city. We went to The Court of Two Sisters for a birthday brunch. Morton’s Steakhouse where she had a ton of gift card’s and we made a server’s whole week. Went to the boardwalk where I threw my wedding band to the river.
start with a roux.
its a life mantra.
I did the thing that I hate – I wrote a blog post before a recipe- only I didn’t actually say this was about a recipe in the beginning… I am now! I made chicken étouffée tonight and that was what brought back a flood of memories of New Orleans. I love that city. I found the recipe in the treme cookbook. It was really good. I suggest it. Hope you enjoyed my ramblings.
2016. The fire dumpster of a year. The year of any outcome. The year that claimed over 70 celebrities. The year that defined a country. Or 2. Possibly more. The year that I kept lying to myself.
Even when I finally got a group of doctors to finally diagnose me and not shy away from it (the dreaded fibromyalgia diagnosis) and get a team together to work on a plan to help provide me with the best quality of life from here on out, I continued to lie to myself. I have known for YEARS that gluten was a trigger. That it would cause the joint pain and stiffness to be even worse. That it would cause sluggishness and brain fog. But I continued to fall off the wagon because it was jut too damn hard to stay on there with the subpar flavored foods and expensive ingredients.
I became comfortable with the inflammation. I didn’t mind that it caused me excruciating pain – I had pills for that. Days off that fell conveniently in place to deal with the worst of it. And so I continued to be ok with being gluten free when it benefited me and eating gluten tainted foods when it wasn’t so convenient to be gluten free.
But I can’t continue like that. Its not healthy for me nor is it good for my well being. And a bunch of other bs that the doctors at the pain clinic would have you believe. But ultimately, I’m just fucking tired of the pain. And if I can minimize it even a little by this most inconvenient diet change then so be it. I’ll claw my way back on this most expensive band wagon with its still unappetizing breads and baked goods and “who are we kidding” crackers and be gluten free. I’ll give up the convenience of “just going with it” and being that obnoxious guest and asking “is this gluten free?” I can espouse to everyone and their brothers’ sisters’ wife the benefits of being gluten free but put a loaf of freshly baked sourdough bread in front of me and tell me I can’t have any you may as well just set a timer and see how fast I can actually make that loaf go away. Yes. I’m the worst Devils’ Advocate you’ll ever meet. But I can do this. 2017 is a year of new beginnings and something positive and all that bs jazz. Because being 34 and moving and creaking and squawking like an 89 year old isn’t very fun. And if its something this simple (HA!) to quit I can do this. It’s always easy the first few weeks or so but then something so stupid will break me. But this time no. I have to be strong. Strong like bull. Thing is, this isn’t new- I’ve known about this for years. I just can’t commit. Because no one can make gluten free breads as delicious and evil and horribly bad for you as the likes of Pepperidge Farms and Bruggers Bagels. But, new year, new you right? Right.
But some things will never change. A little Captain for you …
Absolutely hate it. I have finally made the move to be 100% gluten free as I have been working with doctors that finally believe I have chronic pain and have the official diagnosis of fibromyalgia. And being gluten free doesn’t completely alleviate the fibro pains, but it does help. And does it suck!
Gluten free foods generally suck. There isn’t a brand of crackers that taste like crackers. I finally found pasta I love- but I have to order it from Amazon. Bread as well- only one Harris Teeter carries it around here that doesn’t taste like the plastic its wrapped in.
And convenience? Bitch, please. There is nothing convenient about being gluten free. Every meal has to be considered, thought out, and planned. There is very little room for impulsive “ooh lets go here!” Because if you’re lucky, you’ll get a sucky salad… again. And be hungry again in an hour.
And I’m a grumpy, annoying gluten free person. I don’t like the “alternate grains”. Quinoa? No freaking thanks. I know it’s a “super-grain” but nope. Can’t do it. I’ve tried it a dozen ways, a dozen times and I can’t do it. And the mixing of 5 different flours to get the consistency of normal, all purpose wheat flour? yeah, super convenient. And cup for cup gluten free mixes is a joke. You have to go by weight, not by volume or you end up with ridiculously dense, not risen, and dry food.
Don’t come at me with the “healthy” aspect of gluten free diets. Not even a bit. I can be healthy and I know how to be healthy. And yes, being gluten free, I have naturally gone a little lighter on the carbs. Because the gluten free version of carb loaded foods suck.
I want “normal” foods with just a gluten free option. Why can’t I order in a restaurant and have a gluten free battered whatever? My options on most menus is relegated to the salads (minus croutons and most dressings) and burgers or chicken dishes without the buns. Why haven’t restaurants made it possible for gluten free people to enjoy same foods? P.F. Chang’s is the closest chain restaurant I have seen that mimics their menu items for gluten free patrons.
And paying extra for gluten free! As an example, we like to do frozen pizza once in a while, and the bf’s pizza- I can get 3 for $10… and one of mine would be $11! and it’s smaller. and its’ usually just cheese. Because gluten free is just “so much more effort”. Come on guys, whether or not people need to be gluten free, there’s enough of us to justify having gluten free products and keeping the cost down.
Having gone my whole life not being gluten free, then having to make that change it is difficult. Having to read labels, and scrutinize all kinds of foods, its hard. To turn down offers of people who bring donuts or baked treats to work … that just sucks! of all companies, why hasn’t Dunkin’ Donuts done a gluten free donut!? Why is that not a thing?!?
I hope as I get further along in both my treatment at the Duke Pain Clinic, and adjusting to being gluten free, *gulp*, forever, it’ll get easier. Something I won’t have to think about every time I go out- go out with friends, out for dinner, grocery shopping. But I will always hate it. Until someone (or hell, me) comes up with a spectacular Sourdough loaf that tastes exactly like sourdough … just gluten free … I will despise being gluten free.
I have always suspected I had fibromyalgia or connective tissue disorder or some other auto immune disorder that doesn’t show up in bloodwork or on any scans. But is a diagnosis of elimination is what my GP would call it and I don’t really even think it is that. It is what it is- it’s pissed off nerves that hold on too tightly to something for far too long then get their signals crossed and set something off. I may have very simply explained a very complex disorder or may have greatly made it more difficult to understand.
When explaining it to a co-worker one day, and having read it myself- Fibromyalgia can be triggered by traumatic injury. I had such an injury- I’ve actually have had several. But I can trace a lot of the pain and even migraines back to this one event. So while I could see her trying to grasp the intricacies of the disorder, she finally looked at me and goes “oh so its kind of like PTSD for the body?” Yes. It kind of is. The way the body reacts to stimulus and the way the nerves fire off differently than one without fibromyalgia could be the way someone with PTSD reacts to a triggering word or event. At least that’s how I feel some days. Someone reaches to touch me and my entire body tenses up for this painful moment- I know in my brain it shouldn’t be painful, this little touch, but it will be anyway.
I had finally gotten into my appointment that took months to get at Duke Pain Clinic. They sent in the resident with the intern, and he took my whole history and he was very attentive to everything I had to say, and put me through what I can only describe as minor torture. I would have told him more if only he asked the right questions. Then the doctor came in and she went over again briefly what the resident had come up with. She concluded that my symptoms over the years amounted to fibromyalgia. we talked about how my GP “protected” me from the diagnosis, and came up with a treatment plan. She increased my dose of Cymbalta and took me off all the anti inflammatories I have been taking for the past 7 years as I don’t have an inflammation problem per se I have a nerve problem. Well, as with anything stopped cold turkey comes the super fun withdrawal.
I felt like shit.
Tried to go about my day, but 24 hrs after my last dose of naproxen, (which I was up to 1500mg at this point to basically mask the pain) I had the dizzies and tried to go to work. Nope. Brain had a different plan. I had to pull over and throw up. Made it back home (only had made it about a block) and called work and told them to go on without me … they should be ok. Crawled back into bed and tried to sleep. Kept jerking and shaking but finally got to sleep and slept. As I’ve said before, sleep is the absolute best medicine. Surgery? Sleep it off. Migraine? Sleep it off. Bad day? sleep it off!
Yesterday I managed to make it to work … I still felt like something Satan’s dog threw up on the sofa but I was good. Shaky and medicated with caffeine. Today was better. Still working on getting to a “therapeutic level” with the Cymbalta but once I’m there I think I’ll be ok. And once my sleep patterns level out and get normal (what is normal for one who doesn’t sleep?) I’ll hopefully learn how to function better.
Things are actually starting to look bright. Not an endless cycle of dreariness and sleepless nights!
The internet wars are funny. In that they are funny because they are sad. Mommy wars. Wars between parents and non-parents. Dog people and cat people. People who live with chronic illness and those that don’t. Pokemon Go players and those that have no idea what a pokemon is.
Another morning and another meme telling me I don’t know what exhaustion is because I don’t have children. Excuse me? I don’t know what exhaustion is? Just because I voluntarily chose not to have children? Because I am already exhausted from working retail with chronic illnesses? Because of those chronic illnesses I am either kept up all night tossing and turning because I can’t get comfortable, or if I do sleep, it’s not quality sleep, again because the server that is my brain is sending pain signals all over my body because nerves misfire and keep saying wtf?
Tell me again how I don’t know what exhaustion is because I don’t have some pain in the ass toddler waking me up at 5 am. Oh wait, I do. It comes in the form of a 5 month old puppy and he at least lets me sleep until 630 am.
You my dear friend of this horrible and judgy meme, are exhausted because you have become a slave to your toddler. Because you don’t know how to say no when the king toddler demands roasted chicken at 10 pm and you have to roast a chicken because you can’t say no. What are you teaching your kid then? That they can have whatever they want? Now you’re just raising an asshole. This is why you’re exhausted. I am exhausted because my body hates me and nothing can really be done. End of story. But tell me again how your exhaustion is worse than mine.
Why can’t it be equal? Or the same? Or even different? Why must it be worse? Why must there be this war between parents and non parents? I’m more tired than you because I have kids. Ok … you chose to have kids. Or maybe you didn’t, whatever. but you have them now, you have to suck it up buttercup and deal with it. I do with my chronic pain. and my migraines. and my other issues. But I try not to make others feel less than because they don’t have those issues and when they mention they are exhausted, I don’t respond with “oh yeah? try having xyz disorder”. I ask “oh yeah? what happened?” or depending on the person, “oh yeah? whats her name?”
So take your judgment and put it in your back pocket and take that time it took you to make these memes and type out your hateful responses to us “non parents”, and take a nap.
if you need motivation, pretend this fella is your body pillow