Hi. My Name is Fibromyalgia, and I’m an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me.
I can attack you anywhere and anyhow I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now!
I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
Oh, yeah, I can make you feel anxious or depressed, too.
If you have something planned, or are looking forward to a great day, I can take that away, too. You didn’t ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me.
I’m rolling on the floor, laughing. Just try.
You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.
Your family, friends will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of they will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!
In closing, (I was hoping that I kept this part a secret), but I guess you already found out… the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia. ♥️
A well written article from CNN about how depression, a medical condition, impacts the lives and deaths of people struggling with it. PLEASE READ.
Some particular statements I found poignant:
“Just because you can’t see it inside someone, doesn’t mean the pain they are experiencing isn’t real or overwhelming.”
“With cancer, you see people you love deteriorating on the outside. When someone struggles with mental health issues, you often don’t see it.”
“There’s a big difference between wanting to end your pain and wanting to end your life. But some of those who struggle with mental illness may not be able to see the difference.”
“Stop assuming you know what someone else’s life is like, or what it’s like to live in their head. You have no idea what somebody else’s life is like. And neither do I. You have no idea what pain or trauma a huge smile may be hiding.”
If someone has depression or even occasional suicidal ideologies, offering support instead of criticism is always the best way to go. You do not, can not, know how much someone is struggling with their demons. As Ellen says, “Be kind.”
Those who I know who should read this the most won’t even bother. They will consider themselves better even when they have struggled with their demons.
Christmas is a funny time. I am a big fan of Christmas: the decorations, the gift giving, the food, the comradery, the joy, the love, the good-will. But I’ve also experienced the inverse at Christmas: the sadness, the lack of motivation, the sence of obligation, the loneliness, the isolation, the soal crushing depression.
I can & do get depressed just as everything starts & it can take a while to get into the holiday groove. This year, as always, I start wearing Sanata hats on December to “fake it til I make it.” But, I’d started getting into the holiday mindset by the beginning of the month – I was already in the Christmas mentality by December 3rd.
Santa Hat starts December 1st, every year.
THIS YEAR IS A GOOD YEAR!!
The Tree & Decorations:
The girls came over on December 11 to decorate the big tree with me. Doing the while thing is overwhelming. Plus it’s been a reoccurring tradition for most of the last 20 years. It is a 6½ ft spruce tree that goes upstairs in Mom & Dad’s big front window so it can be seen from outside.
The nativity screen they choose was the small set my Grandmother made. Next year they want to set out their Grandma’s set, the set I grew up having While similar to my grandmother’s set, their Grandma’s, Mom’s, set is significantly extensive. It has, possibly, 3x the number of pieces I have and would take up the entire self as oppose to the 8″x12″ manager I use.
The stockings are hanging off the heavy stocking hangers near the Nativity scene, on the same shelf. There are three, for stockings for Mom, Dad & I.
MY Tree & Decorations:
Several years ago, I got a dollar store 8″ tree. I put a bit of tinsel ribbon on it & a doz small ornaments. I’ve since raised the small ornaments & will be donating that tree off. Two years ago, I bought a 18″ tinsel tree with a single strand of lights &’some small shiny ornaments. I’ve been using that in my space for the last few years.
This year, I just purchased a proper artificial 3 foot pine tree. While it was prelit, I added a second strand of coloured lights & might add another strand next year. I ransacked the 2 above trees & relocated their ornaments. I also pilfered some of the ornaments from the big tree, ones that are personal to me
I bought a topper from Dollarama, painted it & it looks not too shabby. I also started painting some of those dollars store ornaments, but I’m not doing them all cuz I don’t like them all. Gerry, my bestie, is 3D-printing some specific ornaments for me to paint. They may not be done until after Christmas. But they will be awesome for next year.
I have my small Precious Moments Nativity scene on the table under my tree. I have a single stocking holder that’s I’ve had for years with a single stocking hanging from it. There are several Christmas plushies across the apartment. And I finally plugged in my laptop’s usb decorations.
I didn’t pull out Father Christmas this year for two reasons. Firstly, I couldn’t find him for the first two weeks of December. Secondly, I realized he doesn’t match anything in my home now. The pastel coloured robs just don’t work anymore with my colours. They almost clash, so I left him there for this year tho I should make sure his head is attached.
Gifts:
I’ve gotten most of my shopping done. As per usual, I’ve overspent. But at this point, I only need to pick up Lilly’s cookies.
I still need to put the cookie factory into high gear. Got 2-3 recipes from scratch this year including some gluten free options.. Thinking of Nanaimo bars for Christmas if I can.
Kellis Cookie Factory is Open
I’ve already sent or dropped cookies out to Megan/Evan, Lindsay/Aaron, Declan, Jenn/Chris & Dale. On the 23rd we have the family dinner and thus need the cookies for all the nieces, nephews and their partners.. This means 4 lg bundles & 4 smaller bundles . One of each needs to have gluten free. Beyond that, I have 2-3 larger packs and 5-6 small packs.
I *may* need to go over to Dollarama for a pack of licorice for my mom, for her stocking cuz, well, I ate it.. lol
Food:
Besides the dozens and dozens of dozens of cookies I will bake?
Besides the NINE different type of cookies I expect to bake (or non-bake)?
Besides the Yummy Nanaimo Bars I’ve been craving for weeks that I’m hoping to make for Christmas? 2 kinds!
Family Christmas dinner:
I am responsible for the vegetables. I have bought some flash Frozen vegetables: green beans, corn, brocoli & turnip. I’m hoping I can borrow my sister’s steamer for the first three & mom can help with the later, since she’s the only one who consistently eats it.
I think, since no one has said anything for buns for Christmas, that I’ll probably have to make my cheese buns. *Eyeroll*
Christmas Morning:
I am at my sister’s for Christmas morning/brunch, while I haven’t been asked to bring anything, I grabbed 2 packs of large cinnamon rolls. My dad also picked up bacon for me.
Back Bacon, Bacon & Pillsbury Cinnamon Rolls
Christmas Dinner:
I’ve been asked to bring dessert.. I grabbed 2 pieces & an apple crisp/apple crumble.. picked up icecream everyone else can eat & the ice cream I can eat .
My Friends
On top of everything else, I have social activities.. Sometimes dinner, Sometimes a quick chat or a coffee, Sometimes a hike, Sometimes hanging out at home (theirs or yours), Sometimes living it up! Hanging out with family, biological or choosen is always fun.
I went on a bit of a downwards slide on the weekend before Halloween. Found out my ex has a promise ring from his new girl. He proceeds to show it to me, tells me what it is, and realizing his stupidity says, “it’s not what you think it means”. Well it may not mean much to him, but I’m sure it does to her.
She also has to have ordered it while he & I were still together. Not impressed.
Spent the next week either busy af, or just feeling everything. No middle ground. Either complete distraction or completely emotional. No stability.
Slowly been trying to work through my emotions about the end of that relationship this last week.. Ups and down, but they are becoming a little less of a roller coaster. Even small improvement is improvement.
For me, with depression, comes short temper, bitchiness a short fuse, isolation and zero motivation.
The only time you will see me do are the ones that are required, in my opinion, I’m dealing with one of my vices, are the rare times I am trying to get out of my head.
Don’t you also hate it when, despite knowing how badly you struggle with fatigue, someone who doesn’t is always delighted to tell you, “Yeah, I’m tired too?”
Me too, and I’ll explain why. I fully understand that everyone is entitled to feel tired, it’s a way of life. I also understand that everyone has different levels when it comes to how much tiredness their body can take. However, if you’re a person who is tired because they went to bed two hours before their alarm, or a person who is tired because they were binge-watching “Grey’s Anatomy” for two days solid without going to bed (I salute your dedication by the way, just saying!), then your tiredness level and my tiredness level aren’t really the same now, are they? In my opinion, people who sit there claiming that their tiredness from burning the candle at both ends is the same as tiredness from illness are pretty much insulting every single chronically ill person out there. Obviously with strangers, it’s slightly different as we can’t expect them to carry their crystal balls with them everywhere they go. But, when it comes to our loved ones who know our situations and who know how fatigue affects our minds and bodies, that’s when, personally, it makes it seem that my feelings are less worthy.
So, how is chronic illness tiredness different than “regular tiredness?” Well, seeing as everyone responds differently to fatigue, I will answer that question based on my own personal experience. Tiredness due to my multiple chronic illnesses is a level of fatigue which involves me sitting on the toilet crying my eyes out because I am so tired. It’s when I have hardly been able to move around my house due to lack of energy, yet I’m still sitting on the sofa yawning my head off, and an extreme bout of nausea because I am just so tired. It’s being unable to have a conversation because exhaustion has sucked all of the energy out of my body; therefore opening my mouth would use up a lot of the limited supply of energy I currently have to work with because, you guessed it, I am just so tired.
What are we so tired?.There’s several reasons. We can’t get to sleep cuz insomnia is common. We can’t stay asleep. And because our body is constantly fight with itself trying to deal with daily varying levels of pain and other symptoms of our illnesses.
Unlike healthy people, getting an early night doesn’t fix my problem. Doing less activity doesn’t fix my problem.Getting more sleep at nighttime doesn’t fix my problem (and that’s if I can even get to sleep!).Despite being absolutely mentally and physically exhausted, I can’t sleep, even though I would love to (and nearly do) fall asleep wherever my head lands.It’s debilitating. It’s exhausting. It comes with the territory of multiple chronic illnesses (fibromyalgia, chronic fatigue syndrome, etc.)
So if someone you know with chronic pain, especially moderate to severe chronic pain, and the say that they are tired. They are likely exhausted on, or more more likely off their feet unable to do much We don’t like to complain but when we do, it’s gotta be big.. So please don’t respond with a flippant “Me too!” What you are dealing with is quite possibly very different from what someone with chronic pain is dealing with.
i know it’s been a while since I’ve posted.. alot’s been going on.. Dealing with mental health and multiple physical health issues . Add, I think, perimenopause.. hot flashes & chills suck..
So big news : current weight loss 129.9 lb. I also got my first two rewards for weight loss.. when they heal, I will share..
Since my last post, the new nurse Christine was able to get my meds to where they were supposed to be for the most part. I will be eternally grateful for that.
Unfortunately, real damage was done in the way of pain.. Fortunately, I do see Dr Sith tomorrow.
But the brightest moment of this 72-hour hold was today at about 6 in the evening when I heard a voice. It was a woman’s voice. She had a Jamaican lilt to her voice. I placed her immediately as being *my* psychiatrist I walk towards her voice and she was in a room talking with a patient but she looked up at me and despite the mask and my weight loss she recognized me immediately and then saw a surprise on her face.
But she’s my doctor and I’ve been in her practice for almost 5 years. She is familiar with what’s going on with me and my history so I was super comfortable at that point. I took a deep breath and was able to relax.
A half an hour later, she and the nurse came down to my room and we discussed what caused me to come into the ER.. She wanted to know how I got to the ER.. We talked about how I was feeling and feeling out my.state of mind.. She asked me why I was so animate about leaving as soon as the hold was up.. She reacquainted herself with my home situation.. We discussed my weight loss – cuz it has been 2 years since she’s seen me & I’m definitely smaller. She asked me what I thought she could help with..
Apparently, she liked what she heard and she discharged me. WITH a meds change, which is really all I wanted.. That and to actually have an appointment set up with her which got done earlier as well. 🙂
Am I still pissed about how things went down?? Definitely. Am I happy with the final result? Absolutely!
Fibromyalgia 
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