Posts Tagged ‘Emotional Support’

Stress Impacts the Body

November 5, 2021

You all know stress impacts the human body. No one knows this more than people with Fibromyalgia. Part of our issue is that our muscles cannot relax because of the pain signals we are receiving at all times. Add stress to that, with most common physical reaction to stress is muscle tension. So adding tension to an already agitated muscle makes for a disaster.

No one knows yet 100% of the cause of Fibro. If it’s actually a physiological issue or if it’s a neurological reaction? Either way, the addition of the tension to the already agitated muscle, skyrockets the pain, with definite real pain.. Not just a neurological misfire that we could potentially be having.

And before anyone says I’m minimizing pain, I am not. People with fibromyalgia feel pain every single day. – it’s the cause we don’t know. We don’t know if the cause is something physical in the muscles, we don’t know if it’s part of the nerve chain or even something in the brain. We.just don’t know And as many of you know, I’m in a remission with my Fibro. I still feel pain, but I’m better managed and had made alot of changes a few years back. As a result, my pain levels rarely rate over a 5 – right now. I have, in the past, been bed bound. So I’ve been at both ends of the spectrum. I am the last person to downplay anyone’s pain let alone someone with Fibromyalgia.

But back to stress… I’ve been dealing with some pretty intense issues lately.. The big 2: 1. Problems with my Mom & our relationship.. 2. Issues with the guy I’m seeing – relationship may be ending. And I don’t think either one reads this blog. Those are the big ones but there is always in additional normal day to day stresses..

So….. On Monday night I had a breakdown. A complete emotional & mental breakdown (this does not include the meltdown I had earlier that day). I was in such hysterics that at times I could barely breathe.. You also don’t want to see what my kitchen looks like, cuz it all hit me as I was cooking stir-fry, which means three pots on the stove, each carefully times so everything finished hot at the same time. Interestingly enough I could feel myself deteriorating and the rice was pretty much done, the meat was pretty much done and the vegetables were almost done so I took the presence of mind to grab storage containers and just put everything in the fridge because there was no way I was going to be able to eat it and I have no family to feed. But I didn’t give myself enough leeway and ended up destroying the contents of the shelves with the storage containers.. Apparently I have a decent arm because I found, after the fact, empty storage containers or lids in my dining area, my office area, one almost in the living room and also my bedroom.

I ended up calling the local mental health line & spoke with a gentleman named Craig who listened & offered support..Initially, my mind had been racing with a lot of dark negative thoughts.. But I finally got calmed down enough after over an hour of venting. & I was no longer in that dark and twisted headspace.

I woke up Tuesday morning physically & emotionally wiped. Unfortunately this was one of the days that I just can’t say no. I had to drop my mom off at her doctor’s appointments because she no longer drives. I still also had to finish prepping my Cub Scout meeting.. Which meant I also had to run my Cub Scout meeting because this week got dropped in my lap on Sunday. The meeting went well and I was able to get out of my head for almost 2 hours not thinking about those big two issues. By the time I got home in the evening after my meeting, I stripped down, showered, got extra medicated and watched some mindless TV. That’s all my body would let me do – I pretty much hit the wall. Oh & eat some of the stir fry from the night before – lol.

And this excessive physical reaction is 100% due to stress exasperating the Fibromyalgia and some of my ppother chronic pain issues.

30 Facts!!

May 24, 2021

Originally written for the 25th Anniversary with 25 facts,, this is a list of things you should know, from someone with Fibromyalgia. From someone who experiences it, not just studies it. I have taken the original, modified it and added to it from *my* perspective as my experiences with fibro are not the same as hers. OP info available at the bottom.

  1. Every morning is a tough morning.
  2. I can sleep all day and still feel like I just ran a marathon.
  3. If I went out last night, I need a day or two or three to recover — its okay, it was worth it.
  4. When i’m tired, let me sleep.
  5. Certain foods make me flare up, For me that’s items like Ice cream breaded food products (like fish sticks or chicken fingers), mayo & salad dressing, KD, etc.. Some I know why, others no clue.
  6. When I’m in a flare, leave me alone in a dark room but please check in, even if I don’t answer. It makes me feel cared for & loved .If I am flaring and I am responding, I’m likely asking for a ride to the ER.
  7. Yes, diet matters, but in flare mode, all bets are off.
  8. Yes, my face is swollen. No, I didn’t gain 5 pounds overnight… Well I could have gained, but not on my face.. So, Yes, that is a tell that I am in a flare.
  9. I have many different sizes of clothes in my closet to accommodate flare vs. non-flare days. I currently have clothing from a medium ( very generous medium) to 3x.. I’ve lost weight, so likely only a few items & eventually they will go too.
  10. Fibro Fog sucks. Ya know when you get absent-minded every once in a while? Misplaced your keys? Misread something? Forgot to water the plants? That’s Brain or Fibro Fog. While it happens to everyone at some point, it not the norm. For people with Fibromyalgia this is the norm. Every day. I have even lost my train of thought, mid-sentance. It happens enough that those close to me don’t bat an eyelash when it happens. Some even see it happening & will remind me of what I was saying. The worst, is fogging out when I drive & I love to drive, but have to be super careful to make sure I am clear minded.
  11. Ask before you touch. Some days, I can barely tolerate the feel of clothing or even my hair on my skin. When I’m ok, give gentle hugs please — my skin & muscles may still be tender. But if I give you a bear hug, you can give me one back!
  12. Bright lights, loud noise and too many smells can overload the senses and can cause nauseous (or worse) or kick in a migraine.
  13. Allergies play havoc on my body. Scented products like perfumes & body products are typical culprits Sometimes I don’t even know I’m allergic until I experience it, So it’s a bit of Russian Roulette when I go into public because I can’t control what scents other people wear. Food allergies/sensitivities do not make life any easier either, especially when eating out.
  14. I am a human barometer ( there’s a post around about that.. I can typically tell it’s gonna be too cold, too wet, too hot.
  15. Yes, i am on medications, sometimes even alot of them. I have a decent relationship with the pharmacy staff, and I know exactly what all my medications are, the dosage, and why I’m on it & how it helps.
  16. To me, car rides are joy rides cuz I really love to drive. I need to stop every hour or two to keep my legs from going numb or seizing up. It, for me, is so worth it! But so many with fibro feel differently than I do & equate it to a highly painful roller coaster ride.
  17. Some days it’s OK to let my Fibro win. It’s a marathon, not a sprint.
  18. I can get moody. You would be too if you were in pain all the time, be patient with me.
  19. Don’t be surprised if I can tell your mood as soon you walk in the room. My Fibro/spidey-senses are tingling.
  20. My day, week and month are carefully planned to accommodate my Fibro. Only important events & people like you are scheduled.
  21. If I cancel my plans with you, don’t be mad.. Remember, I made plans with you, because you are important to me. I am trying and obviously want to hang out with you, so please keep any nasty commentator yourself as I already feel guilty.
  22. Your friend with Fibro that says they have no pain doesn’t make me feel any better. Plus if they have no pain, they may not have fibro cuz *all* Fibromites have *some* level of pain at *all* times Alternatively they could simply lying either about having fibro or about being totally pain-free. Also, just cuz someone says they are “Good” that’s does not mean pain-free
  23. “You should exercise.” ROTFLMAO. Have you considered going to the gym while you are in the middle of the flu with body-wide aches & pain, fatigue? Didn’t think so, so how can you expect me to when I have body-wide aches & pain and fatigue? Yes, I do exercise, but I’m not a hypocrite. Do you know how long it took from me to go from bobbing in the water during aquafit to get to my current level of exercise? Years!! It helps, that I have lost weight. Before you use me as an example of of someone with fibro who is ‘fit’, remember that I started my journey to become healthier & to increase my fitness level in the winter of 2012, almost 9 years ago. And I would not consider myself ‘fit’
  24. Going to the doctor makes me sad & sometimes overwhelmed— it’s a reminder of my condition. And it doesn’t help that I have at minimum a half dozen medical appointments each month – GP, Pain Doc, RMT, Physio/Osteo therapy, Gyn, Neuro, Dental, Psych, mental health support groups, and one offs for tests like bloodwork, ultrasound, x-ray, MRI or CT.
  25. There are zero no-pain days, but my low-pain days are my happy days. So if I’m looking good and acting good and I’m social, I’m better, right? No, just a good *low* pain day. Fibromyalgia is chronic & will not go away
  26. Because of Fibro, the mandated downtime gives me the opportunity to write this blog, and I’m grateful. Unfortunately, some of that downtime does not even permit blog writing because the pain or fatigue is*too* intense, so I have missed posts.
  27. Because of Fibro, some Fibromites get to spend more time with their families than if they were healthy.
  28. if i am being a dick about my health, you will not change my mind. I have to figure it out myself. For those in my life who put up with that for years, I am sorry.
  29. Because of Fibro, I’ve become part of a strong, supportive community that reminds me I’m never alone.
  30. Yes, I have depression. No, it’s not because of my fibro. My depression started at age 16, but fibro, we believe, started from Mono when I was 19-20. So, obvs they started at different times plus I do know the triggering event that started my depression.

Original published by Puja Rios on May 11, 2007 at https://www.huffpost.com/entry/25-facts-for-fibromyalgia-awareness-day_b_59148663e4b01ad573dac1c2

Bell Let’s Talk 2021, Final Tally

January 29, 2021

On Bell Let’s Talk Day, Canadians and people around the world joined in to help create positive change for people living with mental health issues. Thanks to your actions, Bell will donate more to Canadian mental health initiatives.

With 159,173,435 interactions, Bell Canada with donate $7,958,671.75 to Mental Health initiatives across Canada!!

When it’s Not Fibro Pain

October 20, 2020

Over the years I’ve dealt with a lot of different kinds of pain. I’ve had broken bones, pulled muscles, sprained ankles, torn muscles, chronic Charlie Horses/nasty muscle spasms, concussions & even thrown out my back. Each of those feels different from each other, right? Before a Fibro diagnosis, they are dealt with appropriately.

I’ve also dealt with pain due to endometriosis, irritable bowel syndrome, CFS/ME, fibromyalgia, osteoarthritis, regular arthritis, kidney stones, gallstones… And each of those feels different from each other. I can even differentiate between IBS pain & Endo on my bowel pain.

I’ve dealth with all sorts of different types of pain..

But once you hit that one diagnosis, many doctors don’t bother looking past it. This happens way to often for those of us with Fibromyalgia & even ME/CFS.. When you go to the ER or even just to your family doctor with a new pain issue, many of us are spoken down to and even dismissed saying the pain is due to fibromyalgia. The one time I’ve have a pain that I said wasn’t fibromyalgia but it actually was happened when I had chest pain. It was costochondritis & while this is a Fibro issue, it’s understandable the first time or three that I freak out & head to the ER thinking heart attack.

Now, I’m lucky. I have had a great support system & have over recent years learned to be my own advocate without being a bitch about it.. I have not experienced this problem much with fibromyalgia. I did however experience this at the beginning of my medical journey in my 20s.

I kept having abdominal pain.. After being put off by my GP once or twice, him thinking it was just gas, he sent me after a 4 month wait, to a gynecologist. She did an exam & sent me back to my GP telling him to send me to a GI doc.

So, GP sends me to a gastroenterologist.. After a 6 month wait there, I was scheduled for a colonoscopy (that was fun..not) and was determined to have Irritable Bowel Syndrome.. After getting it settled down by diet & medication, I was still having abdominal pain. GI tells my GP to send me back to the gynecologist.

I had another 2 month wait to she her agai,n over a year after my previous appointment. She tells me, “you don’t have endometriosis”, because my symptoms were atypical, despite still being consistent with Endo. She did agree to do an investigative laparoscope to shut me up & “just in case” she was wrong. She Was Wrong. I had Stage 3 Endo across my abdomen. So the investigative laparoscoped turned into a treatment laparoscope where she tried to in size and burn off any visual endometriosis cells. She has to go back in 6 months later to get the remaining endometrial cells higher in my abdomen that she missed the first time because she “didn’t have long my enough tools”.

So I learned early on to be an advocate for myself, with support from friends & family. If you feel your are being dismissed, say so. Cuz yes, your pain *could’ be from your fibromyalgia, but it ‘could’ also be something else.

So, my doctor’s know that if something’s not right, I will stand up and say so, not taking no for an answer.


Those who know me personally, would probably say to me, yeah, but what about that issue with your shoulder? To be honest, that is still a work in progress. Now that physio is back available, I’ll be asking my GP for a prescription & get that set up. Yes, it started in March, and I’m just getting to treatment now. But remember, alot of things closed here in Canada for quite awhile, so yeah, it’s taking a little longer to get things dealt with in this issue.

Thinking of Suicide? Please Read!

February 22, 2017

Wanna kill yourself? Imagine this. You come home from school one day. You’ve had yet another horrible day. You’re just ready to give up. So you go to your room, close the door, and take out that suicide note you’ve written and rewritten over and over and over You take out those razor blades, and cut for the very last time. You grab that bottle of pills and take them all. Laying down, holding the letter to your chest, you close your eyes for the very last time. A few hours later, your little brother knocks on your door to come tell you dinners ready. You don’t answer, so he walks in. All he sees is you laying on your bed, so he thinks you’re asleep. He tells your mom this. Your mom goes to your room to wake you up. She notices something is odd. She grabs the paper in your hand and reads it. Sobbing, she tries to wake you up. She’s screaming your name. Your brother, so confused, runs to go tell Dad that “Mommy is crying and sissy won’t wake up.” Your dad runs to your room. He looks at your mom, crying, holding the letter to her chest, sitting next to your lifeless body. It hits him, what’s going on, and he screams. He screams and throws something at the wall. And then, falling to his knees, he starts to cry. Your mom crawls over to him, and they sit there, holding each other, crying. The next day at school, there’s an announcement. The principal tells everyone about your suicide. It takes a few seconds for it to sink in, and once it , everyone goes silent. Everyone blames themselves. Your teachers think they were too hard on you. Those mean popular girls, they think of all the things they’ve said to you. That boy that used to tease you and call you names, he can’t help but hate himself for never telling you how beautiful you really are. Your ex boyfriend, the one that you told everything to, that broke up with you.. He can’t handle it. He breaks down and starts crying, and runs out of the school. Your friends? They’re sobbing too, wondering how they could never see that anything was wrong, wishing they could have helped you before it was too late. And your best friend? She’s in shock. She can’t believe it. She knew what you were going through, but she never thought it would get that bad… Bad enough for you to end it. She can’t cry, she can’t feel anything. She stands up, walks out of the classroom, and just sinks to the floor. Shaking, screaming, but no tears coming out. It’s a few days later, at your funeral. The whole town came. Everyone knew you, that girl with the bright smile and bubbly personality. The one that was always there for them, the shoulder to cry on. Lots of people talk about all the good memories they had with you, there were a lot. Everyone’s crying, your little brother still doesn’t know you killed yourself, he’s too young. Your parents just said you died. It hurts him, a lot. You were his big sister, you were supposed to always be there for him. Your best friend, she stays strong through the entire service, but as soon as they start lowering your casket into the ground, she just loses it. She cries and cries and doesn’t stop for days. It’s two years later. Your teachers all quit their job. Those mean girls have eating disorders now. That boy that used to tease you cuts himself. Your ex boyfriend doesn’t know how to love anymore and just sleeps around with girls. Your friends all go into depression. Your best friend? She tried to kill herself. She didn’t succeed like you did, but she tried…your brother? He finally found out the truth about your death. He self harms, he cries at night, he does exactly what you did for years leading up to your suicide. Your parents? Their marriage fell apart. Your dad became a workaholic to distract himself from your death. Your mom got diagnosed with depression and just lays in bed all day.

People care. You may not think so, but they do. Your choices don’t just effect you. They effect everyone. Don’t end your life, you have so much to live for. Things can’t get better if you give up. I’m here for absolutely anyone that needs to talk, no matter who you are. Even if we’ve NEVER talked before, I’m here for you.


Personal note: I’ve been there where it doesn’t seem like it’s worth it, even tried several times over the years… I’ve been in those shoes, so I have an idea of what’s going on in the head.. it may not seem it right now, but you are loved and if you need someone to talk to I’m here..

It’s not real.. Not for me apparently. :(

June 19, 2009

What would you do? How would you react? If you got told by the person that has been your primary support person for the last 3 + years.. That he/she doesn’t believe you’re sick? Doesn’t believe you’re really *that* tired? Doesn’t believe you’re in *that* much pain? And thinks it’s all in your head.

I was told the other day by the person who I look to most for help & support with my fms & everything else, exactly that. He doesn’t believe me. He thinks I’m either making it up & have fooled all the doctors and specialists, Or it’s all in my head. He said he’s never really believed me since he met me.. He thinks I’ve been lying to the world this whole time, that I have been putting myself through test after test after test, several invasive just to play sick? He thinks I’m a leach on the government rolls because I get disability (and we all know how easy that is to get). That it’s my self esteem that’s screwing me up. He’s thinks that I’ve got nothing of value.. Nothing to offer.. I’m nothing of value.. *sigh*

How much more of a stab in the heart is that?? How much more hurtful can one person be??

I’ve considered the option of leaving before, but not all that serious.. But now,. yes I am giving it serious thought. How can I stay here with this person who I should be looking to for help, but who does not really believe what I am going through is real. I have thought on & off that sometimes he doesn’t get it – but that makes me wonder if he even understand, let alone cares about me at all. It’s heart wrenching.

Welcome !

May 29, 2009

Welcome to my Blog!

My name is Kelli.. But I am also known online as Neon Rose and it’s variations (I answer to the name Neon, IRL).. I am also known, in scouting circles as Koolaid – yes, as in the drink (long story, I’ll tell ya some time)

This blog is about my life, my medical issues and any information I can share thereof.. I have been diagnosed with Fibromyalgia, Endometriosis, Allergies, Sensitivities, Asthma, Irritable Bowel Syndrome (IBS), Depression, Chronic Fatigue Syndrome (CFS/ME), Hypo active Thyroid, Restless Legg Syndrome (RLS),  Osteoarthritis (OA) and a host of other issues that are part and partial to go with the above mentioned. The focus here is going to be mainly on Fibromyalgia (hence the title), but will also include fibro-related issues and Endometriosis.

Why, you ask, primarily on Fibromyalgia. Well, cuz Fibro is the most significant issue at the moment.. My endo is under control, as is my asthma, RLS, allergies, etc.. Also, Fibromyalgia is also the least understood, most misdiagnosed and under treated condition that I have. If I can just help one other person, then, I’ll feel awesome cuz I have helped someone. (Why do I suddenly have a girl guide song in my head? *shrug*).

What aspects am I gonna cover? Everything I can. If you look at my categories you will see I plan to cover many areas of traditional and non-traditional medicines including Eastern medical philosophies, faith, as well as non-medical areas of life. I also plan to cover support (financial & emotional) and daily living and coping.

If you have questions, please feel free to ask.I will do my best to answer.

Note that all my content does not necessarily belong to me, however sources are always listed and author if available, if it is not original content. Please see disclaimer post for copyright information.