I’ve not had any tattoos prior to this year, so I don’t know what it’s like to have any ink done with a body that does not have pain. Honestly because I’ve been dealing with chronic pain issues since adolescent, I don’t think I could have even had the opportunity to do so.
I have 2 pieces done thus far. They are both rewards for my weight loss.
On my upper left arm, a little bigger than I was expecting, is my Scouter Koolaid tattoo I was given the name Koolaid by a patrol of scouts in my early 20s. So, basically is the scouting fleur-de-lis with the Koolaid guy super imposed on top. With the cub sign shown in his right hand.
This tattoo was actually quite painful. I had a hard time tolerating the pain. I was gritting my teeth the entire time but I persisted because I knew it was temporary pain and would eventually stop
On the top of the backside of my right shoulder, I have a butterfly. This butterfly is similar in style to a monarch butterfly but instead of the orange, black and white, mine is coloured inshades of purple and white. It is unique & really cool in that it is almost 3D in nature and you can see the shadow of it behind the butterfly. The text surrounding the butterfly reads “Fibromyalgia Awareness”.
This tattoo was significantly easier despite having more chronic pain issues in the area. For the majority of the work I was able to just sit and relax as he drew on the back of my shoulder. In fact, the upper lettering where I says “Fibromyalgia”, that actually tickled. Go figure There was one spot however that was a problem. Near the end of the work, the artist was adding white for highlights, he hit a flat mole on my back That sent a single big sharp jolt of pain through me. But that was the only pain I had from that one.
The artist, given that these two were my very first two and done right one after the other, he was not only surprised but suitably impressed that I only jumped that one single time. Apparently that is not the norm.
I do have one final one planned as my final reward for reaching & maintaining my goal weight. That one is going to be a collection of roses on my bum/ hip/ lower back in shades of bright pink & purple, maybe blue. The text to accompany that tat is “Neon Rose”, the online alias I have used since I was 16, so long long time ago.
When Lilly passes, I will be getting her paw print on me aswell in commemoration.
On this day we try to spread awareness of three debilitating and chronic medical conditions. I have all three of these conditions & I have to say, they all suck.
Each year on May 12th, we observe International Fibromyalgia Awareness Day. Globally, we also acknowledge Awareness for Chronic Immunological and Neurological Diseases (CIND), typically considered Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) and Multiple Chemical Sensitivities (MCS). This does include other conditions such as Multiple Sclerosis, Addison’s Disease, Lupus, Chronic Regional Pain Syndrome (CPRS), & Irritable Bowel Syndrome to name a few.
Fibromyalgia affects 2-4% of the population. For context that’s up to 13 million of the US population & 1.5 million of the Canadian population It is a musculoskeletal syndrome and causes a variety of symptoms. Common to all Fibromites is chronic widespread pain and debilitating fatigue. Additional symptoms can include:
Symptoms may come and go, lasting a few minutes, an hour, a day, a week, a month, or a year. While there is no cure for fibromyalgia, a variety of treatments and therapies focus on reducing the amount and frequency of pain. They also aim to improve sleep. Therapies such as exercise, massage, acupuncture, and chiropractic care aim to manage symptoms without pharmacological interventions. Prescriptions manage pain, improve sleep, and combat depression, too.
Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) affects ¼-¾ of 1% of the population For context that is up to 2.5 million of the US population & up to 300,000 of the Canadian population. It is a serious, long-term illness that affects multiple body systems. Symptoms of CFSME are severe fatigue, and sleep issues. Additional symptoms commonly include: post-exertional malaise (PEM), problems with thinking and concentrating, pain, and dizziness. Like fibromyalgia, symptoms may come and go, lasting a few minutes, an hour, a day, a week, a month, or a year. There is no cure and no real recommended treatment plans . Individual symptoms may be treated or managed and like Fibromyalgia, they may provide relief for some but not others. Coping strategies, like learning new ways to manage activity, may also be helpful in some.
Multiple Chemical Sensitivities (MCS) is a syndrome resulting from a reaction to environmental factors such as tobacco smoke, auto exhaust, perfume, insecticide, new carpet, chlorine, food chemicals an preservatives. Symptoms can vary extensively and can include:
Headache
Fatigue
Dizziness
Nausea
Congestion
Itching / Rash or hives
Sneezing
Sore throat
Chest Pain
Changes in heart rhythm
Breathing problems
Muscle pain and/ot stiffness
Diarrhea / constipation
Bloating & gas
Confusion
Trouble concentrating
Memory problem
Mood changes
Treatment typically is to avoid the irritant
AWARENESS DAY HISTORY
Fibromyalgia, CFSME, MCS Awareness Day was first observed in North America in 1992 in honour of the birthday of Florence Nightingale.
Why Florence Nightingale?
During in the Crimean War on the 1850’s with the English army, she established the training of women, organizing them to help care for the wounded soldiers, establishing the basis of modern nursing.
During the war while working on the front lines, Florence suffered a traumatic collapse which resulted in most of her life to be in debilitating chronic pain, often unable to walk or leave her bed. Documentation suggests her symptoms to be similar to fibromyalgia and chronic fatigue.
SPREAD AWARENESS
To help spread Awareness of Fibromyalgia and these other conditions please use the following hashtags in your social media:
#May12th
#FibromyalgiaAwarenessDay
#CFSMEAwarenessDay
#MCSAwarenessDay
As the month of May is also dedicated to Fibromyalgia Awareness you can use these additional hashtags
Some of these image are ones I’ve created, and they are marked. Some are not please give credit & refer to this blog at http://www.KelliAEllis.com
I created this image based on other images. if you use this image, please give credit & refer to http://www.KelliAEllis.com TYI created this image based on other images. if you use this image, please give credit & refer to http://www.KelliAEllis.com TYThis was made by a friend for me. If you use this, please give credit & refer to http://www.KelliAEllis.com. TY
so we have finally reached the 31st of May, the final day of fibromyalgia Awareness Month. I know I’ve been posting a little extra and almost exclusively about fibromyalgia this month but but else would I do? LOL
what I would like to thank all the people in my life who support me. I made masks for those closest to me as well as myself. I would like to thank each and every one who wore these masks & I hope will continue to wear them until we no longer need them.
This lad is on of my guy friends whom I am fairly close to, but I was surprised when he said he wanted a mask. Apparently he knows others (including 2 mutual friends) with Fibromyalgia.
Tony.
The only one I made a mask for who I do behave an image of is my nephew cuz he couldn’t find his (not surprising, cuz his mom’s wearing it!) But my sister, her 2 daughters, and my Mom & Dad. I thank my family for their support
Cassie & Kyah, Wendy, Dad and Mom
My best friends and their partners.. I’ve known both Catherine & Gerry since high school. I’m lucky to have maintained their friendships after 30 years. I thank them & their partners. Cath’s masks read “I wear purple for my BFF” & “I wear purple for ME”.
Catherine & Brett and Sara & Gerry
As many of you know, I’m involved in Scouting & I had some of my fellows outer request masks as they know how much it impacts my daily life.. I worked with Rainbow 13th directly for 2 years in Beavers & she is our outgoing group chair for one group. Raksha 13th has worked with me at Cub level for 3 years now& is out incoming Ng chair. She has seen how it impacts me and the improvements I have made over the last few years. Rainbow 1sy, well.. I’ve only been working in tandem with her since Covid hit & we initially amalgamated the groups, but like the bffs, I’ve known her since highschool and we did Venture Scouts together as youth.
& I support me. Some days I have to remember that.
i have 4 masks.. 2 that say Fibromyalgia Awareness, but different patterns.. one that states “I wear purple for my BFF” (cuz my bff has fibro too) & “I wear purple for ME”. Mine, I will have in regular rotation – good thing purple is my favourite colour..
4 different days 4different masks.. & Yes, each has been worn several times over the last few weeks. Very rarely was I not in a fibro mask. & If not, I had purple butterflies!
So everyone who supports someone with Fibromyalgia, on their behalf, I thank you. Whether it’s doing our groceries wearing a mask for Fibromyalgia Awareness or just checking in to make sure we’re ok,, we do appreciate you & your support.
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.
Every morning is a tough morning.
I can sleep all day and still feel like I just ran a marathon.
If I went out last night, I need a day or two or three to recover — its okay, it was worth it.
When i’m tired, let me sleep.
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.
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.
Yes, diet matters, but in flare mode, all bets are off.
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.
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.
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.
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!
Bright lights, loud noise and too many smells can overload the senses and can cause nauseous (or worse) or kick in a migraine.
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.
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.
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.
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.
Some days it’s OK to let my Fibro win. It’s a marathon, not a sprint.
I can get moody. You would be too if you were in pain all the time, be patient with me.
Don’t be surprised if I can tell your mood as soon you walk in the room. My Fibro/spidey-senses are tingling.
My day, week and month are carefully planned to accommodate my Fibro. Only important events & people like you are scheduled.
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.
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
“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’
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.
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
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.
Because of Fibro, some Fibromites get to spend more time with their families than if they were healthy.
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.
Because of Fibro, I’ve become part of a strong, supportive community that reminds me I’m never alone.
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.
Recently, I received an email from Sobey’s Grocery stores in response to my request to be waitlisted for the vaccine.. They said, I was eligible for the COVID vaccine, for the AstraZeneca vaccine. Finally!!
AZ Vacvine
I went & signed up. It turns out the closest location for the shot was in the city a Gerrard & Vic Park. I’m sure there’s not a lot of you familiar with the geography of Toronto but from my home it is approximately 50 km or just over 30 miles ( just under an hour away) to that specific grocery store for my shot. But I was going to be going into Scarborough (East Toronto) anyways because of Lilly’s surgery. I figured I’d would kill two birds with one stone.
My Shot, Thursday
So my appointment was on Thursday, at 11:30am. It was super quick. By the time my brain registered the sensation of the needle, she was already putting it syringe into the sharps bin.So, even if you don’t like needles, it’s not that bad. I stayed the required 15 minutes. No reaction initially other than some moderate nausea.
Waiting n the cubical for the pharmacist to give me my shot
The nausea stayed with me for the day. I was a little tired afterwards & had a short nap which helped me feel a little better. Even went for walk with my sister in the evening.
My Reactions – That Night
By 2:00am the nausea was worse, so much so that I had an empty bucket beside my bed, just in case.
Shortly after that I noticed I was cold. I was eventually shivering despite pj’s and warm bedding. My temperature at this time was 38 & change in Celcius .
My arm was sore, but most people have that reaction. My fibro was triggered and my pain was climbing everywhere. At worst I’d say 5/10.
By 5:00 this morning my body had switched from shivering to sweating. I was also having a headache kick in. I took some Tylenol with codeine and was finally able to get back to sleep.
My Reactions – Next Day, Friday
I was abruptly woken up by my Mom at 10:30am for a temperature check. It was 36.8, completely normal. After checking Lilly & giving her meds (see her surgical post if you are interested), I went back to bed. Fortunately in the morning, the body wide pain had taken a step back and no more shivering or sweating. I did still have the headache, and the nausea but it was not as bad.
As the day wore on I’d flip from chills to overheating, but no temperature. The nausea kept up and I did rush to the bathroom with dry heaves. The body-wide aches went back up by bedtime.
My Reactions – Day 2 Post Vaccine, Saturday
Still has ongoing flipping between chills & hot flashes. Left arm still sore.. Ongoing body aches all during the day.. Still nauseous, but not actually vomiting..sent alot of my time resting.
My Reactions – Day 3 Vaccine, Sunday.
Chills & hot flashes completely abated by the evening and the nausea aswell. Still had body-wide aches & pains.
My Reactions – Day 4 & 5, Monday & Tuesday.
I think by this point I was completely finished reacting to the actual vaccine, whoever my fibromyalgia decided to react to the vaccine reaction. Oh so fun. So by the time I woke up on Monday I was in a lovely little fibro flare that has lasted several days. Only thing I accomplished was the opening & closing of my Tuesday Night Cub meeting.
So, by this point my actual immunoreaction to the medication in the vaccine was done, but not the end of this saga of my vaccine.. Read here for more on this story.
As of 2016, new criteria for the diagnosis of Fibromyalgia were determined. The previous test was a trigger point test of 11-18 points reacting gave a diagnosis of Fibromyalgia when not other condition explains it. This is no longer considered a valid marker for Fibro though many doctors still use this outdated model.
According to this, my WPI is 10 & my SSS is 8. That’s one criteria down. Symptoms have been around for decades. Dr Bested did a full panel of tests, needing 2 separate visits cuz of how much blood they required for the tests. All it found was that my vitamin D was a little low, but normal and vitamin B12 was lower than normal – but I knew that already.
So by this criteria, guess what!?!? I have Fibromyalgia!! Surprise!!
International Awareness Day for Fibromyalgia, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Multiple Chemical Sensitivities
Today, May 12 is International Fibromyalgia Awareness Day.. also known a Fibro, FM & FMS, the rigging for today is Purple.
Today, May 12 is International Chronic Fatigue Syndrome / Myalgic Encephalomyelitis Awareness Day. Also known at CFS, CFS/ME, ME/CFS & ME, the ribbon for today is Blue.
Today, May 12 is Multiple Chemical Sensitivity Awareness Day. Also known as MCS, the ribbon for today is Green..
CFS/ME, Fibromyalgia & MCS Awareness Ribbons for May 12th
Fibromyalgia 
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