Archive for the ‘Fibromyalgia’ Category

Crash & Burn

August 12, 2022

The August long weekend was spent at home, the first time in several years, even doing covid. Typically I would be up at bff’s cottage, but she wanted the weekend starting her vacation to just be her & hubby..

Instead, I spent it in the GTA. Thursday night I went walking with my friend Tracy as my sister was at the cottage on vacation. We went 5.18 km according to my fitbit. Pace was 7.8 km/hr which is pretty good. Average speed for someone our age is about 4.5km/hr. So a good clip.

Friday was a quiet day, but Saturday started with my mom having a hissy fit about all my stuff in their space, so I spent the afternoon hauling any of my personal belongings & any cub supplies I had from the garage and into the backyard , either to my indoor space or my father’s shed. Between 2 & 6:30, my fit bit recognized three instance of exercise. 2 were classified as walks, but one was registered as sport. This tells you how hard I was working. That evening I went out to a bar with friends. Some were new to our group, so we had some ice breaker activities & lots of chat, getting to know new people. Then off to the dance floor until I left shortly before 1am.

Sunday registered a walk on my fit bit at 12 and I don’t remember what I was doing.. likely at noon I’m still dragging my ass outta bed,, esp when I wasn’t home until 2.. ( I realized layer it was 12 midnight & I was dancing).. I then took the pup to the dog park and we took the longer path. I did yoga for about a half hour & change. *Then* I went to soccer & I was exhausted by the end.

I woke Monday morning, thinking “Hmm.. I’m not too bad.” Then I moved. Boy was I wrong! 8/10, easy, & pure fibro pain. Not alot anyone can do anything for that.. Plus ongoing muscle cramps in my legs on & off until I got some magnesium on Wednesday, which helped..

So I spent the holiday Monday in bed, same with Tuesday & Wednesday other than a painfully slow walk, barely 1km/hr. I was however feeling a bit better each day..

Thursday was spent at my sister’s hanging out at her pool & started working on a project she wanted to do this month. Got in a couple of short walks, minimally faster than the days before.

Saturday & Sunday we also spent working on the project with multiple pool breaks .. I did go out with friends on Saturday which was nice. Then I again went to soccer on Sunday – am I a glutton for punishment or what?

So now we are one week later, pain levels still jumping at a 4-6/10.. depending on the time of day.. Sunday afternoon I was at a 4.. Probably why I went to soccer.

Monday was about the same, pain-wise & still working on my sister’s project, but finally got a decent amount of work done on with this project.

to be continued…

How Am I A Functional Cub Scout Leader

July 12, 2022

Some days I’m not & others I push through to the detriment of .my health.

A Bit of Background

I started in the Girl Guide program at age 8.. I stuck it out earning my Wings in Brownies, my All Around Cord in Guides and most of my Canada Cord in Pathfinders before I got pissed at my leader for not giving me my badges. I was a junior leader for a year and then switched to the Dark side.. lol..

I joined Venturers at 16, continuing into Rovers and joining the leadership ranks as group committee, Scout Leader, Venturer advisor, Service team and finally as Popcorn Fundraiser Coordinator Then my health started to get really bad, I was no longer able to function in Scouting in any capacity & took a 10 year break. After going through hell with my health & my relationship, I returned home and to Scouting

My nephew wanted to be a youth leader with Beavers, so I joined with him. All I did was come to meetings & help. After 2 years he wanted to move up to Cubs, so I moved up with him. My first year was similar to what I did with Beavers, but our contact Scouter didn’t do planning very well and I wanted to expand my wings a little as did one of the other leaders (Raksha) did too. We set up a planning meeting. Akela told is last minute that he wasn’t coming which we were not surprised with cuz he’d only done a few meetings the year prior. So we started planning & an hour later Kaa, who was running our previous week to week program, called & let us know he was moving away & leaving the pack. Thanks for the notice guys.

So, Raksha and I took over the pack. Initially she was Contact Scouter, but I was the one interacting & teaching the youth the most. While it was exhausting, it was rewarding.. & just after our winter camp and spring break, COVID hit. Virtual took off alot of pressure in some aspects, but Raksha & I made a good team, comimenting each other’s strengths. We made it work. It took us 2 weeks to re-evaluate, but we kept going (that push is a whole different story) doing virtual then hybrid , now back full-time (for now) in-person. Unfortunately, we have amalgamated 2 other packs, dissolving them cimpletely. We are currently linked with another group working together as one pack

How I Cope.

I do not work because due to my health I can not be consistent or reliable. That does help. So Tuesdays are spent relaxing, with prep for meetings done on the weekend prior or the day prior.

We have very open communication & have a Facebook chat group for all the leadership. This is used to share information clarify details and to make sure the paperwork for each group is consistent when submitted. It also allows us to keep track of each other like if something comes up & a leader can’t make it, it’s posted there so everyone knows.

This year we have 6 scouters, 1 youth leader, and have grown to about 20 youth. Next year we will lose Raksha, & the youth leader but between the two packs, we will gain 3 Scouters and possibly another youth leader. So there is alot of support and shared responsibilities which makes things so much easier.

My key role is to run the meetings and make sure everything runs smoothly. This starts before opening and ended after closing The scouter who has this role usually has the name Akela. But, our Akela is named Koolaid­čĄú.

My specific duties include making sure we have the proper equipment and supplies for the meeting. Flags, for outdoor meeting are stored in my garage or my car. Lol. Different leaders may be running the activity but I make sure we have organized what is needed . Sometimes this requires requesting donations, or actual prep work or some organization. I make sure this is in place for the meeting.

The running of activities is shared between us, so I’m usually in a support role during activities I could run almost the entire program, I have the skills, and knowhow to do so, but that would be too much.

I run the meeting At our meeting place (the other pack has a location we use too) or outdoors, I have the cubs set up & take down the flags & totem. I run the opening & closing. I organize the other scouters in their support roles.

The kids see me, despite whether they are registered with my group or the other, as the contact point. For example at Cuboree last week, one of the girls in the other pack came to my tent, passing 4 other leaders tents, 3 of whom were from her group to get help from me. So I’m in the middle of changing & I hear “Koolaid, I’m cold” That was an easy fix – I put her child sized summer bag inside my extra adult sized indoor bag. *Poof* problem solved.

On days where I am not well, I am honest with the other leadership. We have an open & ongoing Facebook chat, so I can let them know. If necessary, make arrangements for anything I have for the meeting to be picked up & to give specific instruction about the meeting. I’m upfront with the youth as well – even have had “Don’t touch Koolaid” nights when my Alloidynia acts up.

Camping with Cubs.

So I’m.sure you are dying to know how I go camping with 20 kids. Well, this camp we actually merged the other Oshawa group with ours for the weekend, so we actually had up to 24 kids at any given time. But we also had additional leadership, 7-8 leaders at any given time.

My tent: I brought my own personal tent that I know how to set up, situated beside third year youth, hoping the younger kids will hit up the other scouters before me (& we know how well that worked). I have a double high queen mattress with a portable power source to run the pump. I have some actual bedding for the mattress. So I can use my sleeping bag more as a blanket, but also have a spare sleeping bag, a blanket & my camp poncho with extra sleepwear should I get cold.

We take advantage of the organizers running a group kitchen so we did not have the stress of cooking & cleaning up outside. Now with winter camp, in a cabin it’s easier to arrange cooking, eating & cleanup. At our last winter camp, our youth leader said he was an early riser, so we gave him kitchen duty both mornings so Raksha & I had some extra time to get ourselves moving

I do not drink coffee, nor am I a fan of tea.. So I’m sure you are wondering how the hell I manage without caffeine. I don’t. To camp I will bring 2 – 710mL bottles of Coke. One for each morning. So I get a slow regular infusion of Coke during the morning, but as soon as that is done, I switch to water, or Koolaid (about 3 calories) for the duration of the day. While I do enjoy hot chocolate, I’m picky plus it’s only offered at campfire. I do not need more caffeine at 10 o’clock at night before bed, bit I will take apple cider if offered. Since I’m exhausted from the day’s activities, I don’t need my body to be artificially stimulated to stay up later than need be.

I also wear ear plugs. Some of the kids get chatty at night and if they aren’t bothering the other youth I can just pop the plugs in & go nite nit.

To wake up, I set my alarm for a half hour before I need to be up for my body to adjust & to take any regularly required & any additionally required meds so that when I’m actually getting up, I have these helpful meds in my system.

More to come in the future….

Tattoos with Fibro

July 5, 2022

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.

My Mental Status

June 21, 2022

** WARNING: Does contain some personal sexual content or references **

If you actually know me, some of this will probably come as a shock

I’m done. I can’t do this anymore.

  • I have no real friendships anymore, except for maybe Gerry & his partner. Catherine & I dont even talk to anymore, nor does she reach out to me. Her b-day present was for me to take her for a night out, a girls night – that was almost 3 months ago
  • My new friendships are.. well.. I dunno what they are. I just feel I’m being needy with them.
  • My cub pack has become more stress than enjoyment & I am super glad we are done for the summer after tonight. I’m not even sure I want to do even the one event/month we discussed.
  • I have very little interest in the 5 different Kik groups I am in &: administer. I’ve taken a break from Kik since Thursday. We’ll see what happens there
  • My family has no clue what’s going on My walks with my sister tend to revoke around her life both in timing & discussion. My parents seem to have no regard or respect for me as a person. My brother, and his family, is a non-entity in my life.
  • My ‘relationship’ which was a friend who benefits kinda thing, has better communication, granted, but all it seems to be is a fuck at his convenience or a ride to work when he needs one .
  • The D/s ‘relationship’ I have is not really doing anything. All I do is say good morning & good night. What is the point in that?

Honestly? Whats the point?

No. I am not suicidal. I am not planning to hurt myself in any way nor terminate myself. But I just have no joy, no enjoyment and no love my life. Plus no one actually reads this. So really, why bother.

I think I’m just gonna stay by myself. Stay in my apartment and not really do much. I’ll still do walks & soccer with my sister and keep in touch with Gerry. I’ll connect with my new friend Jenn from time to time. But beyond that, there’s nothing. & I really don’t care, cuz I’m done.

Cub Camp – The Aftermath

June 17, 2022

So I did do cub camp I wasn’t feeling great, but I ended up doing it. The kids had a blast I’m still recovering.

So, as you can see, it was a very physical weekend. Both Jenn & Wendy are runners & Cecile is one of my other Cub leaders. And I out paced them all. I I am still recovering.

I am hurting I am reeling. I have been physically sick. I am exhausted. I am mentally unwell. I don’t know if I can do this again. I don’t even know if I can camp at all again.

I dont know if I want to.

Cub Camp with Fibro – First camp after COVID

June 10, 2022

This weekend is Cuboree, which is our first in person overnight camp since February 2020. This means most of our kids have never camped in-person as a Cub. Of 21 youth, we have 2 who have.

Normally each group would be running independently with their own food and kitchen and supplies and such. Fortunately the Cuboree Committee decided to offer a meal plan The Scouters who are in the participating groups have planned the menu, supplies, equipment & food. The kitchen is being organized & run by council level Scouters who have no group . From us, they only require one Scouter from our group to help with food prep. Not me! Yay!

Normally for camp we would plan the menu, organize our equipment, shop for food and supplies as well as having food preparation done with the youth. We have, fortunately, none of that this year. We’ve been flying by the seat of our pants this year’s so I just gotta say Thank God The most prevalent leaders both have Fibromyalgia & the related cognitive issues so it’s been an interesting year.

& its supposed to rain on Saturday. *Sigh*

my apologies if this doesn’t make sence cuz it’s a busy week & my brain is now fried & I still gotta run the camp!

How Is Fibro Reliable

June 3, 2022

The are only two reliable things about Fibromyalgia and chronic pain in general

  1. Our bodies are pretty much always in pain. All day, every day we are in pain to some extent. I don’t think I’ve had a pain-free day, other than heavily medicated, in at least 2 decades.
  2. Our bodies are reliably unreliable in regards to this disease. Consistently inconsistent.

Pain Levels Change

These change, frequently. They ebb & flow.. We can from a 2/10 one day, but the next a 5,/10, then a 3 then a 6,.. Even worse, they can shift hour by hour, especially when it bounces. Goes 5 to 6 to 5 to 6 to 5 to 4 and to screw me up, back up through 5 to 6 again.. Some of our pain is predictable by pattern like weather changes & over exertion, but not even necessarily then..

Now, jumping at lower levels like 1, 2, 3, or even 4 aren’t so bad.. but bouncing at the higher levels is alot harder on the body .

Duration Changes

The shifts in our pain levels can bounce from hour to hour.. They can be sustained for a period of time. Sometimes hours, days, even weeks.. I’ve even stayed steady at a 3 level pain level steady for months at a time. And I have seen no way to predict how long it will last I’ve had the same thing cause a shift and each time the shift (be it up or down) has lasted different lengths of time.

Frequency Changes

Our pain levels, as you can tell from comments above can last a different length of time each time. Sometimes minutes (but that’s usually an outside source!), Hours, days, weeks & as mentioned even months.

Triggers Change

I’ve noticed that sometimes I will get triggered by an activity one time, but not the next. On the reverse, something else that doesn’t normally trigger me will. Inconsistency. Shifts in the weather are a good example. We recently shifted to rain at the end of last week and I got hit hard for a bit, up to a 6, but slowly was able to manage it back down. But the inverse, the week prior we got hit with a similar shift to rain, but there was very little impact to my body.

Timing Changes.

When our pain will change is in no way predictable. Since childhood, I’ve had a tendancy to be better or healthier in the evenings. It’s to do with my circadian rhythms, I think but everyone has that Other than that, time of day has very little impact. There are days where I will suddenly wake in excruciating pain because of the pain. There are days where I will wake naturally & when I make that first move, Whammo! There are days when suddenly, mid-day, pain shoots up. There are days where I woke well and by the time dinner rolls around, I already want to curl up and ignore the world to deal with how bad I feel.

A Side Note – Third Consistency.

In writing this entry I keep noticing that the reference to changes emphasized to the increase. That’s probably because the increase is bad. But I also noticed that I’ve never had the thought, as I’m writing & editing about sharp drops in pain.

  1. Pain can rise quickly, but without intervention, it always drops slowly

May 12th

May 12, 2022

Today is May 12th..

Awareness Ribbons

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.

FMS – Fibromyalgia Syndrome

CFS/ME – Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

MCS – Multiple Chemical Sensitivities

May 12th is Coming

May 10, 2022

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.

Awareness Ribbons

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:

  • anxiety
  • depression
  • migraines/chronic headaches
  • irritable bowel syndrome
  • irritable bladder
  • insomnia
  • hypersensitivity to cold/hot
  • swelling
  • fibro fog (inability to concentrate/focus)
  • difficulty remembering
  • numbness
  • stiffness
  • decreased energy
  • noise, light and odor sensitivity
  • skin sensitivity
  • See a more extensive list here

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 ┬╝-┬ż 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

  • #FibromyalgiaAwareness
  • #FibromyalgiaAwarenessMonth

 

No One Bothers

May 8, 2022

I’m 99% sure that no one I know actually reads this blog. I get no feedback from anyone outside of occasional comments from other WordPress bloggers. So I’m not even sure why I bother. I mean does anyone a tally read this or get anything from it?

And today was a shitty day..

Someone who I thought was a friend, turned on me this morning. I had told this person some personal stuff over the last several months and had explicitly said that it was personal and confidential and to keep it between us. Well this person turned around this morning, took what I said, twisted it, morphed it, changed it to their own liking and told it to someone else a fact. The only information that was correct were the people involved… Fortunately, this person did not realize that the person being told was actually another friend of mine which is why I found it quickly.

so needless to say I’ve been upset today. I have reached out to friends who I thought would be willing or able or even interested in supporting me. I tried to reach him out to my best friend but she’s busy this weekend and next weekend and the weekend after I tried to reset the Skype and seeing because he’s actually the other person who was referred to and he’s too tired too sore and needs a ride to the work in the morning so we can’t even hang out. I got blown off for the other ghost friend because they were just too busy. I don’t have a lot of friends that I can talk to

I think it’s just realization that’s got me more upset than what this person said & the fact that they broke my confidence.