Allodynia

Allodynia – That’s the technical term for feeling your skin 24/7. My skin is so sensitive that a gentle breeze can trigger a pain response on a bad day. Pants are torture, but skirts are worse. I hate leggings because they make me constantly aware of my skin. Which I assure you is not nearly as much fun as it sounds.

A quick anatomy lesson for the integumentary system (hair, nails, skin and sweat glands) your skin is by far the largest organ you have. It’s not just a meat sack holding your body together. There are billions of nerve receptors in your skin. They are designed to bypass the rational mind and are hardwired into your subconscious or reflexive mind. This is why you move your hand away from the flame before you even realize you’re burning. There are about 2 billion or so nerve endings in the outermost layer of skin. More in the under layers, the hair, sweat glands etc. They are there to alert us to potential danger and to alert the brain that we have been damaged.

You have different nerve receptors for different things. Some are ticklish. Some detect change in Temperature. Some itch. And some say OUCH!

Now imagine if something happened and suddenly all of the receptors start telling your brain OUCH. Meaning that breeze causes pain, the brush of your hair across your skin causes pain, warmth/cold causes pain. Sound vibrations caues pain. Clearly this is a problem with the wiring. But they don’t know what it’s caused by.

When my skin hurts I don’t want delicate gentle touch, I want specific, firm and with intention touch. I want clear and obvious sensation (think stingy and thuddy rather than feathery or ticklish)

Author – Unknown.

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I do get this myself. Mine is thankfully on & off . Like the OP, I prefer firm contact, but I also need to know it’s coming. It’s easier to just have no contact at all tbh.

It’s weird. If I’m sensitive with this, a hair that falls out of my head & lazily makes its way down my back or my arm can be excruciating at worst, mildly painful at best.

I even have a “Don’t Touch Koolaid” Necker for Cubs. Meaning they know they can not touch me when I’m wearing it. They don’t understand why – just that it hurts me alot if they do on those days. Fortunately, I don’t have to wear it often

Christmas Is Busy For Me

Personally, for me, Christmas is probably the busiest time of year. Plus with personal issues that I’ve been having with different relationships, I haven’t been able to focus here very much.. so my apologies for not posting… Again…

Just to give you an idea. Monday was dinner out with a friend I haven’t seen in a coons ahe. Tuesday I have errands all afternoon & a cub planning meeting in the evening.. Wednesday is the Cub year end meeting, a social gathering & baking both before & after those. Thutsday I have to organize the baking, getting some ready for me to post as well as for friends this weekend. In the evening, I’m off to my sister’s for hair & a walk with the dogs. Friday, weather permitting, I’m getting the headlight fixed then I’m heading out for a social event with out-of-town friends I have not seen since Labour Day. Saturday is a coffee date (Whoo hoo!!) Sunday is soccer.. I still need to do groceries: normal groceries, Christmas dinner groceries, cookie baking groceries.. then, more baking as our family Christmas is on the 23rd.. plus wrapping presents for Mom, Dad, Sister & her family & a friend who I exchange with for more than just cookies..

So, yeah . Busy….

And I’m probably missing stuff in the schedule..

Plus I need to fit in exercise, a hot tub or two or 6, plus other personal self care & put up my second tree.. & make some ornaments..

So, ALOT goes on a Christmas..

First Cub Meeting Back

For anyone new to my blogroll, I am a Cub Scout Leader in the Scouts Canada program.. Girls & boys aged 8-10/11..

Because of my mental health issues, I had decided that I would not participate in the first few meetings cuz I didn’t want to expose the kids to me potentially having an inappropriate emotional outburst

So, other than parents who don’t read emails that say “Hey! We’re not at the church this week! Dress for outside!” It was good..

The three or four who didn’t dress appropriately, well, they got soaked, cuz it was raining. But in the email I warned them!! Let’s hope they read the next one cuz they gotta bring stuff.. Stuff from the hike.

We didnt loose any kids.

I think I surprised then with the jungle closing.. While Johnathan, a senior Cub, had helped Scouter Ryan, apparently they fell short of my enthusiasm.. lol.

So next week we are at the church making airplanes & painting rocks.. that should be fun. 🙂

How Am I A Functional Cub Scout Leader

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 Koolaid🤣.

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….

Cub Camp – The Aftermath

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

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!

Allodynia

Allodynia is a type of pain that many of us with Fibromyalgia have. It is basically a extreme sensitively to touch. People with this can have extraordinary pain from simple every day contact like combing one’s hair.

My Allodynia

I don’t know if my situation is unique, but mine seems come and go, and it can vary depending on the amount of pressure.

Some days I’m golden. I have zero issues. Other days, I will shed a hair from my head and when it falls on to my unsuspecting arm I am in excruciating pain. Other times I with just come in light contact with something and the pain is agonizing, but I can have firm contact like a hug and there’s nothing. I don’t get it.

There appears to be no rhyme or reason as to which circumstances will crop up on any given day. Fortunately, it does not change from one to another on the fly. I’m more likely to switch from one to another on different days. So on one day I’m good, but the next day it hurts to brush my hair or even my teeth (yes, it can impact my gums).

I have found that the most noticable instigator of this type of pain is from a hair touching my skin, either stopping, caught on hard or leg hair, or feeling it as the single hair strand bounces on my skin as it falls. Because of this, I tend to brush or comb my hair fairly frequently. My sister was surprised when I mentioned that I will brush my hair several times a day, vs the once or twice she brushes her hair. I also tend to pull my hair back or up to prevent loose hairs from falling.

The other way it frequently hurts is a casual touch. A light hand on the shoulder. Someone brushing by me. My mom no longer touches me because of the number of times I have flinched unless I have asked her to, like rubbing A535 into my back. My sister is the same. My neices & nephew tend to forget. My intimate relationships don’t seem to be impacted as much cuz those touches tend to be more firm.

The hardest part is incidental touches by others who don’t know me as well. I am a leader in scouting. I’ve had youth come and touch my shoulder from behind so I’m in prepared, or a hug from a child who forgets they aren’t allowed to touch without consent.

There are also times when I know to expect contact. A perfect example is another scouting situation. As the ‘head’ leader (usually called Akela, but the Scouts named me Koolaid before I went to Cubs) I do opening & closing. This includes the challenge. I yell “Pack! .. Pack Pack Pack!” and the youth come running to challenge me, as I am the head wolf (hence wolf cubs). They come to a tight circle around me, but every meeting someone will run too far or have a hand out or jostle with another youth & contact is made Because I know it’s likely coming from somewhere, I can prepare for it and it’s less of an issue.

Lately, it doesn’t seem to be as much of an issue as it has been in the past. I don’t know why. Is it the improvement in my overall health? Is it my weight-loss? Is it than my activity level has changed? Is it that my pain levels had dropped? Is it a change in medications? I have no clue.

if you experience this condition, how does it impact you?