You Can’t Do Everything, But You Can Do Something.

With Fibromyalgia and other chronic pain you can’t always do everything you want, and we will always be limited in what we can do, but there is always something you can do instead – always an alternative.

While you may not be able to go to the amusement park with your friends/ family because the rides will hurt too much or because you can’t be on your feet all day or maybe it’s an all day thing that you can’t do or for whatever other reason, there are other things you can you. Maybe you can go mini-golfing with friends instead. Still a social activity, still something physical, still something fun and still hanging out with your friends. If that’s still outside of your wheelhouse, try just going out for a drink even just coffee to get out and be with those you love. If you are bedridden, why not a virtual chat?

You can apply this to all other aspects of your life. Certain things you can not do and may never be able to do again, but there are always things you can do.

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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.

Stress Impacts the Body

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.

Stuff That Doesn’t Mean We’re Okay

Posted on February 28, 2017 by MyFibroTeam

Life as a “normal” person is turned upside down when suffering from & living with chronic illnesses. Often these conditions are invisible. This can cause many to not understand and not believe that you’re as sick as you claim. They have to realize the despite the image we may project, we are in pain Every Single Day.

Then there’s the Catch-22.. Should I put forth an effort into my appearance when I miraculously do go out to look ‘normal’? Should I show up looking as bad as I feel? Or should I even bother going out? It’s a tricky thing — trying to live normally when your life no longer is. People tend to be surprised when we post a well-articulated paragraph on Facebook, have a good laugh, talk about things other than sickness (apparently lately ive been talking non-stop about Cub Scouts), write a highly researched, factually correct well written blog post, or bigger things like going on vacation even if it is just to go up to the cottage.

It is sad that we need to point out these things. It has hit many of us more than once that appearance, timed-just-right clarity of thought or momentary positive mood seem to adjust the perception of those around us creating more doubt in the truth that we each are really very, very sick.

So to that end, Take into account that while we may do things one day, these activities are not necessarily our norm, or it is something we have planned for well in advance. Review this non-exhaustive round up of things that do not mean we’re lying and actually okay:

1 – Articulation/Ability to Communicate Well

Admittedly this is currently one of my prominent disabilities, impaired cognitive function. However, many others can found themselves in the middle of a conversation in a rare moment of a clarity & articulation. And even myself even more rarely. These are the times where we have clarity of mind, excellent though process and the ability to communicate well. . In these moments, we are not communication like someone who is ill. It impairs the idea that Fibromyalgia and many other chronic disease do have cognative impairments.

i have actually spoken with several others with fibro who are highly cognizant in the change of their levels.. Personally I’m pretty sure my IQ has dropped at least 20 points by now, if not more.. In my mid-20s, I had an IQ of 180, thats hitting genius level. I haven’t had access to retesting, so I dont know 100% sure, but its pretty obvious to me.

2 – Laughing and Smiling

Apparently, those of us who are sick are not allowed to be happy, be joyful and positive. Yes, we are in pain & have memory/cognative issues, are drained & exhausted, have issues with sleep and deal with mental health issues, so some think it would get us down and we would not want laughter. In actuality, we need it the most because it feels good.. Smiling and laughing have little to do with someone’s health or pain levels. Those with chronic conditions have become strong from all the suffering they experience, they can still laugh and smile while in pain, which says not that the pain is low but that the need for relief is high.. Additionally laughing with others releases endorphins in the brain and it activates the release of the serotonin, both of which are homegrown feel-good chemicals which can only make us feel better.

3 – Getting Out

Being social is something we need to do. We can get both depressed and anti-social due to our chronic conditions. Some go “all out” as far as appearance: hair fixed, makeup, jewelry, and a dress. But I’ve never been one for being ‘dressy’ so when I go out I tend to be in jeans & a nice top. I’m not going out to impress, I am going out to have fun & enjoy myself.. But, I do tend to dress a little more sexy & with make-up when going to a club..

Some go out frequently. Personally, for purely social purposes, I go out once a week, maybe twice (without covid) . But, I also go out for Cub Scouts weekly which is different than social but is still getting out. I also get exercise – I walk weekly with my sister & our pups. We end up talking the whole time. I have also recently joined an exercise group that meets weekly which is also both social, but also exercise. Unfortunately, with my bff living out of town, & her also having fibro, we dont get to actually see each other that often even tho I have a key to her place.. I’d probably go out more if she was closer & she wasnt so busy with work..

So while we can & do get out, its not always a reflection on our health level. Sometimes we need to make accommodations. I’ve gone out to a bar, medicated on narcotics, to be with friends. (No, I wont drink) I’ve gone to Cub Scouts Day Camp the day after an unsuccessful ER visit, looped up on muscle relaxers & anti-inflammatories or MMJ. I had to go – I had half the equipment *&* the itinerary. Dont worry, there are other leaders because if I’m medicated, I don’t count for ratio. I’ve also usually had either a hot shower or preferably, a hot tub, when available, after almost any type of workout to minimize and even help prevent any residual issues I might have the next day or two. Unfortunately, there are still many times that I still need to cancel plans with scouting, friends, family & intimate relationships.

4 – Technological Activity

Technological socialization is all a lot of us have, especially with COVID. We tend to find typing on a keyboard or on text to be almost always easier. With the hermit life many of us live, we might also avoid telephone conversations because in & of themselves they can be stressful & exhausting. So when my whole body feels like death warmed over, but I’m usually more able to move fingers either on the laptop of cellphone. While a “activity” in no way suggests any other type of activity whatsoever, many people assume that because you are participating online that you are fully functional. Sometimes we express ourselves via social media just to stay sane.

If I post something non-health related or — shocker — something happy on social media or my blog, I wonder if others see it as me being “well,” which is never the case. Our illnesses are always, always there, even if we’re not talking about them at the moment. No matter how much we wish to ignore them, we would still prefer to make them go away.

5 – Announcements that Imply Activity

Many of us are creative people in some format even if is just colouring.. Due to COVID, many people have added extra creative outlets over the last 2 years.. But every new pursuit that is public in any form makes others wonder if, as mentioned above, people see those pursuits or accomplishments and think, “Oh see, she’s doing well.”

But you need to understand: I am on disability and I have no “real” job. My life revolves around creative outlets, medical appointments, cub scouts, health & wellness, Lilly, family, friendships and my social media & Blog. With my very messed up sleep schedule, I do dishes and laundry when I can, and attempting to keep both my pup Lilly and myself fed. Seriously. All of that is my every day. And as little as that seems to be, to my body, that is a whole freakin’ lot. And it gets overwhelming, and some days I can’t even do half of that.

But some days — or nights in my case — are better than others. And that healthy girl who lives buried in me somewhere is begging to come out and create, and sometimes I just have to listen. So when I post about the awesome stuff my Pack is doing, share images of my latest painting project, talk about my love of soccer, add to my Varage Sale store, or am chilling up at the cottage for a few days, all this is done either on a good day, or only take a portion of my day, but is the only activity.. What you see are ‘snips’, brief moments it time, a small glimpse into the parts of my life I want to share. And even then, some of those can be done while still laying in best, resting my body, but still having an active mind.

We are never fine. Whatever assumptions you make based on how we look, how we move, what we do, or even what people “think” we can do, the only thing safe to assume: we are always worse than you think we are

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The original post was first published here, While I have kept some of the content, I have also made multiple changes with my own feedback, comments & experiences.

The original author Kacie Fleming has learned about health and treatment options into the nearly six years since being labeled with fibromyalgia. She lives in North Carolina with her husband and spends her time working on her handmade jewelry.

Anti-Mask & Anti-Vax at the Salon

Recently, i posted about my hairdresser & how my appointments with her are relaxing.

Well, on the Saturday prior, my bff got her hair done (same stylist). Apparently, the tension could be cut with a knife.

Monique had commented away from work that she does not agree with anti-maskers or anti-vaxers. Her co-workers did not appreciate it considering that all the rest of the staff in the salon were unvaccinated and had no plans to get vaccinated. They also we’re not wearing masks in this place of business. So this led to a very uncomfortable silence with her co-workers.

^{I am Against anti-maskers & anti-vaxers. They are putting us *all* at risk.}

Fortunately between that appointment and mine she was able to find a new hairdressing home. Her new salon that she is at is much more bright, much more open, much more space for social distancing and each stylist had two chairs so that they could alternate so that they always had a clean chair available.

So while I still support Monique, I no longer support Heads Up Hair Salon in Oshawa. My business has switched to Bounce Salon and Spa in Courtice

i am glad my stylist is more concerned about her clients & their safety over a paycheck.

Fibro Sucks! But My Friends Don’t!

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.

^{Rainbow 13th (Charlene), Raksha 13th (Jen) & Rainbow 1st.(Jenn)}

& 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.

^{Thank You!!}

Myth Debunked II of VI

IT’S AN UMBRELLA TERM

Yes and No.. Referred to as both a ‘wastebasket disease’ and ‘umbrella term’, fibromyalgia is often seen as a catch-all for symptoms that don’t fit other conditions and can’t be easily explained. Seeing fibromyalgia as a trashcan diagnosis links with the assumption its not a real condition in and of itself.

Yes

Fibromyalgia encompasses a myriad of symptoms, though many people also have additional diagnoses to account for other problems they’re experiencing. I don’t experience fibromyalgia in a vacuum; I also have CFS/ME, Osteoarthritis, Joint arthritis, Depression Hypothyroidism Endometriosis, IBS and Myofascial Pain Syndrome. and so on. I was diagnosed with fibromyalgia in 2006 by a rheumatologist who said I had “Symptoms consistent with Fibromyalgia” was further confirmed with the trigger point test. I even had to correct a doctor who didn’t know exactly when the points are. As a patient of Dr Bested at the Environment Health Clinic and eventually her private practice, she had me running tests out of the wazzo. The results just confirmed yes I have fibromyalgia. I was also ‘diagnosed’ with CFS at that point, but I know if been dealing with even longer than fibro.

No.

Because fibromyalgia can’t be objectively tested and measured, it’s a challenging diagnosis for many doctors to accurately reach and it’s made harder still when healthcare professionals are either sceptical, unsupportive or totally disbelieving of either fibromyalgia itself or the symptoms you’rel presenting them with.

Although it can involve various symptoms, the current list I’m aware of for possible symptoms is over 300 long. Any of these can be experienced differently by each person.

Fibromyalgia is a distinct condition. It may overlap with other illnesses but classic symptoms are still typically prevalent.

Be Cognizant of Your Behaviour.

I’ve mentioned this before and some may not be clear with what I mean. I’m not talking about being rude or nasty, but that is unacceptable aswell. I’m talking about the things you are not subconsciously aware of.

Touch.

^{Casual touch can be excruciating}..

This is probably the biggest issue. People touch people. It happen. Even when sometimes you are trying not to. Like on a crowded buss or subway car, especially during rush hour. There’s also touching that you may not be aware of. An intended gentle affectionate touch like a hand on the shoulder could easily cause excruciating pain. While you can’t help the contact on a transit system, you can be aware of how you express affection to someone with Fibromyalgia or any other chronic pain condition. The easiest way to know is to simply ask.

There are times when you will forget. My mom forgets and I’ve had fibromyalgia for over 20 years & chronic pain for another 10 before that.. So if you forget, if you remember as your doing it or right after, apologize. If they mention it to you later, apologize. If they don’t accept your heartfelt apology, then they are just being jerks. But if they don’t comment, then either you likely had very little impact, or they just don’t feel comfortable to discuss it with you. Only you’d be able to tell.

Scent.

There are many scents people react to. Anything from expensive perfumes to little Jimmy’s upturned stomach. Many people with Fibromyalgia, Fibromites, do react to various smells may of them synthetic. As a result we generally can not be around the source of a scent.

^{Longing Perfume. My very first non-allergy reaction to a synthetic substance.}

Perfume, even the expensive stuff is an excellent example. While you may think you are smelling like the bee’s knees, but in fact you could be harming someone else’s quality of life. Other examples include moisturizers, bath products, tobacco smoke and laundry soaps/fabric softeners. Reactions are similar to an allergic reaction and while not anaphylactic it can cause anxiety which could result into a panic attack. So if you must make yourself smell ‘pretty’, Please use a light hand cuz the person with fibro who rides up on the elevator with you at work, would very much appreciate it.

There are some more natural scents that tend to both us as well. I am fortunate that I don’t react poor to natural scents, except onions but that may have more to do with my aversion to onions.. 😆

Sight & Sound.

While not as much you can do about this, just be aware that many of those with fibro also have sensitivites to bright lights & loud noises. So no going into their room to wake them up with opening the blind & the window with a 20 piece band. That could severely thaumatize them – I know it would for me.

Taste.

Well there’s not a lot you can do suits you are not actually feeding them or forcing food down the throat.. lol.. You can simply be aware and take into consideration food sensitivities if you are aware of them. The last thing anybody wants is for someone to spend the evening in the bathroom, stinking it up.

General rule of thumb for me, the more natural, the better.