Archive for the ‘Coping’ Category

Camping 2023

September 20, 2022

I didnt get to go away and camp much this summer & enjoy it this year. I had my cub camp, I had Canada Day at the former BFF’s, and this recent explosion Didn’t even get a weekend away with the FWB independent on other people..

So next year, I’m saying “Fuck It!” Beyond my cub camp & my scheduled week at the cottage, I’m gonna book my own time away if people want to join, great! It’d not, Lilly & I can bond instead. I think I’m likely gonna be at conversation areas cuz I like the coverage better there & they tend to be cheaper.

My Campfire

Other than my own appointments & commitments (some may still be virtual), I don’t really have to answer to anyone.

I will have to contribute to the car maintenance & stuff more, but I’ll have to figure it out. The car, by mileage is due for an oil change, but not by the time frame, so I’ll have to do that early for them Actually shoulda had them do it yesterday while it was in the shop. **Shrug**

But that’s what I’m gonna do. You wanna join, give me a heads up, but beware there is limited space in my car, given equipment, food, clothing and the pup. ..

i still might be heading to Winnipeg, but if that’s gonna happen it’s soon, or next year. .

Cognitive Issues with this Project

September 13, 2022

I have been sewing to some extent, all my life starting with Brownie badges & Barbie clothes.

In Jr high I made a denim pencil case, some board shorts, & a couple of pillows. Growing up I helped Mom with her sewing projects

Over the years I’ve branched out on my own projects. I made myself clothing as some of the plus clothing in the stores just didn’t suit me or were poor quality. I’ve made pants, overalls, capris, dresses, camp ponchos, Halloween costumes, etc.. I even helped my mom make pajamas for my nieces. Then there were covid masks – lots of COVID tri-layered home made covid masks.

I’ve made alterations of different types including simple hems, preplacing elastic waist bands, reinforcing hems, adjusting the fit of dresses, mending of many a dog toy, not to mention tons of buttons & camp & uniform patched &:badges.

So, needless to say, I have had a decent grasp of the concepts with sewing.

Recently, my sister asked me to help her sew slip covers for her outdoor furniture. I agreed before I found out there were 28 cushions to cover.

Now, I know I’ve had cognitive impairments that have impacted my ability to function. Family members have not noticed to what extent this has impacted me, until this project.

Both my Mom and my sister are stunned with the amount of problems I’ve been having. We all agree I am not stupid. I’m quite intelligent but there are so many other ways I’m having issues.

Poor Communication : I think I’ve told someone something that I thought I had. I also have trouble explaining concepts, ideas, solutions in a way that others can understand I will bet I’ve not explained the problems accurately or succinctly enough below to make most people understand issues I encountered. Then solutions to problems (see below) that my sister recommended were the same as mine but just from a different angle but somehow I can not able to explain it. It happened so many times & I was so frustrated with myself that I just let her do what she wanted, sometimes even if I knew it was wrong and I couldn’t explain why.

Ability to Remember / Relearn : I should know basic sewing skills like how to thread a bobbin, which way to sew a hem, how & where to place a seam, knowing what stitches do certain functions, how hard to pull the material through, how quickly to run the machine. These are all basic skills I had and in some cases have taken up to a week to remember or relearn.

Poor Problem Solving Skills : With sewing from our own pattern, I’ve encountered multiple problems, many due to missing the skills above. I had taken me days to figure out solutions to some of the problems for example, seams. I keep reversing my seems and putting the seem on the incorrect side, putting the rough on the outside instead in the inside resulting in many seams being removed and redone. Another is sewing only the fabric required & not accidentally overlapping other parts of the material – I still did this a week after starting. My sister even said my problem solving skills were so bad that I probably would not even be able to work at a job as basic as McDonald’s.

Inability to make corrections: This goes with the problem solving skills. I had a piece of material with one side of velcro on it. I sewed the piece on correctly. However, I had seen it on incorrectly. I had though I’d put the velcro on the wrong side, so I ripped it off. This made the initial blunder even worse, because after I’d switch the velcro to the top, I was then able to see that I had sewing it correctly to begin with, but had reversed the seam. So I had to remove the piece and the velcro again. I had to replace the velcro to the original correct side and resew the side piece coorectly. I was so frustrated and almost in tears because I never would have made this massive double blunder when I was younger.

Spacial Impairment : First, I have a good background in mathematics including social orientation and had even earned a small scholarship as a result, but my sister never had that as a strength. So, as I mentioned above, we were sewing from our own pattern, nothing pre established. It was based on a YouTube video my sister watched. I’ve had alot of problems understanding the way she has wanted me to sew certain pieces on & how they should work together. The only way we were able to visualize how things should be done was by actually putting the fabric on the cushions. Neither of us could get the orientation in our heads. For my sister, that was fine, but for me, it had been a strength and I felt so useless.

It just upsets me, writing this post, to actually write down how many problems I have, how many intellectual skills I have lost. I’m almost in tears. Frustration? Grief? I don’t know.

So because of how obvious it has become, my mom & sister have both suggested I talk to my doctor about these issues Because I can not explain the issues well, my Mom is coming with me, and I’ve asked my sister to write up her opinion. She actually asked me if she wanted her to write it in a way that won’t hurt my feelings. I know it’s bad, so I told her to be blunt & straight up. I know she has great communication skills, so she will be able to express my problems in a way I can never do.

I asked Wendy to write something up for my doctor & accidentally got the date wrong so this is the quick blurb she wrote for my GP.

"So working memory… able to hold things in head to process them, general memory.. asking questions that u had asked a few minutes before, making same sewing mistake many times e.g side sections.. still sew up past stop line after 8 corners, doesn't occur to you figure problem solve this e.g double pin… you came up with solution but I brought up the idea to problem solve this."

I’m pretty sure the issues are due to fibro because I *have* had assessments done and even several MRIs because of it.

I have blood work which I have done and I’ve scheduled a cognitive and memory test for the 29th of August. I follow up Dr Uju I’m September 6th

fyi

September 6, 2022

For me, with depression, comes short temper, bitchiness a short fuse, isolation and zero motivation.

The only time you will see me do are the ones that are required, in my opinion, I’m dealing with one of my vices, are the rare times I am trying to get out of my head.

if I want to talk, I’ll tell you.

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 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….

Trifecta to Being Productive

July 8, 2022

I find there are three health benefits of being productive. I’m not necessarily talking about cleaning the whole house or an equally large activity. Even something smaller like getting X amount of laundry or dishes done. Something manageable but productive but nothing that is too much.

After getting something done & done well, I feel three things:

  1. More awake and alert
  2. More energetic
  3. Less pain

Additionally, I feel better about myself and accomplished as I’ve set a realistic goal & reached it.

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!

MRI’s Suck

April 22, 2022

Last Thursday & Friday (yes, Good Friday) I had an MRI both mornings. And it was not good.

For those who are unfamiliar with MRI’s, the machine is basically a tube, looking kinda like a doughnut. It has a bed attached to slide the patient in. How you go in & how far in you go, varies depending on what the scan is for. Mine are for my brain so I go in head first, as far in as my elbows . Alternatively, you can go in feet first and I have found out that they have a smaller sleeve kind of version for arms.

My fibro was flaring something fierce and had been since the Sunday prior. I know the MRI machine dors jostle to adjust for the scans, but I’ve never felt like this! Every time the bed was adjusted it was a fast start & a fast stop immediately after. It was very jarring on the body. The fibro pain was excruciating! Add the pain in my left arm from the scar tissue breaking up from my RMT (more coming), and I was almost out for f my mind. And I couldn’t even move my arms because that could cause the scan to blur which could lead to to inconclusive results and a repeat scan.

Add to this situation my claustrophobia, a fear of small spaces. On Thursday, the only thing that has kept me sane and kept me somewhat still, was slow deep breaths through the entire time. Even through each and every shift in the bed. I’m not sure I was able to keep myself motionless sufficently for a clear enough image. On Friday, I was smarter and remembered to take the lorazepam I had so I could quiet my mind while in the machine. That helped keep me more calm and helped relax my muscles. This made my fibro chill out and actually helped decrease the pain. I also was smart and lay my arms in a more relaxed and comfortable position before going in. The movement of the bed adjusting was still very jarring on the body, but with the breathing I was able to cope better.

When I got home, I went straight to bed to catch up on sleep and the lorazepam was really starting to knocking me out.

Results are still pending.

Things Got Better

December 21, 2021

Since my last post, the new nurse Christine was able to get my meds to where they were supposed to be for the most part. I will be eternally grateful for that.

Unfortunately, real damage was done in the way of pain.. Fortunately, I do see Dr Sith tomorrow.

But the brightest moment of this 72-hour hold was today at about 6 in the evening when I heard a voice. It was a woman’s voice. She had a Jamaican lilt to her voice. I placed her immediately as being *my* psychiatrist I walk towards her voice and she was in a room talking with a patient but she looked up at me and despite the mask and my weight loss she recognized me immediately and then saw a surprise on her face.

But she’s my doctor and I’ve been in her practice for almost 5 years. She is familiar with what’s going on with me and my history so I was super comfortable at that point. I took a deep breath and was able to relax.

A half an hour later, she and the nurse came down to my room and we discussed what caused me to come into the ER.. She wanted to know how I got to the ER.. We talked about how I was feeling and feeling out my.state of mind.. She asked me why I was so animate about leaving as soon as the hold was up.. She reacquainted herself with my home situation.. We discussed my weight loss – cuz it has been 2 years since she’s seen me & I’m definitely smaller. She asked me what I thought she could help with..

Apparently, she liked what she heard and she discharged me. WITH a meds change, which is really all I wanted.. That and to actually have an appointment set up with her which got done earlier as well. 🙂

Am I still pissed about how things went down?? Definitely. Am I happy with the final result? Absolutely!

Flaring! Flaring bad!

November 23, 2021

Yesterday was the perfect storm. Everything conspired against me.

  1. Poor Sleep. According to my fitbit, for the last several weeks, I’ve been getting usually between 4 & 6 hours of sleep a night, average rating poor-fair. There’s the occasional longer, better sleep in there, but not often..
  2. Forgotten Medication. When I left for the cottage early this morning, I forgot all my meds at home. Admittedly I didn’t need them all today, but there are certain ones that I do have to take at certain times for them to be effective. Unfortunately, those got left at home. I did have limited or weaker alternatives which I suppose is better than nothing.
  3. Emotional Stress. I am currently having problems with my current relationship. I’m not sure if it’s something I can handle and accept or not, so there’s alot going on there..
  4. Poor Diet. Due to the aforementioned stress, I haven’t been eating.. I haven’t been eating well & I haven’t been eating much. Neither is good, both is worse.
  5. Activity. Spent the day in bed.. with my boyfriend, not sleeping. While this is usually a good thing, due to stress, I was unable to truely relax and enjoy it. So I was getting the workout without all the longer term benefits
  6. Physical Stress. After I’d started going down hill, I had a horrible drive home. What would normally be a nice relaxing 1½ hour drive home from the cottage turned into a 3+hour nightmare. Between accidents causing an entire highway to shut down for over 14hrs, excessive detours, multiple accidents on said detours, snow.. The body begins to tense up more & more & more.. and with me being in the car I wasn’t able to like stretch or anything creating more physical stress

For the first time in over 3 years, my pain turned to a solid 8/10.

After 2+ hours, 4 Tylenol3, 4 muscle relaxers, an anti-inflammatory, my CBD oil, prescription edibles, and a backrub with A535.. the edge started to come off, but I also started feeling the effects of over medication too..

I just can’t win..

Stuff That Doesn’t Mean We’re Okay

October 29, 2021

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


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.