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. 🙂

Tips – Avoid Negativity

Always try to avoid as much negativity as possible in your life. Most of all, whatever makes you laugh or feel happy, do that.

So there are people in your life who put you down, disregard you, ignore you, are demeaning to you or don’t believe you These are the people you cut out or limit, if possible, from you life.

Activities that you can’t do, don’t want to do but are pushed o you, are having extreme difficulty doing. These are activities you cut out or limit to the best of your ability Unfortunately, single people can not just stop doing dishes or laundry unfortunately. 😅

Hang out with people who truely care and support you. My sister is one of those people. I see her usually twice a week. We go for a walk (yes I enjoy walking) and chat about her, about me, about family, about mutual interests, about friends, Just life.

Do things you enjoy. Sometimes they maybe hard, but if they are worth the effort, do them to the best of your ability. I like to read, so I will grab a book and sit outside (sometimes in the sun, sometime the shade) for an hour or two and loose myself. Something that can be difficult, but worthwhile, is my Cub pack. I admit I do tend to overdo it sometimes, but it brings me & it brings the kids (well 99% of them) joy, fun, exercise, learning and an appreciation or nature & each other.

Tip – Rest, but move

No matter what you do, absolutely rest when you need to. *BUT* later, try to keep moving, even if it’s just a little tiny bit. I’m not talking a rub or walking around the block, but maybe walk in the backyard for a few minutes every hour or two, just to keep you mobile & your muscles from getting too lax. .. Do not to overdo it or try not to. Listen to your body..

Non-Scale Victories!

This is part of a series of various Non-Scale Victories. They are things I’ve noticed over the last few years as I’ve lost weight.

At The Gym – Part I

i have recently returned to the Durham YMCA fitness center. Mom & I going two years ago due to COVID and are going back I’m not doing the same activities as I used to for a few reasons.

The schedule and availability of classes is different and limited, a casualty of COVID. My own personal schedule activities has changed – the times I can go and the timing of what is available rarely mesh.

Arriba– The only organized activity is the Arriba class, the one where I step the the music because my coordination sucks. I do some of the step movements with ease cuz they are steps I used to do in my dance classes all those years ago. I rarely do the arm movements cuz I’m usually too focused on the stepping to get it right or even can’t been bothered to figure them out for the most part.

But here’s the thing, I’m able to do the class and not be completely exhausted afterwards. Yes I will feel sore afterwards, but it’s a good sore. Unfortunately, last week even tho I was taking it super easy, I inflamed my fibro even worse. But generally it’s an in improvement.

Swimmimg – Because I’m still waiting for Koolaid to finish healing again, I’m not allow to get him wet with chlorinated water, I can’t go into the pool. But for the one week I was able to go into the pool for a week, I did and was able to walk the lengths of the pool, back and forth. Yes taking breaks at each end, but I am slowly able to do it When I first started doing water, I would only treat water in the deep end of the pool. Given the high amount of fat in my body then, it wasn’t difficult, cuz fat floats. So a definite improvement.

Unfortunately, there is no Aquafit (bouncing to music in the water) that currently fit in my schedule. I hope it opens up soon..

Towels – I am a plus member at the Y and one of the perks is the towel service. When covid shut us down, I was unable to get the larger gym towels fully around my body, to say nothing about the smaller towels. When I returned I found that I could not only wrap the large towels around me with fabric to spare, I was able to do the same with the smaller bath towels! Wow!!

Stairs – To make it to the workout rooms and the upper studio for the yoga classes, I would have to climb a double height staircase. Sometimes, on bad days, I would take the elevator up. On really bad days, I wouldn’t even both going. Those days I could make it up the stairs, it was a massive struggle. I’d commonly stop at the landing and take a breath.

Now, to stop part way up at the landing means I’m having a bad day. But I can now climb the stairs all the way up. I didn’t notice I had done this until several visits in..

Socializing While In Pain

Do I socialize when I’m in pain?

Yup, I socialize, otherwise I’d be a hermit!

Yup! Otherwise I’d be a hermit. Plus, very few friends can identify how much I’m in pain. My bff & my sister can tell by looking at me.. I have other friends & family who have learned the signs.

Mom can tell usually just by looking at me.. not always, but usually.. My sister is pretty good.. Her kids & hubby not so much – ironically I think the kid of hers that would recognize the best is her youngest, because he has seen me the most over the last few years.

My guy friend T has, over the last 3½ years learned quite a bit about how to read the non-verbal clues.

My BFF also has fibro & is sometimes a little too focused on her own fibro to catch my issues. Only reason I can gauge her easily is that she has an emotional response to her issues that I don’t even think she’s aware of.

My second BFF also has his own issues, and usually only sees me on better days.. I don’t think he’s even seen me at mediocre or worse in a long time..

Them there’s some of the Scouters I work with.. Raksha 13th & I have become good friends through Scouting & Rainbow I’ve known since grade 8 or 9, but through guiding & scouting as well. They are pretty good a picking things up.

There are other friends who are less prevalent in my life but even they can recognize some signs if I’m having issues

What I Can Do.

So, there is the basics of who I tend to see most, then the next thing is *what I can do*. Mind you the days when I’m seriously f****d up due to symptoms, I don’t talk to anyone unless I haveta Haveta HAVETA.

Now pain & other symptoms varyy from week to week, day to day, even hour to hour.. Fortunately in the last few years the hour to hour option seems to happen less and less frequently, but for a long time that is how I had to play it.

When my pain levels are super high, any communication is digital.. To everyone. If you’re lucky..

^{Digital Communication Only on my Worst Days, At Best}

Next level down:

• Mild exercise like walking my dog around the court
• Have company over for low maintenance visits
• Socialize for dinner with Mom & Dad

^{Exercise by walking the Dog Around the Court Is All I Can Handle Some Days.}

As my pain levels drop, I can be more sociable in activities that require less interaction such as:

• Hanging out with selects friends in a quiet environment, such as a campfire, living room, patio, poolside, dock.. This would be BFF’s, & T, for the most part
• Walking around the neighbourhood
• Watching the kids’ soccer games
• Visiting the family cottage for a few days
• Visiting the gym for a hot tub!

^{Hanging out with Friends, in Front of the Campfire, or Otherwise, Though we use Chairs – LOL}

As the pain levels drop a moderate to low level I can usually do the following:

• Karaoke
• General.Cub Scout Activities
• Marksmanship
• Hangout with friends in a noisier, bigger, busier location like a restaurant or bar
• Moderate exercise like the walks with my sister & the pups
• cub Scout meetings!
• Glamping at my BFF’s cottage
• Concerts (depending on who, I may go on a worse day & accept the consequences)
• Professional sporting events like the Leafs, TFC or The Rock.. & to a lesser extent, Argos, Jays or Raptors..

^{Concerts with Friends Are Always Fun!!}

So assuming my pain level is low, there is a lot I can do. I can:

• More strenuous exercise such as cycling
• Visit the gym for Aquafit, yoga, weights, or the track. I had gotten in a few slow Zumba classes in before COVID..
• I can Camp – not the glamping like at the cottage, but camping with friends, and even my Cub Scouts . In fact we were going to Camp Impressa for a year end camp earlier this month with my senior Cubs & the Scouts (See more in this post).. & I just went camping 2 weekends ago with T
• Sporting activities like soccer with the girls or golfing with T
• Some of the more physical activities in Cub Scouts.. Such as teaching how to put up tents, waterproofing the bedroll, setting up grey water, basic orienteering, limited kayaking/canoeing, etc..
• The Pheonix. – Dancing at the club!
• Hiking (like fairly flat, fairly short, nothing overnight – Second Marsh near me is a good example)
• Roadtrip!

Easy Hiking with Friends

What I can not do.

There are so many things now that I would like to do that I just not in the cards. These are activities the I’ve either done or were at one point on the bucket list. This includes activities such as:

• White water rafting. T wants to go – I can do the camping part, but not the rafting part
• Backpacking/ Hiking. This includes longer hikes, more challenging hikes, or overnight hikes. I can not lug an air mattress through the wilderness 😄
• Winter outdoor camping
• Amusements parks – can’t do most of the rides, and way too much walking.
• Skiing
• Horseback Riding
• Zip-lining (not sure I’d do that anyways)

_{^{Canada’s Wonderland, the Prominent Amusement Park in the Toronto Ontario Area.}}

What would you like to do that you know you will never do again?

RLS then Exercise.. Uh oh!!!

On Friday last week, I posted about issues with my RLS, but that wasn’t the end of it.

As I said, on Wednesday night I was having problems getting to sleep, big problems due to restless leg syndrome in all four limbs – very rare. So I went on the treadmill for 20 minutes then snuggled nicely into bed.

^{Walking on a treadmill can help burn off the restless feeling when my RLS flares.}

Thursday morning, I woke up & my legs had felt like I’d run before full marathon with zero prep the day before, instead of just 20 minutes.

So I started with the pain meds, the anti-inflammatories and the muscle relaxers that I do every day when I get up. The unexpected pain did eventually start to lessen more.

But Thursday nights are one of my cub nights with my third years, howlers from both packs. We’re helping them work on their Seeonee Award.

Fortunately, when this meeting was planned we weren’t aware if we were going to be in person or not so we planned a virtual meeting. The kids wanted to play Drawsaurus which is an online version of Pictionary. Lots of fun!

^{Drawsaurus is an online version of Pictionary! The boys love it!}

So I didn’t have to do anything. I did not have to prep much, other than just set up the game which took about 30 seconds. We played 4-5 rounds I believe. We could do this because it was a smaller group, just the four of them tonight.

So as we started we are having fun and I’m relaxing. Silly me, I text my sister and ask her if she wants to go walking tonight after my meeting, which we normally do on Thursdays.. Of course she responded in the affirmative.

I was actually starting to feel better at the end of the meeting – Yay!!

I make it to my sister’s for 9:00pm and we leave shortly thereafter walking the dogs. Our pups were both very well behaved tonight, strangely enough – they usually do not start calm & maintain that for most of the walk.

So our walk was uneventful and we walked the neighborhood just south west of us. There was nothing extraordinary about our walk in the way of physical exertion.

There was a coyote but that’s a different story altogether.

One thing about that walk however was the length. It was almost 11:00pm by the time we got back to her house. In steps that is over 10,000 and about 5½ miles (no clue why my Fitbit is still in miles)

^{God Help Me! Five miles & 11,000 steps for one casual walk.}

So take a guess how I felt afterwards. Horrible! My leggs were very painful. I’m thinking a 6 or 7 out of 10 on my pain scale..

I had a shower and the hot water was lovely- everything seemed to relax under the hot spray. Unfortunately it would return when the heat got moved to another spot. I think I need to go snorkeling in a hot tub! LOL..

So I medicated again, including my MMJ…

Guess how I felt the next day…

---

I was actually expecting to be in a flare the next morning… Surprisingly, my Leggs were sore.. pain at a 3, 3½.. was expecting 7 or so.

So, Yay! Not as bad as anticipated!

24 Ways to Ease Up

With apologies to Paul Simon, there must be… 24 ways to ease your living.

Why 24? Why not? It’s a start! That people have to go online and type the words “How to relax” into a search engine should be indication enough that modern life may be getting too stressful. Why, with all the innovations and timesavers, do we feel more and more rushed?

Time is a constant – it always remains the same. What changes are our expectations of how much we can accomplish in that same old time. It’s scientifically proven that stress can lead to sickness and that relaxation is one of the things that can soothe the savage beast.

Hopefully everyone has at least one favourite way to wind down, because not every stress soother will suit every single person. Next time you feel tense and uptight, try out one of these ways to relax. Perhaps some will work for you, while others might inspire you to write your own list of ease-up ideas.

1. Dance.
2. Mono-task, as opposed to multitasking.
3. Progressively tense each muscle, holding each for 5 seconds then releasing.
4. Stretch.
5. Go for a walk.
6. Play a game. Sudoku, crosswords, hopscotch, whatever.
7. Soak in a bath.
8. Laugh.
9. Turn off your electronics. Enjoy the quiet.
10. Read.
11. Take a 5-minute break to clear your mind and breathe.
12. Cover your eyes with an eye pillow. Allow your anxious eyeballs to feel like they’re floating rather than gripping.
13. Play with your pet.
14. Drink a cup of hot tea. Or iced if that makes you feel better!
15. Take a whiff of a favourite soothing scent, maybe citrus or lavender.
16. Clean out the drawers of your dresser. De-cluttered can equal destressed.
17. Soak your feet in Epsom salts.
18. Listen to your favourite music.
19. Light a candle and watch the flame flicker.
20. Write in a diary.
21. Talk to a friend.
22. Make everyday activities more meditative. Like walking, for instance. Rather than rush down the hallway, place one foot in front of the other and really feel your feet ground into the earth with each step.
23. Unplug (or turn off) your phone.
24. Strive to take deep breaths to reach the tight spaces of your body – try to feel your breathing in your lower back and your shoulders

Source: PC Health by Shoppers Drug Mart

Myth Debunked VI of VI

FIBROMYALGIA DIAGNOSIS IS THE END OF THE ROAD

Many find it hard to accept a fibromyalgia diagnosis, not just because of the condition itself but because of what it means. It can feel like the healthcare professionals are saying ‘there’s clearly something wrong with you but we have no idea what it is… there’s nothing more we can do for you’.  This ties into the point of the trashcan / umbrella diagnosis.

Lack of information and fibromyalgia-specific support at the time of diagnosis can leave many feeling like the diagnosis is the end of the road, but that doesn’t have to be the case. The OP was personally told by her rheumatologist not to go online because she’d ‘fall down the rabbit hole’. I imagine the doctor wanted her to go home, give up and stop bothering doctors.

Acceptance, often a difficult and ongoing work-in-progress for many, can be done in conjunction with keeping open mind, still being open to new developments, diagnoses and tests and treatments while working to manage fibromyalgia in day to day life.

Myself, I knew my diagnosis before my doctor’s did (Did the same with my endo), so acceptance was never much of an issue for me. I think my GP had a harder time accepting it than I did.

While there’s no cure, a multi-disciplinary approach can help to some degree. The likes of pacing, pain self-management therapy, massage, acupuncture, gentle exercise, gadgets, self-help books, medication, supplements and so on will work differently for everyone; both the experience of fibromyalgia and its management will be different for each person. It’s often a case of trial and error for each individual to develop a routine and to find the tools that work more effectively for them. 

My regime is a multi-disciplinary approach as mentioned above. I have a muscle relaxer, an anti-inflammatory, low level narcotics, MMJ and a small selection of vitamins. I also regularly see a physiotherapist /osteopath, RMT, pain physician for trigger point injections, & my dentist because of my TMJ, I participate in exercise which prior to covid was Aquafit for the most part. I try to watch my dietary choices, but I know I still fail there- addictions to sugar & McDonald’s. I am also involved in chronic pain support groups in my area which are currently virtual.

What hasn’t worked for me includes Lyrica, Gabapentin, Cymbalta, Fentanyl and Codeine Contin. I have given acupuncture several tries but have not found it helpful for me & occasionally detrimental. My best friend sees a chiropractor but I found that they were less helpful for me. I also still need to be very careful in the way of exercise so it’s not to over do..

30 Facts!!

Originally written for the 25th Anniversary with 25 facts,, this is a list of things you should know, from someone with Fibromyalgia. From someone who experiences it, not just studies it. I have taken the original, modified it and added to it from *my* perspective as my experiences with fibro are not the same as hers. OP info available at the bottom.

1. Every morning is a tough morning.
2. I can sleep all day and still feel like I just ran a marathon.
3. If I went out last night, I need a day or two or three to recover — its okay, it was worth it.
4. When i’m tired, let me sleep.
5. Certain foods make me flare up, For me that’s items like Ice cream breaded food products (like fish sticks or chicken fingers), mayo & salad dressing, KD, etc.. Some I know why, others no clue.
6. When I’m in a flare, leave me alone in a dark room but please check in, even if I don’t answer. It makes me feel cared for & loved .If I am flaring and I am responding, I’m likely asking for a ride to the ER.
7. Yes, diet matters, but in flare mode, all bets are off.
8. Yes, my face is swollen. No, I didn’t gain 5 pounds overnight… Well I could have gained, but not on my face.. So, Yes, that is a tell that I am in a flare.
9. I have many different sizes of clothes in my closet to accommodate flare vs. non-flare days. I currently have clothing from a medium ( very generous medium) to 3x.. I’ve lost weight, so likely only a few items & eventually they will go too.
10. Fibro Fog sucks. Ya know when you get absent-minded every once in a while? Misplaced your keys? Misread something? Forgot to water the plants? That’s Brain or Fibro Fog. While it happens to everyone at some point, it not the norm. For people with Fibromyalgia this is the norm. Every day. I have even lost my train of thought, mid-sentance. It happens enough that those close to me don’t bat an eyelash when it happens. Some even see it happening & will remind me of what I was saying. The worst, is fogging out when I drive & I love to drive, but have to be super careful to make sure I am clear minded.
11. Ask before you touch. Some days, I can barely tolerate the feel of clothing or even my hair on my skin. When I’m ok, give gentle hugs please — my skin & muscles may still be tender. But if I give you a bear hug, you can give me one back!
12. Bright lights, loud noise and too many smells can overload the senses and can cause nauseous (or worse) or kick in a migraine.
13. Allergies play havoc on my body. Scented products like perfumes & body products are typical culprits Sometimes I don’t even know I’m allergic until I experience it, So it’s a bit of Russian Roulette when I go into public because I can’t control what scents other people wear. Food allergies/sensitivities do not make life any easier either, especially when eating out.
14. I am a human barometer ( there’s a post around about that.. I can typically tell it’s gonna be too cold, too wet, too hot.
15. Yes, i am on medications, sometimes even alot of them. I have a decent relationship with the pharmacy staff, and I know exactly what all my medications are, the dosage, and why I’m on it & how it helps.
16. To me, car rides are joy rides cuz I really love to drive. I need to stop every hour or two to keep my legs from going numb or seizing up. It, for me, is so worth it! But so many with fibro feel differently than I do & equate it to a highly painful roller coaster ride.
17. Some days it’s OK to let my Fibro win. It’s a marathon, not a sprint.
18. I can get moody. You would be too if you were in pain all the time, be patient with me.
19. Don’t be surprised if I can tell your mood as soon you walk in the room. My Fibro/spidey-senses are tingling.
20. My day, week and month are carefully planned to accommodate my Fibro. Only important events & people like you are scheduled.
21. If I cancel my plans with you, don’t be mad.. Remember, I made plans with you, because you are important to me. I am trying and obviously want to hang out with you, so please keep any nasty commentator yourself as I already feel guilty.
22. Your friend with Fibro that says they have no pain doesn’t make me feel any better. Plus if they have no pain, they may not have fibro cuz *all* Fibromites have *some* level of pain at *all* times Alternatively they could simply lying either about having fibro or about being totally pain-free. Also, just cuz someone says they are “Good” that’s does not mean pain-free
23. “You should exercise.” ROTFLMAO. Have you considered going to the gym while you are in the middle of the flu with body-wide aches & pain, fatigue? Didn’t think so, so how can you expect me to when I have body-wide aches & pain and fatigue? Yes, I do exercise, but I’m not a hypocrite. Do you know how long it took from me to go from bobbing in the water during aquafit to get to my current level of exercise? Years!! It helps, that I have lost weight. Before you use me as an example of of someone with fibro who is ‘fit’, remember that I started my journey to become healthier & to increase my fitness level in the winter of 2012, almost 9 years ago. And I would not consider myself ‘fit’
24. Going to the doctor makes me sad & sometimes overwhelmed— it’s a reminder of my condition. And it doesn’t help that I have at minimum a half dozen medical appointments each month – GP, Pain Doc, RMT, Physio/Osteo therapy, Gyn, Neuro, Dental, Psych, mental health support groups, and one offs for tests like bloodwork, ultrasound, x-ray, MRI or CT.
25. There are zero no-pain days, but my low-pain days are my happy days. So if I’m looking good and acting good and I’m social, I’m better, right? No, just a good *low* pain day. Fibromyalgia is chronic & will not go away
26. Because of Fibro, the mandated downtime gives me the opportunity to write this blog, and I’m grateful. Unfortunately, some of that downtime does not even permit blog writing because the pain or fatigue is*too* intense, so I have missed posts.
27. Because of Fibro, some Fibromites get to spend more time with their families than if they were healthy.
28. if i am being a dick about my health, you will not change my mind. I have to figure it out myself. For those in my life who put up with that for years, I am sorry.
29. Because of Fibro, I’ve become part of a strong, supportive community that reminds me I’m never alone.
30. Yes, I have depression. No, it’s not because of my fibro. My depression started at age 16, but fibro, we believe, started from Mono when I was 19-20. So, obvs they started at different times plus I do know the triggering event that started my depression.

Original published by Puja Rios on May 11, 2007 at https://www.huffpost.com/entry/25-facts-for-fibromyalgia-awareness-day_b_59148663e4b01ad573dac1c2

Exercise Snacks? Huh?

Exercise Snacks? Yeah.. & no, not cookies shaped like bodybuilders! Lol!

Weightlifting Gingerbread Men

Many of you know about my loss in weight and my improved health.. Part of that is due to exercisr…But because of covid, my gym closed & since it reopened, I haven’t felt comfortable going back yet..

Some of you know that I’ve taken up “running” to continue weight loss or at least maintain what I have lost. I still needed to exercise so I’ve been doing a short circuit around the block every couple days.. Some of it’s simply walking, some jogging, and when I’m feeling up to it, I’ve gotten into a dead run (I’m faster than my dog!).. With the changing of the seasons, weather’s gotten cooler & with regular snow just around the corner, touring my neighborhood is not going to be an option.

I saw this research article from UBC about Exercise Snacks & it’s an interesting concept.. Do short bouts, like 1 minute short, of exercise a couple of times a day and it gives you the same benefits as doing it all in all be shot.

This Is How Short One Minute Is

So, I’m thinking that hopping on Mom’s treadmill a couple times a day for a few minutes could very well be a better option for me than running around the neighborhood in snow boots!

Now, I didn’t always have this much functionality because of my fibromyalgia. I also realize that there are many fellow Fibromites or others who cannot go running, jogging, or even walking a distance.. This might still be an option because you don’t have to walk. Your exercise does not necessarily have to be intense. You can do stretches – one or two simple yoga poses.. Or lift weights and when I say weights, I’m talking anything heavier than just your hand. This could give you the same benefits..

It’s something to consider..

https://beyond.ubc.ca/exercise-snacks/?utm_source=fb&utm_medium=Facebook_Instream_Video&utm_campaign=BAM-exercisesnacks-ON&utm_content=6214293621226&fbclid=IwAR136bMw5Spkla0AjSfJWXlt7VyYixwzdBv2k6vDSygkXA4wi9VeTMwNDrg

** If this link does not work, please advise. I do have a local copy. **