Posts Tagged ‘Friends’

Fibro Friends, IRL

November 2, 2021

It’s interesting to note exactly how many friends I have, real, in-person, face-to-face local friends that I have with Fibromyalgia.

When I first started having symptoms in the mid-90s, I’d not heard of Fibromyalgia let alone know someone with this condition.

I only found out about fibromyalgia through, unfortunately, Dr Google. Few doctors had even heard of it then. Many did not believe it existed. Few had any idea how to treat it..

Jump ahead a few years..

  1. First person who was a friend of mine is Billy Jo. Her and I met in a mental health workshop in my local hospital. We met because of mental health & connected over of common physical health. We have been friend for.. 8-9 years now…
  2. My BFF was also diagnosed with fibro about 7 years ago. Due to an abusive relationship I was estranged from her while she went through her diagnosis. However, because she knew of my struggles and issues I’ve had getting diagnosed & treated, she had a good idea of what the process was & how to get it sped up.. my diagnosis took 13 years.. Hers only took 3-4 years.
  3. I had left the aforementioned relationship approximately 5½ years ago. This was just in time for my high school reunion.. One of the people I reconnected with another girl named Jo.. While we were not friends in high school we did know each other and we have to come friends in the here and now. I think part of the reason why we connected so well was because I understood and she did not have many other friends let alone ones who got & understood the issues with Fibromyalgia.
  4. Shortly after that reunion I connected with a lady in Newcastle who is my twin. No, we look nothing alike however there are so many other similarities. We were born within two weeks of each other, we both went to the same high school, we have almost the exact same list of medical conditions including Fibro, we react well to the same medications as well as an overlap in personal interests beyond our health. So we met about 2 years ago, shortly before covid and we’ve connected over these similarities, but also over our differences.
  5. Growing up, the neighborhood kids down at the end of the street were friends.. The oldest had a big gap between herself and her younger siblings so she hung out more with my older brother, his friends and some of my friends as she was a few years older than me but many years older than her siblings. After I moved back to Oshawa we eventually started connecting again a few years back. She also has Fibromyalgia.

Its interesting how many people have fibro that you may not even know about..

Socializing While In Pain

September 3, 2021

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?

24 Ways to Ease Up

June 11, 2021

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

Fibro Sucks! But My Friends Don’t!

May 31, 2021

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!!

Ultimate in Fibro Fog

April 5, 2021

The best example of Fibro Fog:
My best friend’s Birthday is this week.. & as usual, I bought her gift ages ago. I have one problem, well two actually..

  1. I don’t remember where the heck I put it.. I know it was ‘someplace safe’. I should know better – if it’s not in my line of sight it’s not safe! Lol..
  2. Unfortunately I’m not even sure where to even start looking because of problem number two. I don’t remember *what* it was.. I don’t recall what I bought her. ☹️

God help me.


Edit16/04/21: I finally remembered *what*, now I have to figure out where, but I think I’m good. 👍

Post-Christmas Crash 2020

January 1, 2021

Every year the inevitable happens. I manage decently enough getting ready for Christmas, pacing myself trying not to overdo it. Every year I end up failing miserably before the holidays end.

Some years I’ve managed to get through Christmas Day with a nap and crash afterwards. . Some years I’ve actually had to postpone Christmas from the morning to the afternoon and eventually this became consistent as I really get up any day before noon. I’ve even had two years where I didn’t do Christmas with my family or anyone just because my crash hit before the holiday.

The most common reaction is to hit my wall on Christmas Day in the evening… After I get back from wherever I’ve been.. Fortunately, with the improvement of my Fibro over the last almost 5 years, that is shifting.. Crashes are less severe and don’t typically last for week or more on end..

This year, I did well! Before you say that’s it cuz of covid & no one did anything, it’s not true. Christmas this year is not *that* different.

As per the norm, I baked cookies. I give these his gifts to friends, family & my pain physician. It’s not uncommon for me to purchase premade dough however this year I made two different types of cookies from scratch. I have one of those cookies I ended up making up 4 batches. I don’t know how many cookies I made in total but in the end I had enough for two’s cookie swaps with my Cub packs, 3 small baggies, of a half dozen, 8 larger bags of a baker dozen, & 5large bags for almost 2 dozen cookies. I also did up one package of two dozen Brier Rabbit cookies (that’s the recipe I made for of) for a friend of mine who specifically likes that type of cookie.. After all that, I still had some left over.. That’s almost 400 cookies this year.

Cookies From My Cubs

As I usually do, I also did my Christmas shopping in person. I don’t like doing a lot of shopping online unless I know exactly what it is like books. So I do gifts for my sister and her family and my parents every year as well as select friends including my best friend and her family This year I also got a few things for my brother’s family beyond cookies.. Plus stocking stuffers for my Mom and Dad.. So gifts for about 20 people this year.

Because of COVID my deliveries have been different this year.. but I have made them and have had short safe visits with friends. I stopped at my 2nd bff’s on Christmas Eve Day and we had a short safe visit. . Christmas Day was spent with my parents followed by a social distanced gift exchange with my Sister’s family. Afterwards, I stopped by another friend’s later on also for a short safe visit to exchange small gifts. Come Boxing Day, I had a longer, yet still safe visit with my BFF & her family. Finally, I saw another friend that evening and gave him his cookies & gifts..

So Boxing Day evening I hit my wall (My Wile E Coyote IG post shows it well). When I got home about 8:30, I crawled into bed & slept. I ended up overheating in my sleep but you can read more about that here.. Otherwise for the next 24 hours, I slept, only getting up so myself & Lilly could use the facilities and to feed her.

Since then my pain levels have been up and so has my fatigue.. I’ve done very little over this last week. I had a Cub Scout planning meeting on the 27th via Zoom. I’ve had a visit or 2 with Mom & Dad as they only live upstairs.. I fixed a mask, having to replace the elastic & add a third layer. I have watched TV, I have player video games on my phone & I’ve slept.

Do I consider myself bedridden? No.. I’m able to function.. I can get up & take the dog out & Ake myself some food and do liw energy activities. So why am I not doing more? Cuz if I do things will go downhill.. Right now I’m just keeping the course steady so that my body can rest, relax, recuperate and heal..

Moving Day

November 30, 2020

Last Saturday was moving day. No, not me. I’m staying put. My best friend, however, has to relocate into the city for her new job.

For the last 3 weeks I have been going over to her place every other day to help her pack. The woman has *way* too much stuff, IMO. Since I’ve helped her move her household countless times over the 30+ years we’ve been friends, I would know.

Boxes,and boxes, and boxes, Oh My!

Why every other day? I am not taking the risk of going into a flare & not being able to help at all. Am I packing heavy stuff? You betcha! Am I moving it? Only when necessary & if it is light enough that I can safely lift. But some things, no way. Vinyl? No way! CDs? Nuh-uh! Paperbacks? Yes, cuz they’re in small liquor boxes. Hard covers? Not a chance. Collectables? With my flakey shoulder, I’m not taking the risk of dropping anything, so unless it not heavy & not far then sure, but otherwise, not happening. Movies? Nope cuz they are packed in a fairly big box. Linens? Depends on if it’s the big box or the small ones! Kitchen stuffs? Again depends on the weight. Decor? Nothing big, nothing heavy.. Furniture? Not in this lifetime, unless it’s like a TV tray or something equally light in weight.

Physically making the boxes, filling them,then sealing them up & moving them to start the next box, even if it’s super light, is quite the challenge. It helps that her & I do it together. She grabs the item off the shelf or out of the drawer & hands it to me, and I pack it to the box. So neither of us is doing all the actiins. Then we switch. It makes for fast work, while not completely stressing out our bodies. (BFF also has fibro). And that has been working awesomely!

Pain still happens though.
Thankfully a bad day, not a flare.

Sunday & Monday were a small crash, but may or may not have to do with packing cuz I was also exercising on Friday & Saturday.. this is the first & only time I’ve skipped helping due to pain. Given that I’d been helping pack now for 2 weeks, every other day, I think I was doing really well. But it’s not a flare, thank God, just a bad two days..

Did I unpacking anything? Only immediate necessities on Saturday. I usually start with the bed. Get that set up & made, so they have somewhere to sleep on Saturday night instead of under a pile or boxes. I rarely get past that point. But I know it’s greatly appreciated. This time because her daughter’s could not help due to covid, I started on her kitchen… Actually got most of her dishes, dish ware, glasses, cutlery & utensil unpacked.. So her kitchen, minus her food was pretty much unpacked by the time we stopped.

Let’s avoid crashing under a pile of boxes.
So, afterwards, I was home most of Sunday recuperating.. Went out for dinner with another friend that night, as we were going back into lockdown the next day. Monday & Tuesday were additional days of rest. & I was grateful that my cub meetings, despite me leading the main activity, were virtual – made bird houses! But by Wednesday I was feeling like my normal self.. Yay!!



Anyone concerned about my risk of exposure to COVID, please read my previous post “Upcoming Move – Keeping Safe”

Upcoming Move – Keeping Safe

November 17, 2020

No, I am not moving, my BFF & her hubby are.

For the last 2½ weeks I have been going over to her place every other day to help her pack.

I know there will be those concerned about the risk of getting exposed to COVID. Yes, they are moving to the city, Toronto, Canada’s biggest hotspot but we are being as careful as possible.

To minimize any risk to my parents, I’ve isolated from them while I’m helping pack & move.

I am only in one circle at a time.

My bff & her hubby are now my bubble. No, I don’t wear a mask at her place, but they are the only people who I do that with. His job had been modified so that he interacts basically with no one while he does his pickups, not at his work & not with the clients. She currently works from home, but that will shift slightly after her move. In the grand scheme of things, they are low risk of being exposed. Because of running errands & my cub scouts, I’m at a higher risk of exposure than she is as she is only leaving her place to transport items to her new home, a house.

Because I’m only me & Lilly in my immediate household, it is recommended, for my mental health, that I extend my bubble. Helping my BFF & getting to spend some quality time is also good for my mental health & wellbeing.

Immediately after the move I will isolate for 2 weeks, no bubble whatsoever before returning to my parents’ bubble. I will not be helping my bff unpack as my Mom is not comfortable with that.

On the day of, masks. Every single person *must* have a mask before entering any premises. Hands must also be either sanitized before entering, or washed properly immediately upon entering. Signs will be up to help the movers go directly to the room they need to go to, making things more efficient & less wandering. I’m sure I’ll have a Lysol or Clorox sanitizing cloth at all times to wipe stuff down as the movers come and go.

This is the best way to keep everyone safe and at a comfortable level and allows me to help her out.

More info on the move & it’s impact on my Fibro coming shortly.

Remembrance Day 2020

November 11, 2020

“In Flanders Field” was written during the First World War by Canadian physician Lieutenant-Colonel John McCrae


In Flanders fields the poppies blow

Between the crosses, row on row,

That mark our place; and in the sky

The larks, still bravely singing, fly

Scarce heard amid the guns below.


We are the Dead. Short days ago

We lived, felt dawn, saw sunset glow,

Loved and were loved, and now we lie

In Flanders fields.


Take up our quarrel with the foe:

To you from failing hands we throw

The torch; be yours to hold it high.

If ye break faith with us who die

We shall not sleep, though poppies grow

In Flanders fields.




I’d like to thank my friend Sargent Jeffrey Elo of the Ontario Regiment for doing virtual meetings with my Cubs, both the 1st & 13th, and our Beavers.. I was surprised & happy with how engaged the youth were during his presentation. With no veterans left from WWI & so few left from WWII, we have to keep remembering the veterans who died in these wars and the so many other missions since then.

F.A.S.T. on World Stroke Day

October 29, 2020

This year World Stroke Day is today on Thursday October 29th. this is one of those medical conditions that I do not have but it’s still near and dear to my heart. One of my closest friends had a series of small strokes several years ago. If they hadn’t been dealt with they could have led to a major stroke which could have left us without him. He is doing relatively well, but still does still have some lingering residual effects from his strokes.

So given that today is World Stroke Day I thought it would be a good idea to reinforce the signs of a stroke – F.A.S.T.

Act F.A.S.T
Recognize the signs of stroke

F – Face. During a Stoke, commonly, the person will loose muscular function on one side of the body. This is easily seen in the face as it tends to droop. Ask the person to smile. If the normal smile does not immerge or is very lax, this is a sign of a stroke

A – Arms. Again, with muscular function impaired, one side of the body is significantly weaker. It the person is unable to raise both arms to the same hight easily, this is a sign of a stroke.

S – Speech. Slurred speech, the ability to talk is a result of the weakened musculature in the face. The inability to use correct words or understand others around is disconcerting. Both of these situations are signs of a stroke.

T – Time. Time to call 911. Every second counts with Simone having stroke. If they are unable to relieve the pressure, permanent damage, serious permanent damage, even death can occur. So, even if you are not sure, better safe than sorry.