Posts Tagged ‘Family’

Sensitivity

October 8, 2021

In doing a bit of research about chronic illness and the story “The Princess and the Pea” I found an article written by a woman talking about her sensitivities. One of them being being able to feel the pain but the other or another is being an empath and being sensitive to stuff around her.

Being an Empath: My first year in New York, I saw a therapist who worked out of her apartment. I’d visited her there many times. One day, I walked in, and the moment I crossed the threshold, I stopped dead in my tracks. Something was different. My eyes scanned the apartment looking for what had changed, and as someone who was called the princess and the pea for being persnickety and whatnot, I was very familiar with the precise placement of everything in that area of her apartment. But as I looked around, I realized that nothing had moved, yet I could feel an immense change in the space. My eyes continued to search for the cause, but they never found it. What’s wrong? my therapist asked. Something’s different. I can’t figure out what it is. She gasped a bit, and she told me: I didn’t move anything, but I decided to move, and this week I began emotionally disconnecting from the space. You must be able to feel it.I’d certainly felt something. It’d hit me like a thud. Perhaps her emotional connection had previously imbued the space with a particular energy? Who knows, but since that time four years ago, I’ve increasingly worked to harness the power of my sensitivity. The same sensitivity that drew me to choose my Grandpa’s high school yearbook from hundreds of books in a used bookstore. The sensitivity that warned me when something was wrong with one friend and told me when another friend would find a home. The sensitivity that allowed me to feel the mountains in the middle of New York City. And the sensitivity that allowed me to smell faulty wiring in the half bath of my parents’ home and sense its danger and beg my mom to call the firemen. It’s a good thing you called, they said, this would have started a fire at any moment.It’s really this sensitivity

Now given what she posted, I have to say I’ve had brushes to the other side myself… The most noticeable was the premonition I had..

My Premonition: In the Spring of 2001 I was living in Williston North Dakota, and commuting to work in Watford City.. One day on my way to work, I suddenly had a very strong and impactful image hit me while I was driving, so I had to pull over.. It was about my bff.. She and another friend were driving some place. My bff can’t drive, so she was in the passenger side. What the premonition showed me was the two of them getting into a bad accident. The other car made contact on the Driver’s side, throwing the friend clear. Their car however was propelled around a street lamp, causing my bff to die instantly. Needless to say, I stayed pulled over for about an hour, blubbering my eyes out. Intellectually, I know it wasn’t real, but it felt *so* real that I could not help having an appropriate emotional response..

What happened? In February of 2002, the unthinkable did happen. While not the exact same as my previous vision, it was still true. There was just one big change : It was not my bff & her friend, but my sister & her partner (she was a cop).. however the other facts were the same: getting hit in the driver’s side, the vehicle being spun, her partner in the driver’s seat getting thrown the vehicle wrapping around a tree instantly killing her.

While this is not the only time I’ve had this sort of thing happen, it was the biggest, the most noticeable and the most important one I’ve had.

Has anyone else had experiences like this?

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?

RLS then Exercise.. Uh oh!!!

June 29, 2021

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!

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!!

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..

COVID Christmas

December 19, 2020

As of writing this entry, the area in Ontario which I live is at level red. This may change before Christmas as it is currently being revisited. But what this means is that while we are not on lockdown, broader, more stringent measures & limitations are in effect..

Our health department recommends that families should not visit any other household or allow visitors in their homes. Everyone should avoid social gatherings.

Avoid in-person gatherings.

Celebrate only with members of your household.

Connect virtually with loved-ones and friends outside of your household.

Avoid travelling.

Follow all public health guidelines.

Stay home if you’re sick or have symptoms.

What does that mean for me? It means our initial plans for Christmas with my sister’s family is now out. We had planned out a safe socially distanced day, but it no.longer is considered a ‘safe’ plan. So it looks like we will be doing virtual Christimas.

Once I know what we finally decide on – I’ll let you know.

When it’s Not Fibro Pain

October 20, 2020

Over the years I’ve dealt with a lot of different kinds of pain. I’ve had broken bones, pulled muscles, sprained ankles, torn muscles, chronic Charlie Horses/nasty muscle spasms, concussions & even thrown out my back. Each of those feels different from each other, right? Before a Fibro diagnosis, they are dealt with appropriately.

I’ve also dealt with pain due to endometriosis, irritable bowel syndrome, CFS/ME, fibromyalgia, osteoarthritis, regular arthritis, kidney stones, gallstones… And each of those feels different from each other. I can even differentiate between IBS pain & Endo on my bowel pain.

I’ve dealth with all sorts of different types of pain..

But once you hit that one diagnosis, many doctors don’t bother looking past it. This happens way to often for those of us with Fibromyalgia & even ME/CFS.. When you go to the ER or even just to your family doctor with a new pain issue, many of us are spoken down to and even dismissed saying the pain is due to fibromyalgia. The one time I’ve have a pain that I said wasn’t fibromyalgia but it actually was happened when I had chest pain. It was costochondritis & while this is a Fibro issue, it’s understandable the first time or three that I freak out & head to the ER thinking heart attack.

Now, I’m lucky. I have had a great support system & have over recent years learned to be my own advocate without being a bitch about it.. I have not experienced this problem much with fibromyalgia. I did however experience this at the beginning of my medical journey in my 20s.

I kept having abdominal pain.. After being put off by my GP once or twice, him thinking it was just gas, he sent me after a 4 month wait, to a gynecologist. She did an exam & sent me back to my GP telling him to send me to a GI doc.

So, GP sends me to a gastroenterologist.. After a 6 month wait there, I was scheduled for a colonoscopy (that was fun..not) and was determined to have Irritable Bowel Syndrome.. After getting it settled down by diet & medication, I was still having abdominal pain. GI tells my GP to send me back to the gynecologist.

I had another 2 month wait to she her agai,n over a year after my previous appointment. She tells me, “you don’t have endometriosis”, because my symptoms were atypical, despite still being consistent with Endo. She did agree to do an investigative laparoscope to shut me up & “just in case” she was wrong. She Was Wrong. I had Stage 3 Endo across my abdomen. So the investigative laparoscoped turned into a treatment laparoscope where she tried to in size and burn off any visual endometriosis cells. She has to go back in 6 months later to get the remaining endometrial cells higher in my abdomen that she missed the first time because she “didn’t have long my enough tools”.

So I learned early on to be an advocate for myself, with support from friends & family. If you feel your are being dismissed, say so. Cuz yes, your pain *could’ be from your fibromyalgia, but it ‘could’ also be something else.

So, my doctor’s know that if something’s not right, I will stand up and say so, not taking no for an answer.


Those who know me personally, would probably say to me, yeah, but what about that issue with your shoulder? To be honest, that is still a work in progress. Now that physio is back available, I’ll be asking my GP for a prescription & get that set up. Yes, it started in March, and I’m just getting to treatment now. But remember, alot of things closed here in Canada for quite awhile, so yeah, it’s taking a little longer to get things dealt with in this issue.

Positivity at the Cottage

October 16, 2020

My parents have a cottage up NE of Peterborough Ontario. Their shore line is comprised of layered stones both above & below the dock.

This summer I got a brilliant idea for the week I had the cottage to myself. I decided to paint these rocks. My Cubs had gotten me started on painting rocks this summer. I found it so relaxing – therapeutic even… But these ones are a little different, I didn’t paint the full rock, I just added a word to each stone. With a good selection of colours, it’s quite pretty..

The left side of the dock. Yes, there are spelling errors that have since been corrected.

I apparently can’t spell or my Fibro Fog kicked in while I was there. I am aware of several spelling errors on these rocks. I went back up recently & corrected all mistakes I am aware of. Was unable to really add much as the dock has been pulled in for the summer..

The stones do have a sealer on them, so hopefully the will last to next year. If not I can redo them. But if I get additional words of positivity & inspiration I can start filling in the other side, as this in only half the wall. The other half is to the right, right of the stairs.

Do you have suggestions for additional words I can use? I know Justice isn’t there yet.. anything else??




I also did completely cover some of the rocks around the firepit before I added words…

Pretty rocks in the firepit

Give Thanks – Cdn

October 9, 2020
Happy Thanksgiving, Eh..

This coming weekend is the Canadian Thanksgiving weekend, so I just wanted to wish my fellow Canadians & all international persons within our borders, a Happy Thanksgiving!

I wish to give thanks this year to friends, to family, to Lilly (yes, I know she’s family), to good health, to positivity, to prosperity.

To those not as fortunate, I will keep you in my prayers tonight.

HappyvThanksgiving!!

Remission! What is it?

October 2, 2020

What does this look like? Honestly, it’s not that different. Most people who have chronic illnesses only go out when they are having good day.. In remission, you are having primarily good days.. So, the big change is that people will see more of that person. Instead of once every 2-3 weeks, depending on your relationship, you might see them 2-3 times in a week!

What does it look like for me? It looks like better connections with family & friends as I can see and interact with them more.. It looks like consistent cubs meetings with a higher participation. It looks like I can do something from before but without the bad consequences like I was able to go for a hike down by the lake today and tomorrow I may be a little sore, instead of a nice big crash that used to happen.

Remission means a temporary relief from pain, fatigue & other dymptoms. I can do so much more than I could!

Do I still crash? Absolutely.. Does it happen as much right now? No. Is it as bad, as painful, right now? No, actually the pain is better right now. Does it last as long? Not usually.

So, I’m sure you are wondering, can I return to ‘normal’ life? No.. I’m still having off days. I still can & do overdo it. I crashed out one day last week for no particular reason. Today I am toast cuz of the weather shift earlier in the week. I having been slowly adding more ‘normal’ things to my life including friendships, romantic relationships, scouting commitments, family interactions, increased activity including exercise.

Am I still in pain? Am I symptomatic? Sbsolutely. That one reason I know I’m not ‘cured’ I still have pain evety single day. But lately it’s only a 2 or 3 on the pain scale these days.. I still am exhausted, but I don’t necessarily need the 12+ hours of sleep to recover from a regular day. IBS? Oh yeah., Fibro Fog? Definately.. Sensitivities? Sure, some less intense.. Morning stiffness? Oh yeah, but it’s usually less..

Why am I in remission? What did I do? I can’t say for sure, but the timing of the end of a toxic even abusive long-term relationship may have something to do with it. I returned home, slowly rebuilt relationships, re-establishing connections, increased fitness, weight loss, changed my meds & got off several, decreased dosages of others.. Lots of good changes, all of which may have contributed to my current status.

Will this last? I wish, but I doubt it.