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

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

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

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

The Spoon Theory & Chronic Pain

I shared the spoon theory in my last post here.

I’m sure you noticed that the girl in the story has the medical condition Lupus. While obviously not the same medical condition a lot of what she says – No, most – No, all of what she said still applies to anyone with a chronic medical condition.

With fibromyalgia and my other chronic pain conditions I also deal with the daily grind of the limits put on me by my medical conditions. Like Christine, the author, I have a limited amount of energy that I can use each day. Some days I start with more energy, more spoons. Some days I start with less energy, less spoons.

I hope this gives you a new understanding about what it is like to live with chronic pain and chronic illnesses like ours.

My next post is about The Matchbox Theory which I think is actually a little more apt.

My Name is Fibromyalgia

From Chronic Pain Life Facebook group

MY NAME IS FIBROMYALGIA

Hi. My Name is Fibromyalgia, and I’m an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me.

I can attack you anywhere and anyhow I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now!

I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

Oh, yeah, I can make you feel anxious or depressed, too.

If you have something planned, or are looking forward to a great day, I can take that away, too. You didn’t ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me.

I’m rolling on the floor, laughing. Just try.

You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.

Your family, friends will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of they will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!

In closing, (I was hoping that I kept this part a secret), but I guess you already found out… the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia. ♥️

Waiting On Councilling

So I have been waiting quite some time for counseling services in my area. Almost 2 weeks ago I called Durham Family services to inquire as to my position on the waitlist. I received a call last Monday from Jason and the intake of Durham Family Services. But apparently there was a bit of a miscommunication. He wasn’t calling to let me know where I stood on the waitlist as per my request, he called to let me know I was at the top of the wait list and to get me set up with counseling.

Yay!

Finally getting a councillor with DFS!

So he was going to set me up with a counselor and I mentioned I would appreciate seeing the counselor I saw a previously. Unfortunately she had a full case load and to add to her caseload they have to get consent specifically from her. Unfortunately she was on vacation all last week so they couldn’t reach her until early this week.

I was called on Wednesday and was advised that the counselor I wanted to see had agreed to add me to her caseload..

Yay!

So, after 13 months of waiting I now have my first appointment set up for late January – only 14 months after first requesting counseling. Oi.

Better late than never

I’m just glad I have an appointment scheduled and it’s with a counselor that I’ve already built a connection with..

Then I have to wait for Catholic Family Services and Carea.. Hopefully they are timed to fit from one to the next to the next! I’d like to get my issues completely dealt with.

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How Am I A Functional Cub Scout Leader

Some days I’m not & others I push through to the detriment of .my health.

A Bit of Background

I started in the Girl Guide program at age 8.. I stuck it out earning my Wings in Brownies, my All Around Cord in Guides and most of my Canada Cord in Pathfinders before I got pissed at my leader for not giving me my badges. I was a junior leader for a year and then switched to the Dark side.. lol..

I joined Venturers at 16, continuing into Rovers and joining the leadership ranks as group committee, Scout Leader, Venturer advisor, Service team and finally as Popcorn Fundraiser Coordinator Then my health started to get really bad, I was no longer able to function in Scouting in any capacity & took a 10 year break. After going through hell with my health & my relationship, I returned home and to Scouting

My nephew wanted to be a youth leader with Beavers, so I joined with him. All I did was come to meetings & help. After 2 years he wanted to move up to Cubs, so I moved up with him. My first year was similar to what I did with Beavers, but our contact Scouter didn’t do planning very well and I wanted to expand my wings a little as did one of the other leaders (Raksha) did too. We set up a planning meeting. Akela told is last minute that he wasn’t coming which we were not surprised with cuz he’d only done a few meetings the year prior. So we started planning & an hour later Kaa, who was running our previous week to week program, called & let us know he was moving away & leaving the pack. Thanks for the notice guys.

So, Raksha and I took over the pack. Initially she was Contact Scouter, but I was the one interacting & teaching the youth the most. While it was exhausting, it was rewarding.. & just after our winter camp and spring break, COVID hit. Virtual took off alot of pressure in some aspects, but Raksha & I made a good team, comimenting each other’s strengths. We made it work. It took us 2 weeks to re-evaluate, but we kept going (that push is a whole different story) doing virtual then hybrid , now back full-time (for now) in-person. Unfortunately, we have amalgamated 2 other packs, dissolving them cimpletely. We are currently linked with another group working together as one pack

How I Cope.

I do not work because due to my health I can not be consistent or reliable. That does help. So Tuesdays are spent relaxing, with prep for meetings done on the weekend prior or the day prior.

We have very open communication & have a Facebook chat group for all the leadership. This is used to share information clarify details and to make sure the paperwork for each group is consistent when submitted. It also allows us to keep track of each other like if something comes up & a leader can’t make it, it’s posted there so everyone knows.

This year we have 6 scouters, 1 youth leader, and have grown to about 20 youth. Next year we will lose Raksha, & the youth leader but between the two packs, we will gain 3 Scouters and possibly another youth leader. So there is alot of support and shared responsibilities which makes things so much easier.

My key role is to run the meetings and make sure everything runs smoothly. This starts before opening and ended after closing The scouter who has this role usually has the name Akela. But, our Akela is named Koolaid🤣.

My specific duties include making sure we have the proper equipment and supplies for the meeting. Flags, for outdoor meeting are stored in my garage or my car. Lol. Different leaders may be running the activity but I make sure we have organized what is needed . Sometimes this requires requesting donations, or actual prep work or some organization. I make sure this is in place for the meeting.

The running of activities is shared between us, so I’m usually in a support role during activities I could run almost the entire program, I have the skills, and knowhow to do so, but that would be too much.

I run the meeting At our meeting place (the other pack has a location we use too) or outdoors, I have the cubs set up & take down the flags & totem. I run the opening & closing. I organize the other scouters in their support roles.

The kids see me, despite whether they are registered with my group or the other, as the contact point. For example at Cuboree last week, one of the girls in the other pack came to my tent, passing 4 other leaders tents, 3 of whom were from her group to get help from me. So I’m in the middle of changing & I hear “Koolaid, I’m cold” That was an easy fix – I put her child sized summer bag inside my extra adult sized indoor bag. *Poof* problem solved.

On days where I am not well, I am honest with the other leadership. We have an open & ongoing Facebook chat, so I can let them know. If necessary, make arrangements for anything I have for the meeting to be picked up & to give specific instruction about the meeting. I’m upfront with the youth as well – even have had “Don’t touch Koolaid” nights when my Alloidynia acts up.

Camping with Cubs.

So I’m.sure you are dying to know how I go camping with 20 kids. Well, this camp we actually merged the other Oshawa group with ours for the weekend, so we actually had up to 24 kids at any given time. But we also had additional leadership, 7-8 leaders at any given time.

My tent: I brought my own personal tent that I know how to set up, situated beside third year youth, hoping the younger kids will hit up the other scouters before me (& we know how well that worked). I have a double high queen mattress with a portable power source to run the pump. I have some actual bedding for the mattress. So I can use my sleeping bag more as a blanket, but also have a spare sleeping bag, a blanket & my camp poncho with extra sleepwear should I get cold.

We take advantage of the organizers running a group kitchen so we did not have the stress of cooking & cleaning up outside. Now with winter camp, in a cabin it’s easier to arrange cooking, eating & cleanup. At our last winter camp, our youth leader said he was an early riser, so we gave him kitchen duty both mornings so Raksha & I had some extra time to get ourselves moving

I do not drink coffee, nor am I a fan of tea.. So I’m sure you are wondering how the hell I manage without caffeine. I don’t. To camp I will bring 2 – 710mL bottles of Coke. One for each morning. So I get a slow regular infusion of Coke during the morning, but as soon as that is done, I switch to water, or Koolaid (about 3 calories) for the duration of the day. While I do enjoy hot chocolate, I’m picky plus it’s only offered at campfire. I do not need more caffeine at 10 o’clock at night before bed, bit I will take apple cider if offered. Since I’m exhausted from the day’s activities, I don’t need my body to be artificially stimulated to stay up later than need be.

I also wear ear plugs. Some of the kids get chatty at night and if they aren’t bothering the other youth I can just pop the plugs in & go nite nit.

To wake up, I set my alarm for a half hour before I need to be up for my body to adjust & to take any regularly required & any additionally required meds so that when I’m actually getting up, I have these helpful meds in my system.

More to come in the future….

Things Got Better

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!

Stress Impacts the Body

You all know stress impacts the human body. No one knows this more than people with Fibromyalgia. Part of our issue is that our muscles cannot relax because of the pain signals we are receiving at all times. Add stress to that, with most common physical reaction to stress is muscle tension. So adding tension to an already agitated muscle makes for a disaster.

No one knows yet 100% of the cause of Fibro. If it’s actually a physiological issue or if it’s a neurological reaction? Either way, the addition of the tension to the already agitated muscle, skyrockets the pain, with definite real pain.. Not just a neurological misfire that we could potentially be having.

And before anyone says I’m minimizing pain, I am not. People with fibromyalgia feel pain every single day. – it’s the cause we don’t know. We don’t know if the cause is something physical in the muscles, we don’t know if it’s part of the nerve chain or even something in the brain. We.just don’t know And as many of you know, I’m in a remission with my Fibro. I still feel pain, but I’m better managed and had made alot of changes a few years back. As a result, my pain levels rarely rate over a 5 – right now. I have, in the past, been bed bound. So I’ve been at both ends of the spectrum. I am the last person to downplay anyone’s pain let alone someone with Fibromyalgia.

But back to stress… I’ve been dealing with some pretty intense issues lately.. The big 2: 1. Problems with my Mom & our relationship.. 2. Issues with the guy I’m seeing – relationship may be ending. And I don’t think either one reads this blog. Those are the big ones but there is always in additional normal day to day stresses..

So….. On Monday night I had a breakdown. A complete emotional & mental breakdown (this does not include the meltdown I had earlier that day). I was in such hysterics that at times I could barely breathe.. You also don’t want to see what my kitchen looks like, cuz it all hit me as I was cooking stir-fry, which means three pots on the stove, each carefully times so everything finished hot at the same time. Interestingly enough I could feel myself deteriorating and the rice was pretty much done, the meat was pretty much done and the vegetables were almost done so I took the presence of mind to grab storage containers and just put everything in the fridge because there was no way I was going to be able to eat it and I have no family to feed. But I didn’t give myself enough leeway and ended up destroying the contents of the shelves with the storage containers.. Apparently I have a decent arm because I found, after the fact, empty storage containers or lids in my dining area, my office area, one almost in the living room and also my bedroom.

I ended up calling the local mental health line & spoke with a gentleman named Craig who listened & offered support..Initially, my mind had been racing with a lot of dark negative thoughts.. But I finally got calmed down enough after over an hour of venting. & I was no longer in that dark and twisted headspace.

I woke up Tuesday morning physically & emotionally wiped. Unfortunately this was one of the days that I just can’t say no. I had to drop my mom off at her doctor’s appointments because she no longer drives. I still also had to finish prepping my Cub Scout meeting.. Which meant I also had to run my Cub Scout meeting because this week got dropped in my lap on Sunday. The meeting went well and I was able to get out of my head for almost 2 hours not thinking about those big two issues. By the time I got home in the evening after my meeting, I stripped down, showered, got extra medicated and watched some mindless TV. That’s all my body would let me do – I pretty much hit the wall. Oh & eat some of the stir fry from the night before – lol.

And this excessive physical reaction is 100% due to stress exasperating the Fibromyalgia and some of my ppother chronic pain issues.

Fibro Sucks! But My Friends Don’t!

so we have finally reached the 31st of May, the final day of fibromyalgia Awareness Month. I know I’ve been posting a little extra and almost exclusively about fibromyalgia this month but but else would I do? LOL

what I would like to thank all the people in my life who support me. I made masks for those closest to me as well as myself. I would like to thank each and every one who wore these masks & I hope will continue to wear them until we no longer need them.

This lad is on of my guy friends whom I am fairly close to, but I was surprised when he said he wanted a mask. Apparently he knows others (including 2 mutual friends) with Fibromyalgia.

Tony.

The only one I made a mask for who I do behave an image of is my nephew cuz he couldn’t find his (not surprising, cuz his mom’s wearing it!) But my sister, her 2 daughters, and my Mom & Dad. I thank my family for their support

^{Cassie & Kyah, Wendy, Dad and Mom}

My best friends and their partners.. I’ve known both Catherine & Gerry since high school. I’m lucky to have maintained their friendships after 30 years. I thank them & their partners. Cath’s masks read “I wear purple for my BFF” & “I wear purple for ME”.

^{Catherine & Brett and Sara & Gerry}

As many of you know, I’m involved in Scouting & I had some of my fellows outer request masks as they know how much it impacts my daily life.. I worked with Rainbow 13th directly for 2 years in Beavers & she is our outgoing group chair for one group. Raksha 13th has worked with me at Cub level for 3 years now& is out incoming Ng chair. She has seen how it impacts me and the improvements I have made over the last few years. Rainbow 1sy, well.. I’ve only been working in tandem with her since Covid hit & we initially amalgamated the groups, but like the bffs, I’ve known her since highschool and we did Venture Scouts together as youth.

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

& I support me. Some days I have to remember that.

i have 4 masks.. 2 that say Fibromyalgia Awareness, but different patterns.. one that states “I wear purple for my BFF” (cuz my bff has fibro too) & “I wear purple for ME”. Mine, I will have in regular rotation – good thing purple is my favourite colour..

^{4 different days 4different masks.. & Yes, each has been worn several times over the last few weeks. Very rarely was I not in a fibro mask. & If not, I had purple butterflies!}

So everyone who supports someone with Fibromyalgia, on their behalf, I thank you. Whether it’s doing our groceries wearing a mask for Fibromyalgia Awareness or just checking in to make sure we’re ok,, we do appreciate you & your support.

^{Thank You!!}

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