My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. Read More.
Some of you may have noticed that some posts are no longer visible. In hindsight, probably not the best place to vent. So for those who missed it, here is my birthday weekend in a nutshell:
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..
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…
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.
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.
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.
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..
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?
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.
& 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.
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..
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..
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. 👍
Fibromyalgia 
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