Episode 3: Some Days you gotta get out and walk

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Walking is good for me. Physical movement and excerise are good for me. I know this, it comes up at every appointment with the Rhuematologist. But sometimes, it’s easier than others. Virtual Races make it more fun, online running clubs like the Hogwarts Running Club make more fun. And using apps like Charity Miles, help to make it more meaningful when I can do it. I’m not just getting out and doing something for me, I’m helping doing something more, this month my charity of choice is Girl Up, which works to empower girls worldwide, and my virtual race I’m doing through Yes.Fit is the Adventures of Sherlock race. 

Doing something for me is huge and big and important, and good for my physical and mental health. But getting to connect to the wider world around me? What else is technology for?Hogwarts Running Club

 Yes.fit

Girl Up
Charity Miles

Episode 2: The Truth of the Smile

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Even when I’m having fun and doing something I love I hurt. Even when I’m off someplace at an event for something I adore I hurt. I may be ignoring a low pain day, I may be pushing away a flare, or I may be pulling out meds and saying “I’ve got this and no matter what I’m damn well going to enjoy this,” but the pain is there always. My limited movement makes it more awkward because I haven’t yet found a way to not feel super awkward with my body and the way it moves and doesn’t move now. I’ve never liked smiling. But now, these days I feel like smiling is a mask. Something I put on for the world to tell them “oh I’m ok, I’m fine, I’m even pain free and normal” when none of those are true. Not one. Not smiling is normal. And I’m learning that I don’t need to smile and fake
it all the time. So even if I’m not smiling I’m still likely having a blast. And I’m likely internally screaming at my body for flaring and hurting. Either way, I’m as good as I’m going to get.

SideQuest #1

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Painsomia and pain flares are a the absolute worst right? One of my absolute favorite ways of dealing especially when the meds are taking forever to kick in or I can’t find a comfortable position to sit or lie in is to obsessively watch The Great British Baking Show. Seriously as much as I love and adore reading (my TBR piles are arranged in particular orders and I have a Yearly Goodreads challenge) on those nights and sometimes days my brain is mush and can’t function or deal with storylines and words plots. So documentaries and reality tv comes in handy. The various Alaskan tv shows also are excellent and are a future post. But GBBS or as it’s sometimes called The Great British Bake Off (GBBO,) it’s a frequent fav and I need more than 15 episodes up on Netflix. I’ve also binged the Masterclass multiple times. It’s calming and sweet, even though i know the show is stressful for the Bakers it’s not stressful for the watchers. They all help each other. They are kind to each other. Which as a person living with chronic pain who struggles still with asking for help when i need it is an object lesson that I can revisit in tv form when I’m at my weakest mentally and physically.
End of the day, what I’m saying is, how the bloody hell did we all survive before Netflix and Hulu? And more shows that exhibit kindness and people helping people and not plotting to backstab (though those are fun too in doses) can possibly make the world a better place long term. But then I also binge Reading Rainbow and Julie’s Greenroom when I don’t feel well. 

My shows I’ve got up on my queue right now for plots all twisty and fun are Call the Midwife and Riverdale. And I can’t wait for Supergirl season 2 to drop on Netflix as I missed a lot of episodes over the season. 

Anyone have a preference for the next SideQuest? Call the Midwife, Riverdale, or Supergirl? Or option D which is random surprise. 

The Origin Story of Fibrogirl

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Officially I’ve been at this game for four years, my fibro reality though, like so many others goes back years.

My first memory of super “this is not right at all” pain goes back to when I was 16, ten full years before my official diagnosis. I live in jealousy of those who get theirs quicker. 

But my origin story involves orchestras, and a day long workshop before the one and only performance that year of State District Orchestra, Band, and Choir.

The night before my right hand and wrist had started hurting. Which if you know stringed instruments isn’t good, that’s the bow hand, and bowing is all small and medium fine hand and wrist movements. I tried to limit my use that evening as my sisters and I prepped for the paper route but looking back, I knew even then I wasn’t dumb. I was worried about the next day and how I would hold up since my body was betraying me.

Next day only a few hours into the rehearsal, the only full rehearsal with the guest director, and things went bad fast. I was saved from my stubborn pride ( which was insisting everything was totally fines and I could play pain free) by my regular stand partner seated one stand behind me with a clear view of my face, and my younger sister in the bass section directly behind us awesome viola people, and also with a clear view of by face. They knew my facial expressions, they knew I was lying through my teeth when I said I was “fine” and they were the ones who got our regular director during a break and explained that something was wrong. And pushed back at my “I’m fine” because I was working that concept as best I could then, I’m better at it now.

I didn’t play the rest of the rehearsal, just did the fingerings on my instrument as it sat on my lap. That night I l only played one song, the one with the easiest bowings.

My director was the first to suggest it might be just “growing pains” to me and my parents, but hey he did also suggest we see my doctor.

Thus began a 10 year odyssey of pain, being ignored, taking at times the absolute max of over the counter painkillers, all for little to no relief. Until finally, the Rheumatologist in the first 5 minutes of meeting me and examining me gave me the diagnosis I knew at that point had to be coming. The one Neurologist #2 had suggested off hand and dismissed in one fell swoop 2 years earlier. ( point of order kids go to the Rheumatologist not the Neurologist # 1,#2 or #3, Rheumatologist knows more in this case.)

That’s my origin story. How I became a Fibrogirl. I’m not the only one out there. The more we speak up, the more we all showcase what makes us, us, the survivors and spookiest of chronic and invisible illness the more the world will see us.