Monday, January 27, 2020

Please, Let Me Finish

Let me preface this post by saying I tried my hardest not to come across rude or ungrateful, but I know, at times, we can read something and not hear tone or intent. With that said, if you read this post and get the sense I'm being disrespectful, bratty, etc, please know that is NOT my desire. And, now, with that little caveat out of the way, let's get onto the post ;)

I was diagnosed with Fibromyalgia back in ninth grade (holy crapoly, it's been over TWENTY YEARS ago now - WOW!). I had fractured a couple vertebrae in my back due to a cheer leading stunt and the pain never went away. After countless doctors appointments, seeing my fair share of specialists, trying what seemed like a billion routes of treatment, they finally landed on fibromyalgia (which, at the time, was seen by many medical professionals as either a catch all for something they couldn't quite put their finger on {since there was no test to run and fibro presents differently for different people} or "all in the patient's head" since all of the tests run come back "normal"). I'll be honest, at the time I was a little relieved that there was actually a name to go with all of the pain and symptoms I was feeling, but, on the other hand, distraught that there wasn't an easy or clear fix. I was told "you won't die from it, but you will die with it". I'm not sure if that was supposed to be reassuring or not, but let's just say that reminding a fourteen year old of her mortality wasn't very comforting.


Without going into the nitty gritty details of fibromyalgia, you can take my word for it that it sucks. The Mayo Clinic defines it as "a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues." See, like I said, a catch all of craptastic symptoms and issues... I wouldn't wish it on my worst enemy.


Although living with fibromyalgia isn't a walk in the park (actually, walking in the park can feel like an insurmountable challenge some days), what I wanted to talk about in this specific post is FIBRO FOG.
Fibro fog: A type of cognitive dysfunction reported by many people with fibromyalgia. Also sometimes referred to as brain fog, its symptoms include difficulty with concentration, memory deficits, and confusion. The reason for the changes in brain function with fibromyalgia is not clearly understood. [via MedicineNet]

Have you ever experienced what some call a "brain fart"? Where you're trying to think of a word/ phrase/ idea/ memory/ etc and it feels like it's just out of reach? The wheels of your mind are turning but they aren't spitting out the result you're looking for. Well, I experience that, thanks to my best friend worst enemy fibromyalgia, more often than I care to admit. 
I'm an intelligent woman. Not to toot my own horn, but I graduated in the top fifteen students in my high school class, went to one of the top ten public universities in the United States and graduated with an Economics degree while maintaining a GPA of 3.68 and working 20-30 hours a week. I'm an analytical thinker, dependable, a problem solver, self-motivated, a hard worker, etc... but at times I can't think of the word "apple"... you know, that red thing in the tree we like to eat... 
Let me say, fibro fog is no joke. Yes, the physical pain my body is in 24/7 sucks, but I can't even explain how frustrating it can be when you're trying to have a "simple conversation" and your brain seems to be fighting against you the entire time.
And, here is where I might ruffle some feathers... Not only is it incredibly frustrating to not be able to get your mind to work the way you want it to, but when your friends/ family/ loved ones/ random strangers you are speaking with try to "help", it can be infuriating. Say, for example, I'm talking to the hubby and my fibro fog rears its ugly head in the middle of a conversation about the beach. I may be stuck on trying to come up with the word "sand" and the hubby, bless his heart, senses my frustration and starts tossing out words he thinks I'm trying to say. "Oceanside" "fire pit" "towel" "sunshine" Again, I'm not trying to come across as ungrateful, but throwing out words that one thinks I'm trying to say is not helpful. In fact, it makes me feel dumb, ashamed and even more discouraged. When this happens, at least with the hubby, I look at him, try to take a deep breath, and say "Please, let me finish". If it happens with someone I don't feel as comfortable with, I may just shut down and say something like "oh, never mind" because I want out of the feeling as quickly as possible. 
I know, this may seem like a trivial thing, but to me it's huge. Don't get me wrong, I appreciate the idea of help, but the fibro fog already makes me feel like I'm fighting a never ending (and un-winnable) battle, and, at least personally, if I can't think for myself I'm losing a huge part of myself. I realize not everyone with memory issues may feel the same as me, which is absolutely okay, but for me, I don't want to feel dependent on others to form thoughts or coherent sentences.


The reason I am even taking the time to share this is because I realized, if I don't voice how this "help" makes me feel then I can't expect people to read my mind and recognize it is something that can make me feel slow and stupid. Maybe it is something I need to work through and "get over", maybe I need to accept the assistance with a smile and a grateful heart, maybe I will get there eventually, but, for now, I want to be able to process through these brain farts on my own.


Thanks for trying to alleviate some of the frustration I'm feeling when I can't get my words out, but, please, let me finish.


Is there something that bothers you but you don't mention it when it occurs? 


Kristen@goodngoodforya said...

OMG YES!! I don't get fibro fog but one of the medications I take to decrease the frequency and severity of migraines (and it works- I've gone from borderline chronic to 1-2 a month) can cause word finding problems. And it is soo frustrating!

Denise said...

My original comment didn’t post, so if it appears please forgive this second post
Thank you s o much for posting this. My husband was diagnosed with fibromyalgia in 2009, actually 2010. Ever since then his memory has deteriorated. Recently he was sent for a cognitive test which he failed and has been asked to follow up for additional testing to rule out Alzheimer’s. It wasn’t until he switched rheumatologist that he was advised the memory problems are related to fibromyalgia. Your post along with with the most recent rheumatologist advice has given us hope. By that I mean that we now understand what is happening and we will work through this. I appreciate your full disclosure and can somewhat empathize based on how I see my husband get frustrated. In the meantime, I’m trying to get him to be a little more active , by walking, gardening and doing yoga. I won’t lie, it’s somewhat challenging since he’s pretty stubborn… LOL thank you again for giving me additional insight.
Denise Fialkosky
Aka DeeNice

Evan said...

So much yes! It’s been 13 years with a fibro diagnosis for me. I see you, it sucks, we’ve got your back girl!

Margo Meta said...

Yes! I screenshot the part about your well meaning hubby to show to my well meaning hubby. I don't have fibro, but my immunosuppressants for ankylosing spondylitis do the same thing and it drives me bananas.