Yes I vent about many a negative thing here on FibroFog.ca. I mean let’s face it I’m talking about a growing list of Autoimmune Disorders on a regular basis. Where’s the Happiness in that?
Sometimes Feels Like LIFE is Spinning Out of Control
I am doing my best to stay a “glass half full” person, but it’s tough.
That being said….turns out this new Life I’m to Learning to LIVE has some silver linings. I’m rediscovering forgotten interests, expanding and discovering new ones. I am spending more time with the kids enjoying shared interests like art and movies.
As a FAMILY we are going to comic book themed movies, watching TV Shows like Marvel Agents of Shield and enjoying memorabilia (especially Funko POP).
Funko POP Vinyl Baby Groot came home on Monday with VicyB
Sorry got carried away. My intent was to quickly let you know that I am now adding a new happy section to the blog.
but I’m trapped in this never ending nightmare. I can’t work, I can’t sleep, I can barely type at all. This latest Fibro-flare is really packing a punch. The pain at night is unbearable. I can’t shake the brain fog so…
When I explain why I haven’t written sooner… you will understand my Spoonie friend.
Now if I wrote that in a letter to the average person, we all know what they’d be thinking….
“she looks fine”
“she’s just negative”
“she’s always claiming to be sick”
“she’s just making excuses”
You see it in their eyes when they look at you and so I am often dishonest about the way I am feeling. When asked how I am I usually respond with “fine and you?” I rarely let them know that I’m in a disabling amount of pain All The Time.
If I get even the slightest chill it sets off a chain reaction of a deep radiating achy pain, especially at my trigger points.
Speaking of Trigger points, my hands hurt so intensely that if I bang them even slightly, tears well up in my eyes.
I could sing the Fibromyalgia, Arthritis, Interstitial Cystitis, Graves Disease, Previously Hyper but now thanks to radiation Hypoactive Thyroid, Gout, Psoriasis, Chronic Pain, Chronic Fatigue, Depression, Autoimmune Disorders Blues and they would never get it.
You my Spoonie Friend, you know what it’s like. You understand the pain and illnesses we share are not invisible to us. They are physically very very REAL and I understand you.
We get it. We get each other.
This is a letter of thanks…Thank youSpoonies for being in my life. I am grateful for each and every one of you.
I wish you days filled with so many spoons you can’t count. May your spoons runneth over.
For the sake of conversation, let’s say you have developed a chronic illness. Let’s use Fibromyalgia for example.
Life as you’ve know it is about to change FOREVER, but there’s at least one silver lining…you are working and have long term disability insurance.
As time progresses and the Fibromyalgia symptoms get worse you physically can’t work. You have insurance so you can focus on learning how to LIVE with a chronic illness and how to manage your chronic pain.
It is a very stressful and emotional time, but at least you have insurance so finances for the time being are not a worry.
First to do….acceptance. It isn’t easy coming to terms with and accepting that you have a chronic condition. It’s a huge part of learning to LIVE this new life you’ve been handed.
So while you’re struggling physically and emotionally you get a call from this woman. OK so I’m actually talking about me and it’s a true story….
Apparently she is being sent by the insurance company. I’m lucky enough to have qualified for some extra help like physiotherapy and one on one time with a Kinesiologist.
Long story short – this woman put me through the ringer. She was mean. She threatened me more than once about her 25 years of experience going to court.
She said she doesn’t believe in Fibromylagia. It’s just a label she says for fortysomething women who have burned themselves out doing too much for too long…ummmm? Wasn’t sure what to reply during that conversation.
I get sent for two days of testing called a Functional Capacity Evaluation. The gentleman seemed nice . Seemed like he really wanted to help and was remaining non biased. I’ll save clarifying my use of the word “seemed” for another day.
How ridiculous does this sound? I kid you not……
Phone call from insurance company, “we got the test results”. She starts reading them to me:
Standing 30 to 45 minutes at a time with opportunity for rest breaks as needed
Minor amounts of level walking up to 6 minutes at a time
Bending/stooping minimize avoid stooping with the exception of very occasional mild repetitive and/or prolonged stooping
Crouching/kneeling restrictions from performing this action
Climbing ability to perform on a rare basis
Strength Pushing, pulling, lifting and/or carrying limited demands only (avoid more than occasional strength activities)
Lifting bilateral 10 lbs on an occasional basis
Lifting unilateral 3 lbs left arm, 5 lbs right arm
Carrying bilateral 10 lbs on an occasional basis
With each thing that she reads, my heart sinks more and more. I am not happy about not being able to work. I miss my job, I miss my customers, I miss my team.
My husband is hearing this from the other room. He’s thinking the same thing as me. This news sucks!
Here’s where it becomes laughable (well it would be if it wasn’t such a serious matter). “Good news” she says. I swear as God is my witness that’s what she said. I’m thinking what? My husband actually says out loud “WHAT?”
How is this good news? Wait for it….and the punchline is….
“You can go back to your occupation as a retail manager”. We’ll pay you for December & January while you look for a job.
PS- Wow I’ve been typing this post since Jan 16th. FYI test results were that I was able to type for 9 minutes of 30 the first day and 6 minutes on day two.
