I can not believe it’s been three months since my last FibroFog post. Wow! Where does the time go?
In spite of multiple lengthy and sucky flares, I really have had a blast this summer. I sure hope you all did too.
These last three months for me, have been about enjoying my hubby, my daughters and my community. It’s been about going new places, meeting new people and trying new things. It’s been about self-discovery.
Did I have you going there for a minute? Of course I didn’t try roller derby, silly.
The hubby, kids and I did however get out and enjoy watching our first ever live roller derby event. Thanks for having us Candy Crushers!
Believe me I was tempted, quite a few times this summer to just give in to the pain. It was bad, a lot of time on crutches. More than once I contemplated backing out of our daily adventures (#StayCay with kids & hubby) but I didn’t.
I’m glad I didn’t. In fact, not once did I regret pushing myself out the door. I am lucky. My family believes me. Even though they can’t see my illness, they accept that it is real.
When I could walk, we walked. When I needed crutches we drove further and walked less. We explored around my fibromyalgia flare ups, and for that I am so very very grateful!
What a fantastic idea my husband had that the four of us staycation together this summer. Perfect for a limited financial budget and a limited supply of physical energy too!
Arggg! Don’t want to jinx it but I think I’m finally putting my latest flare behind me. This was a tough one; I’m talking widespread chronic pain everywhere. Even had to use crutches to get around.
When I was a kid I had to use crutches for a few years. They were like second nature to me…then again so were the painful palms and chaffed under arm areas from using them. I remember thinking…man I hope I never have to use those again.
Here it is thirty something years later. Turns out I did and quite likely will have to again. Silver lining? Seems using crutches is like riding a bike, no matter how long it’s been you don’t forget how to use them. Well, I didn’t anyway.
Enough about my latest go round with chronic pain, how about a little time out for some happy thoughts? Hmmm ok, here are two…my new flamingo ladies that hubby bought me and Buck the guinea pig helping me out with some typing 😉
So I guess what I’m getting at (or trying to anyway) is that though chronic pain is an everyday part of life at least the flares come and GO. There is always some kind of relief (or reprieve) on the horizon.
In the meantime I find that it’s sometimes the silliest things (like my ladies above) that can take your mind of the chronic pain and make you smile for at least a little while.
Hmmm…that makes me wonder, is it possible that my husband and kids realized this before I did?
Lately I’ve been getting some really nifty, silly n’ fun gifts. My desk and shelves are filling up with some interesting goodies that work wonders at distracting me from my constant companion aka “chronic pain”.
My Husband & Daughters make me smile. I really am lucky aren’t I? Right musn’t forget the pets; they make me smile too…
Dee Ohh Gee the dog
Piggly Wiggly the Queen of skinny pigs
Skuttle Bug the bunny rabbit
Rowena the red eyed guinea pig
Gopher the sweetest guinea pig EVER
Gizmo the squeaker guinea pig
Herbert the hedgehog
Buck the typing guinea pig
Bippity Boppity Boo Morgeana George Walter (that’s one name) the skinny pig
Crispy Bacon the skinnny pig – for the record I protested this name!
(the big A) Fibromyalgia (the big F) and Bursitis (the big B) Oh My!
Mix these conditions together with a few other illnesses thrown in and Taaadaaaa! You’ve got yourself a big old batch of widespread chronic pain. Every minute of every hour of every day of every week is painful.
The only things that change are…
What kind of pain (Arthritis, Fibro, Bursitis et al?)
Where the pain is (besides your big F trigger points which always hurt)
How painful on a scale of 1 to 10
In case you haven’t noticed, I don’t like using words like Arthritis, Fibromyalgia and Bursitis (especially the F word). Thus, the nicknames. It’s a way of pacifying the Me that is still in denial and of kyboshing the anxiety these words cause me.
They suck; they’re painful and can knock you flat on your back for days or even weeks at a time. For the sake of “keeping it positive” though, I’m going to call them FAB (which they most definitely are not!)
Who am I kidding? There is nothing positive about having an ever growing list of painful, incurable autoimmune diseases. That being said, apparently (or so I hear on a daily basis)
staying positive is important (life’s dandy, how could I not?)
exercise is crucial (especially if you want to set off a flare or two or three!)
push yourself but don’t exceed your limits (uh and I know my limits how?)
I swear if one more physically fit person tells me the best medicine for Arthritis and Fibromyalgia is going to the gym I will….well, I’ll probably fake a smile while thanking them for their advice. Like I always do.
Anyway, after my latest visit to the Rheumatologist I realized it was time to finally accept that I do have Arthritis and Fibromyalgia.
Acceptance was the first hurdle. Now I’m going to focus on…
Staying upright as much as I can
Keep moving for as long as you can
My quality of life
Increasing my durability
I know I’ll never be the Energizer Bunny® again but I will be the best Me that I can be! After all I am FAB!
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.