I’m not sure if it’s a weather thing or a “me” thing.
Outside it’s overcast, with a hint of rain and the almost fresh smell of an approaching storm. Or It could be, the change of seasons creeping closer with their shorter daylight hours.
More than likely it’s a combination of the weather and of my near-constant guilt these days wearing me down.
There is this disconnection between me and the goings on around me, like I’m living on a different plane of existence than everybody else, one step down, and separated by a veil of darkness and despair.
I’m sitting on my front porch in my ratty black housecoat and flip-flops. I haven’t showered in at least a week which is evident by my greasy hair that’s pulled back into a stub of a ponytail. The bags under my eyes are impressive.
I’m feeling confused, bitchy, out of sorts, and wondering why this has become my life.
Fibro…began in 2005, on a blustery winter’s day.
I was on my way to my contract- job.
The weather here in South-Western, Ontario was crap. The wind gusts would push you off the road whenever you were exposed to the wide open spaces of flat farmland between houses. The roads were covered with black ice, but you couldn’t see the road for all the blowing snow. I despised driving in that kind of weather.
I would get to the flat fields and have to hold the steering wheel against the gusts, and as soon as you got to a house or other sheltered area you would have to quickly adjust for the difference. Nearly my whole drive was like this. I was blown off the road, and as I tried to correct the shift, I hit a patch of black ice.
I spun around a couple of times before nose-diving the van into the ditch on the opposite side of the road.
Thankfully traffic was almost nonexistent. I suffered a severe whiplash. And that triggered the beginning of my symptoms.
I try to do my best, but I know it’s not good enough.
With the cocktail of Anti-Depressives, anxiety pills, sleeping pills, and pain medication you would think I’d be either in a blissfully spaced out vegetative state, or the flip side, racing about, in constant motion as if I were drunk on caffeine, am I right?
But here’s the thing, even with all the ‘medical intervention‘, I feel like I’m barely hanging on by my broken fingernails.
They say that Fibromyalgia is not a progressive illness, but I beg to differ. The symptoms are forever changing in both severity and location. The fiber that is your body, is attacking you. Every nerve ending, licking like flames.
My husband Mark, who is an absolutely wonderful man and has been with me through everything, is starting to show the cracks in his veneer. It has not been an easy road for My Love, My ‘caregiver’, my partner in crime for the last 24 years.
Neither of us signed up for this, it just…is.
I wish it weren’t so hard for him. I see the added stress, accumulating on his soul. It has changed him.
Every single day I wish I could set him free, to enjoy the rest of his life, but I’m selfish. I couldn’t survive without him, and he’d never go anyways. That’s not who he is. For better or worse, in sickness and in health. Those vows we made to each other the day we got married he would never break.
He tells me I’m his whole life, as he is mine.
The unimaginable guilt I feel every single day, in every task, he does that used to be my domain, my half of our partnership, goes deep into my heart like a hot fireplace poker, branding me. Every poke releasing all of the self-loathing, bad wife, worse mother, terrible housekeeper, waste of time and space negativity, into my body and deeper into my brain.
Pain does this. It attacks the physical, emotional, and spiritual pieces of me, making it so hard to get a grip. It is a vicious cycle. My horrifying reality, that after 12 years it hasn’t gotten any easier for either of us.
I do have some good days, and I cling to them. Make the most of them.
I do everything that I haven’t been able to help with. I zip around like a hummingbird, attempting to make our house feel like a home again.
There are feelings of hope that flow into my heart, filling in all the holes of self-hate, encouraging and allowing me to believe the possibilities, of getting back to who I used to be. I can go for hours and hours on those days.
I can get shit done!
Unfortunately, I pay dearly for it. For overdoing it, not pacing myself, not doing one small task at a time. Not Managing my self better.
But nobody understands how difficult it is for me to do that. When those precious days appear, I need to make the most of them. I need to feel like I am still a contributing member of my family. I need to feel like I still deserve them.
I worked a full-time job for the first 7 years of my new-normal, medicating myself just enough to still be able to function at an office job, then morphing into a useless blob, and in bed by the time I got home.
In 2012, due to “company restructuring “, my position became obsolete, and I was given my walking papers.
It hurt. There was no warning.
The shame of having your co-workers…your friends, watching as you clean out your belongings was tough. I sat in my mini-van, that we had bought just 2 months prior, in the parking lot, sobbing about my failure and waiting until I could safely drive home.
That was in February.
In hindsight, I was missing more and more days near the end.
To just shower in the morning and get ready for work wore me out. My arms weighed a thousand pounds as I lifted them up to blow dry my hair. I couldn’t even sit up straight….it took too much effort to keep proper posture.
I suppose it was a mixed blessing.
If I hadn’t been let go from my job, I wouldn’t have been wallowing in my own misery and could have missed it.
I found the lump that December, but that’s a story for another day.
My mind is now mush from my ‘pity party of one’.
It does help to be able to vent and share my experiences. Maybe it will even help another person, in a similar ‘place’ know that they are not alone.
A ray of hope pushing through the clouds. Peace🌈