Embittered bouts of Jealousy

I woke up bitter this morning. It took me a while to evaluate my emotions to realize I’ve been hit with one of my moments of embittered jealousy. The trigger was something  completely benign in regards to the typical causes of jealousy. In fact it was something completely arrogant and rude of some guests visiting my neighbor for some kind of party.

We live in a cul-de-sac but we have the luxury of no real neighbors to the left, only a fence for a walking path and some greenery and to the right is an additional driveway, a bit of land and then two homes further around the cul-de-sac so we have most of the circle to ourselves. There is tons of street parking because of it. The neighbor closest to us was throwing some kind of party and they had an abundant amount of guests lining the streets with their cars. One of those guest decided she would park on the street but directly in front of our driveway, blocking our ability to reverse out of it, and we had a car parked in the drive. I was shocked that someone would even consider that a valid option and block a person from leaving their own home. How very arrogant and rude. How she has the audacity to even think it’s remotely ok, especially without so much of a request to the owners of our home (us), just blew my mind.

Normally car free, our almost private cul-de-sac

So of course I did the neighborly thing and threw on my boots, in the same baggy sweats, sweatshirt, and beanie I’ve worn for days, and trudged outside raising my voice to the two ladies I saw about to enter the home, hoping to get their attention so I wouldn’t have walk all the way over, with aching legs and a stinky body, but alas, they heard me on my third attempt at hello or hey or whatever it was I yelled, while heading their way. I told them to let whoever parked in from of my drive, know to move their car. One of the ladies spoke up and apologized and said it was her car and she THOUGHT we would have room to still back up…..  Umm, there’s only a few feet and I’d have to reverse drive through my YARD in order to hopefully squeeze out of the space and not hit my mail box. No. Not happening. She begrudgedly moved her car, parking in front of the neighbors drive instead.

The lady was pretty. She was dressed us and carefree, had been laughing with the other lady as she was about to enter the house, a house full of friends, light and laughter. I was too busy stewing over the high and mighty disregard of other people’s property to think anything else in those moments.

Yea, I called her a dumb ass. I love my Ring doorbell.

So the next few minutes were spent gossiping with my mom and hubby about the stupidity and self centeredness of people in today’s society; a nice break from  the normal mundane topics of conversation when you’re stuck behind four walls for days and years on end, until the next idiot decided it was her turn to block my driveway. Though I will give her a tiny amount of credit, she wasn’t blocking it near as much as the first crouton; she did pull as close to the second driveway as she could, but having said that, the space between my two driveways are NOT a parking space nor is it enough room to hold even a half a car, unless you have a tiny bug or fiat.  This time I didn’t see anyone outside to yell at. So I got hubby. Hubby refused to allow me to walk all the way over there since he knows my legs are fairly useless betraying appendages that hurt to use. The lady came out and moved her car….

Just park that anywhere…..

Again we had some lively discussions about the topic.

So I woke up this morning feeling bitter. It took me a moment to realize that bitterness was due to the parking escapade the day prior. I recall in one of those moments when the lady was walking to move her car (The first one) that she walked with a purpose, she was dressed up, her hair was nice, she was pretty and she walked comfortably. I was that woman once. I was that woman. I was that. I was.

No one understands the simplicity of simply walking. Being able to dress up, go out, carefree, live life, enjoying the moments, simply being… Until those moments are an unbearable struggle, riddled with pain and fatigue and exhaustion, it’s so simply taken for granted. My life is changed. My husband’s life is changed. My kids life is changed. We are changed.

Gone are those moments. Gone are those days of exploring the world, going out, family gatherings, spontaneous adventures, enjoying the amenities around us. I am jealous. I am bitter. This is one of those days when the clutches of these diseases pull me under, chew me up and spit me out. When I realize my yearning for a normal life are hiding below the surface of my simply existing, wasting away, drowning in my pain, fatigue, and disorganization.

I want to dress up again! I want my husbands eyes upon me, devouring me, lusting me, enjoying our days, lost in each other’s arms and forging our own path in life, together, carefree. My body is gross. Gone are the curves that frame my body, the muscle that fills my limbs. My clothes hang limply, my skin sags, my muscles gone, my strength, my spark.

My kids are alone, finding their own way and stealing moments at a time with me when my brain isn’t overstimulated and overwhelmed by the sights and sounds around me. Gone are the days we enjoyed each others company, attention, energy, chasing each other around the house in a game of tag, hide and seek, going out as a family, tickle monster… Mr. Boogie…

I’ve spent many moments longingly observing others around me on the rare moments I leave my house. The jogger running down the street, the lady walking her dog, the friends laughing and enjoying their time out. I am jealous. I’ve allowed the bitterness to take hold this morning. My moments of anger are few as I know it will do me no good wasting my emotions on things I cannot change. I should focus on those positive moments and what I can do but pain is crippling and when my flare is ripping every essence of relaxation and peace within me, those moments are hard to grasp and hold on to. I don’t stay at the bottom of my mind for long. I know it’s a slippery slope of toxicity that can rip inside me and hold me within it’s clutches of darkness, spinning me further away from myself and stealing what remains of my existence.

I’m only 40. In my prime. Why me? Why have I had to spend a lifetime of suffering of pain of disability? It’s only gotten progressively worse with time. I always wanted to be one of those blue haired grannies, purposely dyeing my hair and wearing funky outfits, dancing to the beat of my own drum and entertaining those around me, enjoying life and being outspoken, sharing my wisdom and mortifying my grandchildren. Will I even live long enough to see those grandchildren? Will I even get to see my kids grow up? Knowing that I may not even walk if I do, as walking is difficult to me at 40, I have a wheelchair and scooter and how the hell am I ever to find myself dancing at a ripe old age with blue hair and funky clothing if I can’t even walk at 40?

These are my moments of bitterness. Of Jealousy that sneak in and take hold, catching me off guard and bringing me down to a pit of despair. If only they knew how easy it is for them. How simple their lives are in regards to something as simple of walking. How those moments can so quickly be snatched away forever changing their lives and altering their future.

These are my moments. My bitterness. My jealousy.

 

Disallusioned

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The first time I sat on a store scooter, my insides trembled, my face was probably reddened, and I had butterflies swimming about in my stomach. I wasn’t even 40 and there I found myself at Lowes, sitting on a scooter, about to attempt my first experience with the beast. Was anyone watching? Were they judging me? Accusing me with their eyes, thinking, “I didn’t look sick.” As of this point in my life currently, only one person has ever cast judgement on me, making sure to repeat herself for my ears to hear her critical judgement and self righteous voice assuming I’m simply enjoying the use and being lazy at the expense of those, ‘truly disabled, such as her husband who was missing a limb.’
It was horrifying and liberating all at once, the first time I used the scooter. I was able to actually explore the store once again, taking my time to do my shopping and browsing and able to actually attend it vs sending my husband to do my bidding. I’m the handy one. The one who loves to do projects, remodels, constructing  and using my tools. My husband is my muscle, even more so now since mine have betrayed me.

It’s the hardest thing ever to give up the control over one’s own life. To ask for help when I’ve always been the one to give it, never having to be asked but jumping in with both feet and taking care of those around me. Why me? Why did it have to happen to me? How can we manage when I was always the one for them to rely on and now, I can’t even rely on my own self for my own care taking. Hardly showering unless necessary, the exhaustion from the task too much to deal with when I need my energy for other tasks.
I never truly understood how mental exertion could add an added cost and strike a solid blow to someone no different than the cost of physical exertion. How can that be? How can simply planning and organizing and handling research and even simple tasks with the mind cost so much to the body?? How is that possible!?! But that’s what it is. When flared up so bad and dealing with the post exertion I find even a simple phone call to be bothersome and all consuming. I find myself pushing off even the simplest of tasks, stacking the list even higher as things get avoided. It only adds to the anxiety of the ever growing list and the incompetence I’m feeling.

How does one ask for help? How does one relay to their doctors how truly bad it is? How do I paint the picture of my everyday life without them assuming I’m looking for a handout, lazy, a payout, taking advantage of the system when once again, I look so damn normal. Sometimes I envy those who’s limbs are twisted and deformed, a visible illness unquestioned by their audience and one less issue to contend with to the sufferer. I should be happy that I look so well. That I don’t have the pity of those who look down upon the ill trodden but instead, I find it counterproductive and frustrating to have to explain what I feel inside when my body betrays me.

How does one articulate the overwhelming fatigue and pain one suffers when pain can’t be measured by the untrained eye? When so many do take advantage of a system in place to help those who suffer making it even more difficult to be taken seriously and fighting to be heard and believed and understood. I take comfort in knowing there are others like me. We suffer alike, together, in solidarity of the illness we suffer. It’s crushing.

to be continued…