Part of falling apart means picking up the pieces, even if “the pieces” are, in essence, yourself. It’s not an easy step. In fact, it is being made far worse for me by external forces; all fighting to control me because something is lacking in their lives.
When you are forced to rebuild your life, it simply doesn’t happen overnight. It takes time. Unless you happen to hit Powerball or the Mega Millions, it is a lengthy process. Nothing is immediate, because nothing is handed to you.
You do not intend to diminish in capacity health-wise, but even the healthiest person needs time to fall apart and put themselves back together. You don’t intend for things to wait, and wait, and wait some more, but quite frankly; you’re fucking SICK and you know your limitations. Unless people are willing to be physical participants, they can talk ’til the cows come home, it doesn’t help matters.
No matter how many times I ask for help, compassion, or simply to be treated like a human-being, I am met with questions and excuses. The underlying questions are often unspoken, but I can hear projected thoughts. It’s a rare gift, so don’t direct a thought at me unless you want it heard and/or dissected.
Over the past few months the projected questions have been, “Is she really as sick as she says she is?”, which questions my character and is NOT okay. I’ve never made up an illness in my life. As a child, right into my teens, my mother would take me to the doctor immediately, no matter what. If ever I thought I was trying to get a day off from school, as children often do, I’d always end up in the doctor’s office. Every single time, something was legitimately wrong. Not once did the doctor say “Oh, she’s fine. Maybe she just didn’t want to go to school today.” Nope. It was always “It’s a good thing you brought her in, she has a double ear infection and what looks like strep throat.” or “She’s running a high fever and has bronchitis.” There were other things that were far worse. My body would clearly speak up to be by saying “Today is not your day.” and when you’re young, all you can really say is “I don’t feel good.”, and explain what is physically hurting. As an adult, you can explain things much more clearly, providing someone is listening and gives a damn. I woke up one morning on day two of a killer migraine and wrote “This is not how I typically feel during a migraine. I do not feel like myself. This has never happened before.” I keep notes for each migraine in the migraine app I use, which helps me track my headaches and pain better. I keep notes in my food journal, because it helps me process information about my overall health, and whether something affected me on a dietary level or not.
Another recent projection: “She looks fine, so she must be.” Do I REALLY?
“She did A, B, and C today, why can’t she also do D?” Because there is a grand conspiracy, that’s why. <rolls eyes> It’s important for me to know my limitations on any given day. If I can lift 100 pounds one day and cannot get out of bed for a week, then that is the price I have to pay for lifting 100 pounds. It’s not selective, and no one has the right to judge it.
There are so many things projected at me, but it’s far worse when said behind my back. If you cannot say something to my face, you’re a fucking coward. I don’t care who you think you are, that’s the truth. Two, be careful what you say to my face. I may not respond, but I am cataloging every.fucking.thing until D-Day. You are dealing with a time bomb, and you don’t want to be around when I finally lose my temper. I do a LOT to keep it in check. I try very hard to filter my brain-to-mouth ratio, so as not to offend people who don’t know me very well, but I’ve been biting my tongue for far too long. Someone is going to get hurt when I finally stop biting my tongue and cease holding back, and it’s not going to be me. I often say the pen is mightier than the sword, but my words are my sword and shield. What other people can do with nonsense to dredge up drama, I will do with truth. People tend not to like that, but I prefer to be myself. If you’re looking to commit suicide via words, then step into my office. I’m happy to use everything in my arsenal.
I have learned not to lower myself to the level of others to give in to their desire to be hateful and/or cruel. Once I’ve seen your true face, that’s about as real as it gets. You’ll never be able to hide behind anything ever again, because I’ve seen you. I know what you are. I may keep it to myself, but I usually have a legitimate reason for it.
When you behave a certain way, this is what comes to my mind: “Quod me alit, me extinguit” which means “What feeds me extinguishes me.” Another one that comes to mind is “Quod me nutrit me destruit” which generally gets interpreted as “What motivates can also consume from within.“, though it means “What nourishes me destroys me.”
I used to talk quite openly about being fueled by hatred. It helped me see clearly, helped me be a better person, because I saw how hateful others were and didn’t want to be like them. I saw such ugly behavior all around me, and I refused to become that kind of person. I choose not to be selfish, self-centered, self-absorbed, or a bad person. I’m not perfect and I’ll never win an award for being angelic or congenial, but I know who I am. I’m not going to kiss anyone’s ass, but I’m also not going to attack someone without just cause either.
Being underestimated, especially a woman, is commonplace. I find it downright hilarious when other women underestimate me. Appearances can be deceiving. The woman who looks like the “girl next door” could very well be a serial killer; one never knows. Judge me if you want to be judged in turn, though quite frankly, I can barely be bothered. I’ve got bigger fish to fry.
I spend my days battling an invisible illness that progressively gets worse, and I am judged harshly for it. No more. I see everyone precisely as they are now, and my shields aren’t coming down for anyone ever again.
There are hundreds of symptoms to Fibromyalgia, depending on how long you’ve had it and how it has progressed for you. I know people who have mild versions of it, and are able to live full lives, despite needing a little more self-care than usual. I wish it were that simple for me, but it’s not. For me, it started with chronic migraines. A year later I was going to doctor after doctor demanding that they find out what was wrong with my neck and shoulder. It was blown off for nearly two years as muscle injuries, until an MRI showed otherwise. I have inoperable damage to my cervical spine. There are only seven vertebrae that make up the cervical spine, and four of mine are damaged. There is damage to my lower lumbar spine as well, a section made up of five vertebrae, and 2-3 of mine show damage. My doctor is unsure how I got that, saying that most people probably have it (lower lumbar injuries) without realizing it because we throw our bodies around on our beds, etc., lift things that are too heavy, shovel snow, etc. I’ve never been that fragile physically, I was an athlete growing up, so maybe he’s right, maybe he’s not, but I will never know what caused that additional damage. I am almost certain I know what caused the cervical damage. I am due for a new set of MRI’s next year. I am not looking forward to any new information on it, especially knowing that there is damage to my tailbone that hasn’t healed properly, but a new brain MRI and spinal MRI are standard procedure for me. I have no choice and in truth, it is better to know now, that way I might finally receive proper treatment.
While chronic migraines may indeed be a side effect of Fibromyalgia, I also know many people who do not suffer from them, and have Fibromyalgia. It was the first symptom for me, but it’s not the same for every sufferer. I have, in two months, gone through nearly three bottles of OTC pain reliever for almost daily migraine pain. Here’s hoping new doctors have new answers.
Physically, I fight a battle each day just to get out of bed and be able to move around. Some days, I lose, but it’s not a failing on my part, it’s me having to come to terms with my body. I already have a booking for the beginning of September, which is great news (The pay, on the other hand, is less than half of my normal hourly rate, which offends me, but hey, I’ve got to be able to eat and pay bills. Even if it’s one dollar at a time. 😦 ), and I am hoping more jobs will come in soon, especially since reading, proofing, and editing are about all I can tolerate at the moment. The person who wanted me to edit 100,000 words in 24 hours, with notes, was delusional beyond words. If they had offered me the correct rate, I might have negotiated it into two or three days, but when the pay is shit, you’ve got to know your physical, mental, and tolerance limitations and say no to things (and people) that will not better you. If it won’t pay a bill or help you do the things you need to do, then it’s not worth it.
I do feel broken at the moment physically and emotionally. I am trying to put myself back together and get shit done. My mother used to say “All you can do is your absolute best, and if that isn’t good enough for anyone, fuck them,” She rarely swore, but she’s right. I am doing my BEST. If it isn’t good enough, tough shit. You can judge me when you’re 100% perfect, and not fighting your body each day. If I were completely healthy, no pain, etc., I wouldn’t be having this conversation, but I am. When people try to pressure you, you have to look closely at their motivation. If it is not a gentle nudge with a genuine, loving, caring heart; walk away. Anyone who wishes you harm or detests you, but refuses to communicate it to your face, shouldn’t be allowed to breathe the same air that you do. Quite frankly, quality oxygen for the viciously rude should never be allowed.
It is bad enough being chained to a body FULL of unrelenting pain. I refuse to be chained to other people’s demands or bullshit.
I am in charge of my life. Don’t pretend to care if you don’t, and don’t say you love me if it’s not the absolute truth. I smell liars all around me. There’s nothing like the smell of reptiles to ruin your day/week/month/year.
Here’s hoping no one has to experience what I have because no one deserve it.
copyright © 2016 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.