Brain Problems

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I have exactly ONE PERSON in my life who has done the research and offered his help. Out of so many who could use their brains, my cousin chose to use his.

No, the title isn’t meant to indicate an actual health issue. Not that I’m aware of. However, Fibromyalgia Brain Fog, also commonly referred to as “Fibro Fog”, has really done a number on me this month. It was slowly progressing, but now I feel dumber than a box of rocks with twelve piles of shit on top. It’s scary, freakish, and makes me feel terrible about myself. Only another sufferer can truly understand how much pain this puts me in.

I know these are common daily occurrences for a lot of people who struggle with Fibromyalgia and other auto-immune diseases, but my incidents have been sporadic and easily managed, up until now. This weekend has pretty much brought me to my knees on the memory front. 😦

If you ask me about something from when I was two or three years old, I have complete recall of the entire moment. If you ask me why I tried putting black pepper in the freezer, I’ve got nothing. If I didn’t set the timer on the stove, I’d walk away from preparing meals and never go back (I ALWAYS set the timer, even if it’s just ten minutes, it’s loud enough to bring me back in order to focus.). I have to be 100% in whatever it is I am doing, otherwise I am going to end up cutting myself, burning myself, or forgetting what the hell I’m doing to begin with. There is nothing normal or acceptable about this.

To add insult to injury, I put notes on my phone as reminders for pretty much everything. I take this phone with me wherever I go, and yet, I still forget what the hell I’m reading and end up deleting at least 50% of the note before I’ve left most stores. It’s utterly pathetic. It’s also sad, because I’m tired of searching cabinets and the refrigerator/freezer for things I forgot to buy. I then add the missing items to next week’s list, only so the cycle can continue on in an ugly manner. I have to start each list with cat food and cat litter, otherwise it’s entirely possible I will forget one, the other, or both. This past weekend, I forgot the litter. The plus side, there’s 20 pounds of it sitting near the litter box from the weekend prior, so all I have to do is change the damn thing. The fact that I can even lift 20 pounds these days is miraculous to me. 😦

I think I would be better able to cope with this lack of brain function if I were over 75 and had achieved all of the things I set out to do with my life. I’d be able to say “Hey, I’ve lived longer than my parents. I’ve accomplished all of this. I’m simply getting older and forgetting things. It’s not the end of the world.” However, I’m nowhere near 75, not even close, and yet, my brain is suddenly turning to mush. I tried refrigerating herbs when I was cooking earlier (obviously, that’s not where they belong). As soon as I realized what I was doing, I nearly dropped all of them on the floor and burst into tears.

These incidents are made worse by the criticism of others. “Do you even have a fucking brain?”, I was asked earlier this month. “You really DO live in your own world.”, I was told the other day. These are things I’d never say out loud to someone I know is sick, leave alone healthy.

If you have someone in your life with an autoimmune disease/disorder that affects their brain function, I would like you to walk a hundred thousand miles in their shoes. I want you to spend 365 days in their body before making a single derogatory remark in their direction. Our ears are fine; we can fucking hear your offensive, rude negativity. However, if you don’t understand the illness itself, shut the fuck up. You’re not making the situation better, and how you treat someone is just as important as how you speak to them. Unfortunately, we live in a world where everyone wants respect, simply for existing, but they don’t realize their behavior is what garners respect. Moreover, we all express our feelings differently. I prefer to say a lot of things to people privately, eschewing public professions. Some people seem to have a deep-seated need for the public professions though, and it baffles me. Just because we live in a selfie-filled world doesn’t mean every single thing we want to say ought to be made public.

You can argue that by writing it, I’ve made it public, but here’s the thing; I didn’t name names. I rarely, if ever, do. I talk in code with my friends, we have our own private language, and I write in code a lot of the time, too. You get the gist of it, obviously, you just don’t have faces and names to attach to what I’m saying. It’s like reading a book. You get descriptions of characters, but you are left to your own devices as to what they might truly look like if you met them on the street.

So, even with my “brain problems”, I don’t have “writer problems”. Thank G-d and Goddess for that!

copyright © 2016 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.

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Shutting Down

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In more ways than one.

I’ve had roughly six pain-free hours in the past two weeks, so bear with me. I could never say “I hurt.” enough. 😦 That’s not even the appropriate terminology for what I’ve been experiencing, and I hate it.

Pain isn’t always physical. For me, it often is, but sometimes pain is also emotional. I don’t care who you are; we’ve all been there. Whether we care to admit it or not, it is a fact of life, in varying degrees. No one lives a supremely happy existence 24/7. If they do, they aren’t human.

I hate making plans for a day, or even two consecutive days, and not being able to do much of anything, save washing my face, brushing my teeth, caring for Cat, Kitten, and OGK, and doing simple things, like a load of laundry, or cooking a meal. I know for some people, the thought of cooking a meal as a Fibro/Chronic Pain patient means “heavy duty work” (and it’s something so many of you have told me you no longer do, for various reasons.), but for me, it truly is simple nine times out of ten. If it were too much for me, I wouldn’t do it. If I couldn’t do my laundry, it would simply pile up. There are days when I just want to walk out of the house and not come back. Far more than I care to admit. The past few months, I have felt that way a lot. More than a lot. It’s been a daily struggle.

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It’s unbelievably lonely living in a state where you only know three people, where you’re almost completely isolated, where the TV and your laptop (and the cats) are your best friends. It’s not just lonely, it’s sickening and pathetic. But here are the facts: I am not a joiner. I do not talk to strangers simply to “connect” with new people. That’s not me. I am not a small talk kind of chick. I will not discuss nonsense with anyone simply to have something to run my mouth about. You’d think some people would appreciate that level of depth, but instead, people simply see it as me being unpleasant, a bitch, or any number of other things that aren’t true. Ultimately, the truth of the matter is, I am too honest. I lost my filter many moons ago, so if you ask me a direct question, you may or may not like the answer, but that’s not really my problem.

I make an exerted effort to pull back on my temper and be supremely polite and engaging, but if a situation really doesn’t involve me and there’s nothing for me to say, I will quietly observe. The last time I checked, this was not a crime.

I’m hurting, and no one sees it. No one cares enough to do so.

I want to sit, eat chocolate, and cry until I cannot see. Perhaps I have not received the support I need because this is the first time I’m voicing the distress I feel, but come on?! How blind is everyone?! Things are so bad in my life at this moment, I have no idea how to pull myself out of the mess that it is, and yet, all the outside world is going to see is the girl with the makeup on who forges ahead. I could be bleeding out of my eyeballs, but no one would notice that, not unless it started spraying everywhere which, I agree, is completely unsanitary, despite the fact that I am free of blood borne diseases.

My attention span is so poor that it has taken me several months to finish a book I would normally read in a few hours. I cannot watch an hour of TV in one sitting, because my mind wanders and then I have to rewind it back to where I was initially paying attention. And yet, I somehow managed to sit through one of the worst movies EVER (I’ll tell you which one if you ask nicely.) in two sittings, desperately waiting for the fucking plot. Guess what? There wasn’t one, it was absolute garbage. I’d like to get that two hours of my life back, along with three hours from a few years ago that I had to spend dealing with a family member’s meshugas. I’ve since stricken this person out of my life much the same way Ramses tried to strike Moses out of The Ten Commandments (If you haven’t seen this movie, shame on you.).

Too often people refer to their autoimmune diseases and mention how it deeply affects their brain function. They are 100% correct in that it does affect our thought process, among many other things. There are moments when I feel like someone has erased huge chunks from my mind, yet I can recall other things with perfect clarity, to the point where it’s terrifyingly eerie. So, call it “Brain Fog” or “Fibro Fog”, but whatever it is, I definitely feel it more often than not. Last night, at dinner, I momentarily tried to figure out where the piece of bread came from on my plate. I’d been eating not ten seconds before, but I drew an absolute blank staring at this small piece of bread, one of my absolute faves, because I couldn’t recall it being there. I catch myself mentally checking out, shutting down when I shouldn’t, and it’s a miserable feeling. Don’t ask me what I did this week because, unless I wrote it down, I haven’t the foggiest fucking clue! 😦

Before I forget, I want to discuss someone being attacked for suffering from Lyme Disease. I absolutely HATE IT when hundreds of people come out of the woodwork and accuse a fellow sufferer of an invisible illness of faking it “for attention”. As if! Yes, there are people who DO fake all kinds of illnesses, but this person is someone with integrity. She’s not creative enough to make this shit up, and she so desperately wants her old life back that there’s no way in hell she’d put herself through a “fake illness”. It’s not gaining her anything, being sick, so for people to think that and make their accusations public pisses me off.

Lyme Disease is a complicated son of a bitch. It can happen to ANY of us at ANY given time, so only the ignorant are the ones wasting time judging. Lyme can lie dormant for YEARS and is one of the largest, growing epidemics in the world. If caught early, you can be treated with antibiotics and go about your life, but if the disease has been in your system for 10+ years, it is going to take its toll. Most people have no reason to be tested for it, but I’ve been tested for it on a regular basis since I was eight. So, I know precisely what I am talking about.

Instead of allowing fellow autoimmune sufferers to be bashed, we should be banding together in support of those who hurt the way we do. Being a good person means doing a little research sometimes. Being a good friend means you do the research when your friend is suffering, and by no means do you allow others to denounce their pain and suffering. We all know that our symptoms can be co-morbid with other illnesses, it’s a fact, but the next time I hear someone disrespecting a fellow sufferer to the extent that this person has been attacked, I will seriously open up a can of whoop ass on those doing it Steve Austin stole that line from me back in the day, not the other way around. 😉

Now that that’s off my chest, the weekend is here, it’s freezing, there’s a little snow on the ground, and yet, it will be 70 degrees on Wednesday. I kid you not. I am already taking allergy meds, so I suspect this Spring might very well be the death of me, and really, I was hoping to just drown myself today around noon. 😦

Patient X was scheduled to undergo another procedure, but it has since been postponed indefinitely. Hopefully I will get to see him for Passover, if not sooner. I’m sending out prayers in advance to my best friend’s father, who is scheduled for heart surgery in a few weeks. Scary, scary shit. 😦

I am off to do wild and crazy things, like contemplate sleep (or watch the rest of The Originals, you’ll never know which! LOL.) and/or hunt down a cupcake.

Be good to one another. Until next time,

L

© 2016 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.

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