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