Things I Hate About Being So Sick At Such A Young Age & Not Being Understood
Over the past few months I’ve come to realize I’ve foolishly handled the severity of my illness for years. Over the past fifteen months, I have gotten worse. In turn, people’s expectations of me are way too high. They see me power through things I shouldn’t be powering through, which leads them to believe I’m okay when I am anything but. That’s about to change because I’m ready to admit what I can and cannot do.
I cook at least 5-6 nights a week, sometimes seven. I have to stop doing that. I have to stop pushing myself to have dinner on the table like an obedient housewife, of which I am not, because not only do I feel unappreciated in my efforts at times, but I spend 8-12 hours sick as a fucking dog each day (and every day before it) and I’m still dragging my ass into the kitchen each night like a moron. I’m over-doing it.
There are so many mornings and nights where feeding Cat and Kitten makes me want to die. Bending down to put their plates onto their cute kitty place-mats, picking them up to wash the plates when they finally finish (especially Cat, who is SUPER PICKY about what she’s given from one day to the next.). It’s too much. The pain in my spine, lower back, and legs screams in agonizing protest, and like an idiot, I keep going. 😦 There are far too many mornings I drag myself out of bed solely to feed them, and once I’m up, I feel like I should be doing something, so I force myself to do something, even when I am too sick to be doing anything.
Laundry should be easy enough, but sometimes it takes me a few days to retrieve my clothes from the dryer. It didn’t used to. It kills me, because it feels so incredibly lazy. I used to do 5+ loads a week and not bat an eyelash. Now, anything involving stairs makes me nervous. Especially after my experience of getting locked in the basement and having to PRAY the door would open. I called someone when it happened (I try to make sure I always take my cell phone with me) and got their voice mail. I freaked. I had to calm myself in order to get the door to finally open. Ever since that day, I’ve been extremely cautious.
One morning, in some of the worst pain EVER, I stood in the shower and wondered how badly my legs needed to be washed. I had one of those moments thinking “Can I just pour soap on them and rinse, or do I have to bend down? I CANNOT bend down.” It was the worst feeling in the world, because I was already incredibly shaky from the pain and mindful of the glass doors. I’ve fallen in the tub a few times and, by the Grace of G-d, escaped with only bruises and soreness to show for it. I was having immense trouble bending down. Serious trouble. Then I thought “Where the hell is the back brush? How am I going to reach my back?!” I turned the water off and wanted to cry. I stood there for a few minutes, pretending I was letting the conditioner do its thing, but ultimately, it was scary and upsetting. Then, like an absolute moron, I forced myself to be fully clean; legs, back, and all, and after putting on makeup because, for once, I actually cringed at how pale and sick I looked, trekked to three different grocery stores to get everything on my shopping list. At two stores I rang up the entire order myself, bagged each item, and put everything in the car. I did this with physical pain from Fibromyalgia AND a horrific migraine on top of it. I wanted to be on a morphine drip with someone cooking my meals for me. Alas, that never happens. If I want something done the way I do it, I cannot rely on a single soul except myself. My cannon fodder cousin offered to “make me a meal” (When this sick, what are the odds I’m going to travel thirty minutes away for dinner?). I did not have the heart to tell her it would take roughly fifteen seconds before the knife and spoon are out of her hands and I’m the one doing the actual cooking. I’m a kitchen control freak. Every boyfriend I’ve ever had who has tried cooking for me has ended up standing back with a glass of wine because I do not have the patience for how another person works in the kitchen. It usually takes them an hour to realize I’ve completely taken over the entire meal, and the romantic concept behind it. I’m not a trained chef, but I might as well be once there’s a large, sharp knife in my hand and an idea. Let’s leave the good stuff to the professionals. 😉 I’m a picky bitch, just like Cat.
I have no emergency contact. Outside of my brother, who isn’t extremely reliable where I’m concerned, no one knows my blood type, the extent of my health issues, or my wishes regarding anything life-ending. No one has ever even asked me about these things. My cousin offered to be my emergency contact (after lecturing me about wills, trusts, and things that, quite frankly, nauseate me. She thinks it’s practical. She does not understand that I’ve lost two parents and I’m not interested, at the moment, in her OCD practicality.), but I know full well she will NOT drop everything to answer the phone if contacted, nor will she be physically present in an emergency. She means well, she has a good heart, but she doesn’t understand that this is a big deal. She & I disagree on so much, she’d likely leave me a vegetable if left to her own devices. Everyone else, except my brother and best friends, would pull the plug. Yeah, I feel the love, too. <shaking my head in disgust>
The questions I get asked on a regular basis leave me so fed up, I want to scream.. Oh.My.Fucking.GOD! There is something fundamentally wrong with people. If I’m in pain, it isn’t because I had a sore gym day, it’s because I have an incurable autoimmune disease that haunts my every move. Don’t ask me “Is it from your Fibromyalgia?”, as if you truly are clueless. I often want to say “No, I like walking like a 90 year old woman with osteoporosis. Clearly, I’m FINE.” I don’t feel the need to spell it out for you every single day. It’s painfully obvious, no pun intended. It drives me INSANE. “Is that from your migraines?” Really?! I’m walking around saying how sick I am, throwing up, and you’re asking me questions? Don’t. Stop and think about how it makes me feel. You don’t need to make small talk with me over my suffering and then blow it off like it’s no big deal because it isn’t YOUR life or YOUR pain. G-d help me if I ever behave like that when someone is suffering in my presence! I’d be ashamed.
When I have declared how bad a migraine is, PLEASE do not make enough noise to rival a sixty piece marching band so I can spend time with a pillow over my head and ears (still hearing every fucking sound clearly) wondering whether to kill you and tell G-d it was an accident or to go to the emergency room and beg for medical help. Why do people think they’re quiet when they’re actually noisier than anyone else I’ve ever met?! The excessive noise may not be intentional, but it certainly feels like it is. It’s also incredibly disrespectful. If I don’t want to bother someone with noise from anything, I wear headphones. It’s called manners.
There are days I can walk eight miles and feel good, with maybe sore calves later on in the day or the following day, maybe a charley horse, maybe achy feet, and then there are days I am practically crawling to get to the bathroom. Does that seem normal to you? It isn’t.
There is ZERO happiness, joy, or fun in my life. I mean that. For months I have wanted only to go to the Da Vinci exhibit at the Museum of Science. I asked several people to go with me. No one wants to go, so I was actually told “Why don’t you just go by myself?”, as if that’s an easy thing for me to do these days. I explained that without a second person with me, my health is too unreliable to go into Boston and walk through an entire exhibit solo. It closes tomorrow, and I will likely never get close enough to something like it again. Unlike a movie, where I can rent, borrow, stream, or buy the DVD whenever it’s released, this is a once in a lifetime opportunity. Not being able to pick up and go like I once did makes me feel utterly worthless, and I’m heartbroken that I’m missing out on things that are important to me. What is the point in living when you cannot do anything that brings you a small measure of happiness? Who in their right mind would want to live like this?! NEVER tell someone that it’s “all in their head”. You truly don’t have a clue how painful this is.
No one, and I do mean NO ONE, ever asks me what I’d like to do, or cares enough to do so. Every single free moment revolves solely around them. I shouldn’t have to spend a minute in a week crying over how badly I am treated, ignored, abandoned, isolated, or hurt by others, but I do.
My OCD is off-the-charts. I’ve alphabetized the herbs and spices in the pantry, dismantled the interior of one cabinet and put everything back in order, and under normal circumstances my books, CDs, and DVDs are all in alphabetical order based on genre. If I start color-coding my clothes, I hope someone stops me before I get out of hand.
Anxiety is part of Fibromyalgia, though not everyone sufferers from anxiety or panic attacks. For me, it began in 2002, though I suppose I’ve always been anxious in one form or another. Back then, when my father’s cancer returned for the fourth time and he was undergoing IV experimental treatment in the hospital, it triggered off something fierce. It took a full year of breakdowns in the shower, so no one would hear me upset, before admitting I needed to fill the prescription from my doctor and take the first pill. I get horrific panic attacks in my sleep and wake up unable to breathe. My body is constantly in fight or flight mode, and it is terrifying.
I’m a former gymnast. I somehow managed to retain nearly all of my flexibility and upper body strength, but I will likely never participate in a sport again. I miss being about to throw my body into the air and do impressive things. I miss the parallel and uneven bars. I miss the balance beam. I miss volleyball. I miss archery. I miss being able to ride a bike. I miss playing football with my male friends. I miss skating; which was the last thing my Grandfather taught me before he passed away. I miss being the strong, athletic girl I once was. It breaks my heart when I see and feel myself struggling to walk, and it kills me each morning as I struggle to get out of bed.
For several months last year, I would be overcome with severe weakness and would not be able to account for 2-6 hours of each day. Over the past few weeks, it’s started happening again. Am I alarmed by this? Yes. I’m even more alarmed by the fact that my application for insurance still hasn’t be processed or approved! Yes, I will likely go ballistic on someone soon because I’ve had enough of their excuses. They’ve had more than enough time to make a decision, especially after lying to me about the first application for six months. “We’re backed up.”, MY ASS. What little patience I may have had is completely gone.
The cost of the only prescription I take jumped from $21 to nearly $60 in a little over a month. I made a few phone calls and got a lot of bullshit excuses about how the cost to the pharmacy probably went up. I had to transfer it to the only pharmacy in the area that will charge me less than $15 for a prescription that is a generic and older than I am. The worst part? My doctor had given me a new prescription with three refills. It’s a controlled substance, so he’ll now have to redo the script with the new pharmacy, and I’ll potentially be out of the medication by the time he gets around to it. The current prescription can remain on file until the pharmacy gets their head out of their asses! It will also make me worry a little less because that’s eight months of coverage medicinally, which will give me time to find a doctor here, who I am almost certain will try to yank me off the medication I need and have taken responsibly, as needed, for over ten years. If I end up in any type of drug rehab, please know that doctors are irresponsibly yanking patients off of controlled substances and giving us no alternative whatsoever. The “war on opioids” is bullshit with nowhere near the amount of deaths being reported. Heroin is the problem, pain patients are NOT.
I am typing this after 2:00 a.m. I cannot, for the love of G-d, sleep properly. Not without taking a larger than normal dose of Melatonin, for me, any way, and going to bed before 9:00 PM, or just slightly later. My brain is so hyperactive and full of thoughts that there is no such thing as “calming down”. Meditation does not work. Breathing exercises do not work. And it doesn’t take long until I lose my patience and go back to writing, or grab the nearest book, even if I’ve read it fifty times.
Life will never go back to “normal” because this is not something that will go away. While there are vaccinations and cures in the pipeline, they may never see the light of day without FDA approval. Experimental treatments and CBD oil might be the only viable options left to me, and that is solely for the Fibromyalgia. I am currently trying to get into a clinical trial for migraines, but there are no guarantees I will be put on the medication they’re testing, and if I am, I’d have to worry about potential side effects of a medication that is basically making me someone’s guinea pig.
I am not okay. I wish, on occasion, people would dial down their level of selfishness and actually pay attention to the fact that I’m so far from okay, I want to scream. I wish someone would actually ask me how I’m doing, and listen to me. I am so fucking tired of biting my tongue or walking around shaking my head in sheer dismay.
I do my best. Every single day there is someone, somewhere, to tell me my best isn’t “good enough”, to talk down to me, or to treat me as though I am beneath them. I would like said people to collectively live in my pain for six months. I’d genuinely like to watch them “get over it”, “stop kvetching” (“To kvetch”, in Yiddish, means “to complain”. They WISH I complained! I fucking walk on eggshells over how much I suffer, and I’m NOT going to do that any more.), or even better “stop having a temper tantrum like a five year old”. When you do thoughtless, disrespectful things and treat me like I’m not a person, you’re inevitably going to push me to the point where you hear about it. I have scars on my tongue where I’ve damn near bitten through it. I refuse to keep holding it all in.
Where is this so-called “human compassion” I keep hearing about? It barely exists. This is such a selfish, self-absorbed world and it is sickening. When was the last time you did something for someone else without gaining anything in return? Because THAT is compassion and kindness to me. Doing something for someone and then throwing it back in their face is NOT compassion, nor is it kindness. Anyone can be a piece of shit. Try not to be one. No one should have to remind you that normal people don’t behave in such a manner, but I’m doing it because I get treated that way and I’m sick of it.
A few days ago someone forgot who they were talking to and insinuated that I am a “people pleaser”. They must have me confused with someone else because I don’t give a damn about pleasing anyone, but I am NOT going to change the core of who I am, as a decent human-being, to make someone else feel better about themselves. You’re a lousy friend to people? That’s fine; I choose not to be.
The halfway decent-looking girl you see, who took the time to put on makeup, who, after way too many months, got a haircut and touched up her roots (being a brunette isn’t all it’s cracked up to be sometimes) is not “vain”, “selfish”, “obsessed with her looks”, “lacking spontaneity”, or any such nonsense. She is me. I’m sick, I’m suffering, and I don’t have to add insult to injury and look like a fucking corpse, lest some rogue mortician thinks he’s lost a body and takes me away!
If you truly care about me, prove it!
Don’t say you love me unless you truly mean it. And don’t think you can treat me one way today and another way tomorrow. I might not say anything about it immediately, usually to give you time to self-correct and/or apologize, but I will wait for the proper time to let you know precisely how I feel about being spoken to like some kind of untrained dog you keep around.
Not every person is who and what they say they are. Not everyone is genuine. I just happen to be hyper-aware of the motives of others.
I am often short-term forgetful. It’s completely unintentional, yet people actually get annoyed that I haven’t done something or can’t remember something that, once it hits my long-term memory, is pretty much good to go until the planet explodes. Being hostile towards me over a short-term glitch is just plain rude. Especially when these very same people would lose their heads if they weren’t attached. I know where mine is.
I have no choice but to plan, and even my plans aren’t set it stone. I cannot, under most circumstances, commit to anything last minute. People get offended by that quickly, so they stop asking you to do things. Or worse; they keep asking. As if you’re magically going to heal and be able to run a marathon.
The other day I noticed precisely how bruised I am. I usually find bruises on my arms and legs, here and there, but this is bad. I had gotten out of the shower and saw something purple on my back when I moved the towel. I turned in the mirror and was utterly mortified. Each morning I usually ask out loud “Was I beaten in my sleep?” My back is covered in black and blue marks that actually DO look like someone beats me. I’m always saying how much my back hurts, but this is a first. I stared at them and noticed a pattern; they’re from wearing a bra. Is it too tight? No, or the bruises would look much worse. The others are in a spider-web pattern across my shoulder blades and there’s another one low on my back that looks as painful as it is.
It’s been a long time since I’ve been heard, understood, or listened to. This disease has robbed me of people treating me like a human-being.
I never know what else it will take from me. There is no pain relief, there is no end in sight, and it’s scary navigating this alone.
I’m sure there are other things I hate, but today, this is all I’ve got.
copyright © 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.