i have been sick for so long now, it almost feels normal to me, and this is not even the beginning of my health catastrophe, it actually started about 10 years ago but i was in remission for about 4 years. now it is back with a vengeance that can only be compared to a scorned lover.
it is strange the way different ppl deal w illness. i have seen ppl wallow in the flu like they have been stabbed in the gut. i have seen ppl who had appendicitis who were capable of walking around and laughing even when their appendix was so swollen it ruptured. everyone deals with it differently. sometimes it is a cultural thing. showing pain in some cultures is a sign of weakness, i honestly don’t believe that is the american view of pain but for some reason that is my reaction-bite through it, rub some dirt on it and keep going no matter what.
everyday i get up, at least attempt to clean the house, cook, do laundry, play w plants, etc. no matter how incredibly horrible i feel i try. i don’t want to lay in bed all day and do nothing. i don’t want to feel worthless. but that is how i feel. all that i am is manifested in what i do, and when i can’t do i feel as though i am failing and losing myself to this illness. but the doing is causing me to rapidly become more ill and bad things go down like me passing out or falling down or trying to talk and jibberish just spewing from my lips. i can’t even go for a walk alone. “she might fall down! go with her!””stop cooking! you’re just going to hurt yourself! i can’t pick you up off the floor by myself!” while i know they love me and want the best for me and don’t want me to end up breaking a bone or going into a seizure, they don’t realize at all how i feel by not doing. the pain never stops, it is relentless in it’s constant presence, therefore being in bed doesn’t so much make me feel better, it makes me feel worth nothing as a person.
i have seen so many drs over the years, general practitioners to holistic healers to specialist in every aspect of the human anatomy. i have been poked, prodded, probed, had tubes up my ass and down my throat. i have had xrays, catscans, mri’s, nerve conduction tests, eeg, ekg’s, sonograms, blood work more blood work and then more probing. drs have yanked and touched and pressed and felt all over my body. and still there is nothing they can do for me. nothing is conclusive. sometimes a part is broken, then we start to investigate that broken part and just like a car at the mechanic suddenly the part is running just fine, despite the testing showing differently 3 days prior. the first example off the top of my head about that is my thyroid. that is a little organ on the side of your throat that releases chemicals to help regulate metabolism and other fun stuff. when tested in the drs office my thyroid was way off, so the dr sent me to the lab where they tested to see which of the 3 main hormones released by the thyroid were off, treating this is through hormone replacement of the low hormone. they tested my tsh, t3 and t4. they were all within the normal range.
it is never reassuring when the drs look at you and shrug and say “well i dunno….” my drs aren’t even able to treat my psoriasis which is visible and examinable and they are able to look at it and touch it and all that diagnostic jazz they love to do. so you can only imagine what kind of hell i get from an invisible illness. there is alot of shrugging, and alot of trying out new meds in a hit or miss fashion. which just makes me more ill. so when i am told “i think you should see the dr again” it drives me insane. i am treated like a possible lunatic by my gp. he has no idea what this is and has flat out said that. i have no faith they will find anything. they may give me some new medicine to take that will make me puke but that is just to cover up the symptoms they can’t fix. i am tired of this bullshit. i am tired of hearing there is nothing we can do for you…it is exhausting and disheartening and i just can’t seem to gather the strength to go through it right now.
i am averaging at max 4 hours of sleep in a 24 hour period. this sleep is never consecutive, it is always in spurts of about 2 hours at a time. some nights i wake up crying from the pain, some nights i just can’t get comfortable at all. i take massive amounts-like way too freaking much-benadryl and an herbal sleep aid called alteril. i take at least 200 mg of benadryl at a time. it’s not good for me, i know that, i can only imagine what blocking all my histamine is doing to my immune system, but not sleeping is not an option. after about 3 days the brain begins to hallucinate and and is completely muddled. i cannot afford that. it is terrible and hurts everyone around me.
i can’t keep down food. somedays i can keep down graham crackers, but that is some days. i try to eat real food, you know like beans and rice. but i can’t hold them down. the dr said it sounds like an inner ear thing(?) so i got a new medication for that and it just makes me pee bright neon green-which was cool to begin w but it lost it’s novelty quickly and it just sits in the med safe. sometimes he will be generous and call me in some phenegran but only the baby dose-which i have been on so many times the baby dose is ineffective so i have to take two pills for them to hopefully stay down long enough to do some good.
somedays i just don’t feel up to the fight. i am tired of fighting. i am tired of losing. i am just fed up with the whole business of illness. i don’t want to be on pain pills, i don’t want to be your guinea pig for the new line of drugs, i don’t want anymore xrays or blood draws or fastings. i don’t want to vomit. i don’t want to be so tired my eyes cross. i do want to go for a walk. i do want to cook dinner for my family. i do want to be able to go to my friend’s house or have friends over. i do want to be able to go to meetings with and for my kids.
there aren’t alot of options open right now. i mean really it’s deal with it or die. you can’t just give up. you have to keep on keepin on but today i am not up to the challenge. today i just want to cry and maybe sleep and maybe watch some mindless tv. today i don’t want to go to the dr or go to the er. i was going to make tamales today but i am running a high risk of falling due to exhaustion and i don’t want to have to fight w anyone not to call the ambulance service. so fuck tamales today. i just need a day where i can feel sorry for myself and break down wo having to apologize for it or worry that it will hurt someone else or make someone else cry. i guess that is pretty selfish, and i think it’s a pipedream. bc if i show even the smallest sign of weakness i run the risk of losing the ppl i love. but i am not making tamales and hopefully i will keep my brave face on for the rest of the day until they all go to sleep then i can cry.