#and i’m more than a little fatigued today!! idk if it’s from chronic illness or mental illness this time but man. i am wiped out

[lavampira]

wild to me how it was in the 70s yesterday when I wore a tee and shorts to run errands yet it’s supposed to get below freezing into the 20s by sunday. and like. pretty sure it won’t ice or snow unless it rains but still makes me nervous after the big power grid freeze a few years ago :o)

[flockofdoves]

gotta sleep but seriously considering if i should quit this job everyones nice and its only been 2.5 weeks but god my chronic pain and fatigue has been flaring up so much worse between how dramatically different my hours are each day so i never can get adequate sleep and then being on my feet doing physical labor 4-9 hours almost every day and the customers (that much is unavoidable but in combo tho..) i’m been constantly in so much pain and at first i was just like ‘oh its bc im out of shape my muscles are just growing’ but i cant eat or sleep properly on this schedule its constantly rushing you to do something and it makes me so upset because i think i could do fine if i just had like. a fucking chair or could mix up what i do so its not hust constant pressure on my right arm (esp since im short i slice at an awkward angle our tables are taller than im used to slicing on) and if having us understaffed constantly wasnt a well known business strategy bc keeping us high strung and overstaffed and getting out late constantly is more profitable than having adequate staffing and getting out on time without mistakes. and i like that they pay us every week but hate only getting a schedule for the next week like not even 2 weeks even though we have to notify them of absences 15+ days ahead so idk what im doing sunday til thursday evening and ig thats making me more depressed than it normally would because ive finally been hanging out with friends in chicago and then my cousin is visiting who i havent seen in 12 years but i havent had the time to do anything with anyone. mostly though im just in so much physical pain and am constantly sleep deprived and that actually resulted in me bumping a car today (no damage fortunately but i almost had a panic attack in the middle of my street it was so embarrassing i was just parking and had to call my mom to come doen bc i didnt know how insurance stuff worked and so many people saw it)

and i feel so dumb for it ive only worked on shift 11 days so far and have been hired for a little less than a month and all my coworkers are so nice and id feel guilty to leave them when even with me theyre so clearly understaffed even though thats not my fault but god idk how im gonna sustain this. i dont know how to compromise my health and my tendency to flake out when things are hard but here i genuinely think this is too much i just at least want a job i can sit at... maybe even ideally one with more regular hours or schedules with 2 weeks notice instead of one.. but god even that is so hard to find like intellectually its not surprising i know how capitalism works and the reserve army of labor and all but god idk. i guess i keep having hope it might be Somewhat okay for me but its really just so hard no matter what. i dont know how to balance being kind to myself and my body with also freling stupid about claiming i “cant” do it when i know people who are similarly chronically ill who dont have petty bourgeois family who still largely financially support them and so cant quit jobs that are slowly destroying them like this. like of course none of use should have to deal with this but its so scary what does it mean to me to confront that ive seen statistics that 50% of people with both fibromyalgia and chronic fatigue syndrome are unemployed. i wouldnt think it of anyone else but im so useless as a leech on my loved ones and havent even been involved with organizing this past month either

anyways. if anyone knows jobs where you can

sit

not do too much repetitive body motions ideally

will allow me to fit 9 hours of sleep into my schedule each day

i dont need a college degree

have a semi regular or reliable schedule to plan around

i know thats asking a lot out of an “entry level” job rven with my 2 years experience in food service/ordering inventory/catering/marketing/etc from my coop but id love ideas lol. or just general advice i hate this shit so much

[chronic-confessions]

Confession #3,258

Part 1 - no support from family for boyfriend kind of

Ever since day one my parents never have supported me or thought I was “faking” my pain. I used to miss a ton of school because in the morning I would wake up and feel so nauseous and sometimes vomit, I would be so exhausted and still tired or wake up with headaches and be so tired throughout school id fall asleep in class, on the bus, and come home and sleep for five hours once I got home from school. They used to force me to go to school because I had to and the whole time they thought I was just faking it so stay home and sleep in. Then when my stomach problems started coming up my parents thought I was faking it again and complaining about my stomach to go to the doctors and get notes and excuses to miss school. Especially in the beginning when the doctors couldn’t find much wrong with me. Until they did an endoscopy and found gastritis and ulcers and eventually did a gastric emptying test and found I have gastroparesis. N guess what? The doctors diagnosed me with all of this shit in-front of my parents and even showed the pictures of the ulcer and gastritis in my stomach and my parents still think I’m faking it. 

They always tell me how if I “ate better I wouldn’t have any problems” or “ if you wouldn’t of had went vegetarian this wouldn’t of had happened to you” and all of this bullshit. It pisses me off so bad especially since now here I am 20 years old and still suffering from stomach problems having flare ups and now new symptoms where two of my doctors thinks I have some kind of autoimmune disease possibly multiple sclerosis. I sleep so much at least 10-13 hours a day and my boyfriend constantly calls me lazy to my face. I just don’t understand how people can be in the room with me while the doctors clearly is saying there’s something wrong with me and then they turn around and talk shit like they don’t know I have chronic illnesses. My boyfriend literally told me that in the future he’s not going to let me sleep in because I need to be productive and wake up early and cook breakfast and do all of this shit and I actually cried because wtf. I have a ton of anxiety my doctor thinks I’m depressed as well and having no support or anyone to talk to makes it completely worse. I can’t even have sex anymore because majority of the time I get these SEVERE cramps that make me want to vomit and my boyfriend has seen me collapse on the floor crying curled up in a ball in pain and then asks me to have sex again the next day. I stopped working and I know my boyfriend doesn’t like it because he says shit like “ it must be fun to sit around at home all day especially if you get approved for disability, shit lay around and get paid for it”. It makes me feel so bad especially since sometimes I have good days and sometimes I have terrible days. Especially when I have a flare up and I’m really sick for a week this is why I don’t want to get another job. It’s like when I’m sick my boyfriend takes care of me but then when I have a few days where I’m less sick and feeling OKAY to do things he’s like “ why don’t you get a part time job”. Idk like my boyfriend is better than my parents but he doesn’t get it. He has these severe chronic painful migraines and I’m so supportive of him and do everything I can to help him and he should understand how I feel because he misses a lot of school and work because of the migraines but yet when I used to stay home from work because I was nauseous and having abdominal pains he would sigh and just be like “ so you’re really not going to work today?” And just make me feel really bad. I especially can’t talk to my sister because she’s called me a “hypochondriac” multiple times even though she has fucking diabetes since she was like 6 years old she should understand too. I hate how my sister and boyfriend both think because they still push through work and school that I should just “suck it up” and try to live a normal life. Don’t even get me started with the shit people say to me when I mention I want to file for disability. My parents,friends, and boyfriend all say something along the lines of “ you’re fine just get a easy job” “ you don’t quality for disability you just ant to lay around all day” etc. it really breaks my heart and makes me feel so bad that I can’t talk to ANYBODY when I’m sick or feeling sad and want to vent. Something that kind of makes me mad if that my boyfriends mom has a virus that she is fine most of the time but sometimes gets really sick as has to go get blood transfusions and medications in the hospital and stuff and my boyfriends dad keeps her from working and everyone is all over helping her but yet when I have a flare up and having s lot of nausea and abdominal pains and all these other symptoms people tell me to take a tums and get up. Like I have a diagnosis of serious stuff too just because the doctors don’t ever want to keep me in the hospital doesn’t mean it’s not serious. If I’m being honest the times I go to the hospital for pain the doctors treat me like I’m looking for drugs or tell me that I’m “just constipated and drink some water”. Like the way everyone has been treating me has been bringing me down so much and there’s no way of escaping it. 

Part two: I don’t know why my health is so bad for more than half of my life

Ever since I was 9 I’ve been in pain starting with my periods. I was put on birth control and it’s helped a lot so that’s hardly one of my issues now. When I was around 13 that’s when my stomach problems started and now that I’m 20 years old two doctors think I have multiple sclerosis and I’m going to see a neurologist next month. It’s been really hard for me to deal with being in pain all the time since I was young but I feel like I’m almost accustomed to the pain that I don’t show it so much on the outside. Especially when it comes to my nausea I’m nauseous every single day and usually I don’t complain about it because I’ve been nauseous every day for years only when it gets really bad I’ll lay down or hunch over. At least every other day I get abdominal cramps or pains in my stomach or the urge to vomit. My stomach problems have lead to other issues like malnutrition and other stuff. Recently I’ve been having neurological problems that have been scaring me I’ve been getting a lot of numbness on anywhere on my body that pressure is applied. Even for less than a minute my body part won’t even get pins and needles feeling it’ll just go straight up NUMB like can’t move my fingers or my arm or leg feels really heavy shit even my butt goes numb when I’m sitting on a hard chair or if I lean over a table to grab something or do something for a few seconds my arm or hand will start to go numb. Even when I’m sleeping and I’m laying on top of my pinky it’ll go numb. I’ve been getting these shocks of pain in my left hand that make me drop stuff or even have to let go of the steering wheel when I’m driving. I have these lingering headaches mostly behind my eyes or like one side of my head. I have a lot of trouble sleeping and my vision isn’t blurry sometimes it’s hard to focus and I’ve been having these black specks in my vision and lastly I lose my breath really easily and my heart rate shots up for doing any little thing even just shampooing my hair I be breathing heavy and feeling my heart beat in my neck and chest like I feel like I’m going to pass out… and two of my doctors think it’s multiple sclerosis. I just don’t get why I can’t live a normal active life. I used to go kayaking on my good days and it used to make me soooo happy and relaxed even thought I’d be really fatigued from all of the movement kayaking in the springs was my passion and the only thing to completely take my mind off of how sick I felt. Now that I live in Texas and I’m almost having these neurological symptoms I don’t think I would even be able to go kayaking at all there’s no springs to go kayaking here anyways but and I just sit at home all day and feel depressed.

Part 3: worried about my future

I know I can’t go to school because I have a really hard time focusing,concentrating, or remembering things I would fail. In elementary school all the way through sophomore year of highschool( before I left to homeschooling because of my chronic illness) I’ve always had a really hard time with school with attendance and keeping up my grades. I’ve recently lost two jobs in a row because of my attendance because once again my chronic illness and I just worry what I’m going to do for the rest of my life. I’m not going to college because I know I can’t handle it and I don’t want to go back to work because clearly I can’t hold a job and my doctor himself told me it might be best to not work to keep my stress down. I just feel so lazy but when I force myself to try and be productive and do things when my body doesn’t let me I end up getting sicker for longer and it’s really frustrating. I’ve already mentioned how my boyfriend told me how in our future he’s not going to let me lay around all day because he wants me to get up and do things which i understand I don’t want to put the burden on him for everything but it’s like my BODY WONT LET ME. my dad is fully disabled and he lays around all day and watches TV and sleeps all day and people don’t bother him but when I mention getting disability I’m just “lazy” and “fully capable of working but just don’t want to” I just really don’t know.

Part 4: losing my job recently and wanting to get disability

So in November I started a receptionist job. I specifically applied for this job because I figured it would be low stress and I would be able to sit and basically have it accommodate with my illnesses. Well I was wrong because that job had me stressed out every. Single. Day whether it was rude clients, my rude and condescending co workers, having to wake up at 4-6am depending on the shift, constantly being called in on my days off, having to get up and run around the building looking for stuff for a client or one of the doctors, etc. every day I would come home pissed off and complain to my boyfriend and the almost three months I worked there I had probably around four panic attacks at work because of the situations and stress I was put under. Recently I’ve been having neurological problems on top of gastroparesis flare ups and before my 90 days I missed three weeks of work whether it was because I was sick and couldn’t make it to work or had a doctors appointment, in the hospital etc. Nobody ever wanted to switch shifts with me so I always just had to miss work and I brought a doctors note for every day I missed. Right before my 90 days ended they let me go which is kind of a relief but now I have no money coming in and bills to pay. I’m thinking about applying for disability but I’m waiting to get my possible multiple sclerosis diagnosed before I start going through the process. My last job was working as a technician in an animal hospital and it was wayyy too stressful and active for me a dog pulled me so hard my wrist and back were fucked up and I had to miss work for four days and go to the doctors and chiropractors. I had to lift up dogs that weighed up to 50/60 pounds and that also fucked up my back on two occasions because I’m really skinny and when I try to lift with my legs they shake and give out. I would be bruised up from restraining dogs and they barely bump into me and I get a painful red and purple bruise. I’m too “fragile” to handle the naughty big dogs that would pull me to hard and then once again rude co workers and rude clients that gave me a ton of anxiety and stress. My doctor told me himself I should leave that job and that’s when I went for the receptionist job and it was just as bad. I mostly want to get disability because I feel like I’m not reliable to keep a job with doctors appointments and flare ups that I have and I feel like at the reception job I couldn’t handle the easiest of shit my memory is so terrible I got in trouble for fucking up a handful of situations and was actually called “dumb” by a co worker. Not to mention the stress of having to somewhat argue with my boss that I can’t come to work on so many days because I’m going to the doctors or calling out because I feel so sick and having to tell them I’m going to the doctor tomorrow so I can’t come in or I’m in the emergency room and been here for nine hours and it’s already 2am and still here I won’t be able to come to work tomorrow etc. So yeah idk we will see but there’s no way I’m putting myself back in that situation. Now that I get to lay down and relax and a majority of stress is cut from my life I’ve been feeling better but still not by any means I’m completely fine I’m still sick everyday but the stress was making me way sicker.