#well okay i guess chronic migraines makes me chronically ill | Explore Tumblr Posts and Blogs

siverfanweedo · 2 years

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i am gonna take a second here and talk about fibromyalgia.

The first time i ever heard about it was in the show "haters back off" it was played as a joke. Note the show was so bad i legit felt like my brain had left my body but.... i will never forget it. The jokes how it was talked about how they said the word wrong and how that is how i spell it fibro my alge uh. The first time this illness was presented to me it was played as a joke someone who clearly it fine and just wanted special attention the only person who took it seriously was someone who thought disabilities where sexy... this was... probably not even a year before my work injury.

Fibromyaliga can be triggered in many ways. Trauma being an actual bit of it. The thing is, there is no damage for firbo despite the pain in all my joints there isn't damage ( note it seems mussel pain is more common but i have joint pain ). I got hurt and work and here i am and i have no doubts childhood trauma never helped anything either. Fibro also isn't just like pain. It's chronic fatigue i feel i don't need to explain that to much i reblogged the fatigue scale not to long ago.

i also have, ibs, chronic headaches/migraines, brain fog.

I have learned as well many things are corbid with firbo. ADHD, Autism, PTSD, POTS, non 24-7 sleep wake disords, the list probably goes on.

My thought here is. Fibromyaglia is weird and JKR making light of ir probably treating it as a fake 'wanting attetion' kinda thing is disgusting. It makes me feel hurt and unsafe in a world that already feels like it judges me and expects me to be abled cuz i look it.

All that stuff her 'villain' has i pretty much have it. It changed my life so much the whole thing was really traumatic. I was lucky i got diagnosed but it took 3 years. I lost all my dreams in those 3 years i had to restart my life i lost so much. I don't like to put suffering at the center of my disabled experience. I have learned to find new joy in life i have leard to work through the pain and tiredness and how to just live.

I don't want what i have been through to be mocked i don't want it to be painted as suffering. Cuz like once you paint a disabled life as suffering it quickly leads abled people to think eugenics is okay.

this like really got out of hand i guess but my main take away here is. DO NOT like JKR add to the dialogue of fibro or CFS/ME or allodynia as fake attention seeing BS. Learn about all these things on your own and fucking educate people if you can. DO NOT talk over disabled people while doing so but please protect us. JKR target has never soly been trans women. She has been an ablest fuck for years as she targeted autstic trans men years before her 2020 tweet, and oh guess what lots of austic trans men have fibromyalgia ain't that neat.

BUT YEAH!. uh fuck JKR my illness are real.

#jkr #ramble #if you are gonna suport jkr on this post i will block you

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hedjblogr · 10 months

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so i gotta make a full ass post about my last reblog because i would be doing the situation a disservice if i posted it only in the tags.

puts my grubby little pizza hands together and takes a deep breath

so.

around 2019-2020, so pre-pandemic, i was working for a small startup business. this was through a scheme that my local council was paying for, to get people into employment and to help local small businesses. great stuff on paper! fantastic stuff even!

this business was uh. well. the guy running it was maybe not the best personality match for me when it comes to a boss, but that's something better demonstrated than plainly stated. i don't wanna say he was a bad guy because that'd be unfair, but i was not the only person who struggled with dealing with him. i won't go too much into his personality either because this isn't about making a smear piece, this is about processing my struggles with illness in the workplace.

so, yeah. i'm a chronic migraine sufferer. it varies from headache and dizziness severity to "i'm having spots in my vision, i feel like throwing up and i literally can't do anything but sit with my head in my hands and my eyes closed tight and make pathetic noises". i'm still not entirely sure what my triggers are for it, but right now i'm thinking it's linked to drastic weather changes, hydration, stress and poor sleep.

i also have moderate to severe depression and anxiety. this ebbs and flows, it always impacts me at a certain baseline but a lot of the time it's background noise. my anxiety tends to flare up more than my depression, admittedly, but hoo boy do they both hit me bad when they hit me.

these were going unmedicated at the time for various reasons.

so, by the very nature of a startup business with less than 10 employees, a lot of us had to do a lot of different kinds of work. that's fine, i'm multiskilled, i don't mind doing a variety of things. but i was definitely more of dog's body than whatever the hell i originally signed up to be, which was more of an administerial/clerical position. aight, fine, i've worked in retail, i can do sales. i'm a computer nerd, i can do social media marketing and graphics. you want me to train people? uhhh sure i guess. and learn UX? fine okay. wait you want me to learn to code as well??? i'm not getting paid enough for this.

so it was a very stressful job. very anxiety-inducing job too. i was told both that i had a lot of responsibility and i was NEEDED, and that the company would simply keep going without me and it didn't matter if i quit or was let go.

oh! fun fact by the way. remember i mentioned my local council was paying for me to be on this scheme? they were paying him. he was getting my work for free, technically. granted, i was getting paid a wage, but he was not the one paying it. yeah. it's great on paper until you consider the way things went in practice.

on one instance i recall that i had my entire evening monopolised, because unbeknownst to me i had apparently agreed to run a live training with someone who was using our product and using it during the evening hours. and i was apparently required to field phone calls from them all evening. i didn't sign up for this, i didn't get paid for these extra hours.

on another instance, i recall we got locked in the building we worked in because we stayed too long (as it was not a privately owned building, we were renting space in a public college), and i was literally in tears with panic about getting out. graciously i was given the next day off work to decompress, but i should never have been put in that situation to begin with. this was due to a bad call on my boss' part.

i'm getting a little distracted here, my apologies, but this thing happens when i start digging up old grievances and trauma that i remember tangential things and it just kind of goes from there.

but yeah. i actually discovered through this job that i suffered anxiety attacks and what they felt like, and that my anxiety was a liability, and i began to suspect through this job as well that my frequent headaches that often led to me feeling like throwing up were not in fact just regular ass headaches.

i didn't feel like i could get sick notes in this situation. i felt like my employer would turn them down or simply fire me.

oh, but you know the time i HAVE used sick notes?

universal credit. good ol' department for work and pensions. rule britannia and all that.

fuck off with that shit actually, they refused my last sick note even though it was ongoing because it listed my depression and anxiety, and they decided that i was actually entirely fine even though they told me i could work on reduced hours to still be eligible for benefits because of my health conditions, and the job search has - to no one's surprise - been making my health conditions WORSE.

(edit: i should clarify, they DID accept sick notes for a time, but eventually i needed to undergo a work capability assessment, and this is when they decided that i still had capacity for work - which i do agree with, there are things i can do! - and then proceeded to ignore the part about it being for reduced hours.)

guess who's been crying themselves to sleep more nights than not, and struggling to sleep, and having erratic schedule, due to scraping to even get an interview only to be NOT EVEN TOLD that i didn't get the job! and that's if i even get a reply back from the first application!

yeah. there's a lot of shit wrong with healthcare and a lot of shit wrong with employment right now. and as it turns out there's a lot of shit wrong with me.

i'm probably gonna delete this post after a while because i always feel bad dumping shit like this on main, especially when it feels like it's old news and i just haven't processed it because i know i'll never get closure. but sometimes i just have to let myself write, and maybe if i post it someone else will come to a realisation and it'll help them. i dunno.

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justseveralowls · 4 years

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Some of the good parts of mental health recovery:

This post is not to brag, be preachy or overly positive and I really hope it doesn’t come off that way. It is just a list of some of the good things I have come across so far. I hope it will inspire and serve as a reminder to me and all who need it that even on bad days choosing recovery is worth it. I hope these are helpful.

There will be good days, and they will be more frequent than they had been before.

There will still be struggles of course, but it will also get easier to recognize and not dismiss small victories, nice feelings, and pleasant events.

As time goes on you’ll have more energy, the energy you didn’t have before, the energy that you can use to live.

For me, this meant I started writing again. It had been probably well over two years since I had sat all day and wrote, completely enthralled. It didn’t happen all at once but the difference was undeniable. You start remembering and enjoying your hobbies and passions again.

You start to feel clearer.

Personally, I had a point in my journey that I couldn’t read anything too long because of my focus and brain fog. I will never forget the day I picked up a new book and dove right in after what felt like forever.

Laughing again.

I know this sounds weird but I remember one of the things that I realized about 6 weeks into treatment was that I laughed easier.

Music begins to sound better again, and not just the sad or angry playlists.

I remember driving and hearing a song I had loved at a good time in my life and thinking “why don’t I listen to this kind of thing anymore. I liked how it sounded and how it made me feel and since then I have majorly expanded my Spotify. Now I will admit I still have my angst playlists and still listen to them, but that’s not all I can stand anymore.

Eventually, thinking about the future doesn’t fill you with dread.

I won’t lie it started as indifference then morbid curiosity with me, but now I am finding that I’m starting to want to start my own life.

You learn what’s really important to you.

This process can be exhausting, annoying and sorta awful at times. But in even the worst moment you’ll learn what is important to you, and what motivates you. For me, it was wanting to make the world better, to tell me stories and to make a family that I know I can trust and who loves me (turns out it may be a partner and a ton of cats). Finding these is empowering and liberating.

Empathy and an amazing sense of understanding.

When you go through this process it is one of the hardest things you can do, but you come out of it knowing so much more. It allows you to understand yourself, others and the world better. This means you can inspire yourself and others, tell your stories, and spread awareness.

You get to know yourself.

Okay so at the start and honestly through a lot of my life that sentence would have filled me with dread. But let me explain. Something that surprised me was that this process exposed my motivations, fears, ambitions and the traits that truly make me who I am as a human being. Now not all of it was pretty, and I won’t say all I learned was pleasant. But I also got to know the good. I uncovered that I was kind, funny and loyal and that those traits were as much a part of me as anything else.

LEARNING TO SELF SOOTHE!

Like holy crap, this was actually something I had never been able to do. In general, I would sit in distress until I either hit “I don’t care anymore” or was too exhausted to think. But after lots of practice, and some rough days and nights I actually managed to calm myself down without self-destruction or harmful actions. It was terrifying but one of the most amazing things ever.

You eventually see physical improvements.

After months or years on “running on empty” I had grown kind of accustomed to permanent dark circles, pale grey hued skin, shedding hair and constant exhaustion (now a couple of those were because of some chronic illnesses going mostly untreated) but I was pretty surprised that I started to feel even a little better. (I’m not saying treat your anxiety and you’ll never feel bad, be in pain or get acne again. But for me removing stress made my bad pain days and ofter debilitating symptoms seem a lot more manageable because I recognized things more.

A higher level of emotional fluency.

I have always struggled with identifying and coping with my emotions, but with my overall mental health on the upswing, I have become better at labeling and accepting my feelings. This isn’t foolproof yet, of course, but it certainly has made it a lot better.

You start to be more comfortable with your needs

I call this “troubleshooting”. I get a feeling ™ then go through the list until I figure it out or improve it. I still struggle to rest when needed but I am much better than the time in my life when I went to class/work with one of the worst migraines of my life. Meeting at least physical needs becomes like watering a plant, necessary even if it’s not all that enjoyable.

Things seem less daunting, whether it be school, laundry, or taking a shower.

Now once again I’m excluding my bad pain/flare days. But on days when spoons are sufficient or at least not critically low, I find that maintaining my room, hygiene and meal plan (anorexia recovery necessity) seem much more doable. I am also I lot less hard on myself on rough days when I can’t do the “normal” routine/tasks.

I know as well as anyone how much this process sucks sometimes. I still have plenty of struggles and bad days, but I thought it was really important for me, and others going through their own journeys. The point of this post is to remind everyone going through this process that there are benefits even when you are a while from finished (like I am). This is still worth it, even as hard as it is. There is so much more to life than struggle, even if you haven’t experienced that yet. I didn’t think I would ever get this far alive, let alone preparing to start my own life. What I guess I am trying to say is, that as much as it is hard to believe recovery is possible and better than it seems, for everyone, even if you’ve spent your life so far convinced it wasn’t. Keep fighting, this is possible and you are not alone.

Feel free to reblog and add your own positives!

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not-poignant · 3 years

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Hey Pia hope you’re doing well

I was wondering, is the thing where Arden picks up a bunch of random hobbies and commitments a part of his ADHD or does it have like a name?

I’m a highschool student and I get told by all my friends and teachers that I have overcommitment issues and part of it’s just for uni and whatever ofc but it’s also that I want to do ALL THESE THINGS

Like I’m in 4 different science competition teams, the school debating team, school orchestra, scholarship classes, editor of my school newsletter, I lead the school amnesty and unicef clubs plus the IB program and being in the national maths Olympiad team lol and I don’t want to let any of these go but it’s so stressful and I’m so tired and ppl say I have to say no to stuff which is also stressful!

Also, doing more is always portrayed as such a great thing and I feel rlly guilty letting stuff go? So I’m just reaching out because you portrayed it in such a refreshing way and I was really curious!

Firstly, massive respect for your ability to fit this ask into the Tumblr ask limits. Seriously :D

Okay secondly, Arden’s habit of picking up a bunch of random hobbies / commitments is part of his ADHD. People with ADHD have this to different degrees, and my beta in particular relates really hard to this habit of Arden’s.

But actually, one of the reasons I put this in is because this is a very bad habit of mine - which is overcommitting, and overworking. And not wanting to let anything go.

People teach you a lot of skills in your life on how to pick things up, but almost no one teaches you what to do when you have many hobbies you love, and they’re hurting you because you’re working too hard and don’t have time for your loved ones (or to even really have loved ones) as an example. And it absolutely is a crucial skill to learn for people who are dealing with this, though capitalists don’t want you to learn it.

In the media what I see is most folks having no hobbies and someone being ‘oh you have to learn some.’ I liked Arden as a contrast to that ‘no, that’s too many things, put some back.’ Where Arden’s ADHD manifests - though it’s much more controlled than it used to be - is that he desires to spend a lot of money on the thing as soon as he gets into it (because he only wants the best of the best - which wasn’t great when he wasn’t earning much money), and that he starts really hooking into it in an obsessive kind of way. Spending a night making bows for your dog is one thing. Then wanting to spend $500 and start an Etsy store small business is like...from one day of work, not great.

A lot of Arden’s life has involved choosing to let go of things he’s loved doing, for his own sanity. This is something I’ve had to do as well and I fucking hate it, and these are the techniques I’ve developed for myself (and my still frankly overcommitted ass, who has people saying ‘when are you going to do LESS’ all the time to my face).

* Remind yourself that dropping some things now doesn’t mean you’re dropping them forever. It doesn’t have to be permanent. Sometimes it’s good to put a time limit on something. ‘I’m going to drop this for four weeks / four months and put a note/reminder in my phone about it right now.’ Chances are high you are not going to be as interested in that thing in four weeks/four months. (Chances are sadly also high you may have replaced it with something else). Like, there will be science groups you can join for the rest of your life. And debate groups. And newsletters.

(That being said, none of those things count towards our grades in Australia? So I don’t know how much these things are counting towards your grades in general and I’m not going to like, touch that side of things - however overcommitment is a super fast way to do a lot of things not that well, or to suddenly get so sick you can’t do any of the things and then feel terrible while you’re sick, more on that later!).

* Time caps on certain hobbies and activities and commitments. This is to actually shoot my habit of hyperfocusing in the foot. I don’t have time to play piano for four hours, but I’m allowed to play it for ten minutes a day (sometimes more but not often). And ten minutes a day adds up over time. I literally sit down and put the timer on my phone. If say there’s something that meets up twice a week but some people only go once, be one of those people!

* Rate the things based on how they contribute to your a) career and b) quality of life and c) happiness. Anything that rates lower on the list compared to the others (that isn’t like, literal money-making work or literal classes) needs to be dropped.

* Dropping things is just actually one of the hardest parts and there’s no real trick to making this easier. I just remind myself: ‘Just because I can do this thing, and do this thing well, doesn’t mean it’s good or healthy for me to do this thing. I need to spend time with people I care about, and I need rest, and those things matter more even if they feel less like ‘accomplishments.’ I want to care for myself through my hobbies, not punish myself.’ That goes some way in keeping perspective, but look, ngl, it sucks to drop commitments if you have an accomplishment/achievement/job satisfaction addiction. It just sucks.

* Accept that you are going to feel guilty, and that guilt is just an emotion, and it doesn’t mean you’ve done something bad. Look sometimes guilt gets it wrong! Sometimes you feel crushingly guilty just for breaking a bad habit, it’s not useful, you just have to kind of be like ‘huh I’m feeling a lot of guilt for trying to look after myself, that’s really interesting, I guess I can understand that but I’m also going to try and praise myself for doing a great job. Just because this isn’t an obvious kind of achievement, I know I achieved something really big and difficult today.’

* Oh yeah, use achievement and ‘job’ type language for doing things that involve successfully taking care of yourself and your energy levels. Just...sometimes you have to ‘if you can’t beat them join them’ - chances are you’ve never been as kind to yourself or proud of yourself for resting and taking it easy and seeing friends, than you are for taking on too many commitments. So...challenge yourself to be kind to yourself and proud of yourself for resting and taking it easy and seeing friends and committing to less. Trust me, you are never going to forget how to overcommit, and you are never going to become lazy or lax because you dropped a few of the (billion) things that you’re committed to. You can afford to praise yourself for this! And generously!

* Seriously, seriously consider seeing doctors or psychologists about this. Despite a TON of PTSD, I actually see my therapist most for working too hard and overcommitting. We spend a lot of time talking about why I might not be the worst person in the world for taking a break. Take it seriously. Your list alone made me feel like I was about to have a panic attack, lmao, your friends and teachers are right, you have overcomittment issues.

* Workaholicism and work addiction is real. There is a growing amount of information about how to deal with it and it’s worth googling.

***

Er anyway that’s what I do. It doesn’t always work. I have a lot of rules in place and I abandon half of them about halfway through the year and then s u f f e r. And have been doing that for over 25 years and I’m going to say bluntly now - it’s why I’m as sick as I am, and some of that sickness is irreversible. If nothing else, if you want to stay as active as you are now, I do not recommend that anyone push themselves so hard that they can no longer even do things that they enjoy on a regular basis, because they’re too physically debilitated to manage it, because they pushed their bodies too hard during the university years and just after. Because that is 100% why I became so sick in the first place.

And even extremely healthy people who have no history of chronic illness often develop something, in conjunction with years and years of working too hard or overcommitting. I’ve seen it happen to far too many of my friends, and you might feel like ‘just another six months’ or ‘just another three years’ but you’d be surprised how quickly you can go from ‘I’m doing it I’m doing it’ to ‘I keep getting migraines all the time doctor how do I fix this so I can go back to working as hard as I was before’ and your doctor being like ‘...yeah this isn’t curable. I’m going to give you some meds, that all come with horrible side effects, and you simply can’t do what you were doing before.’ Game over.

Trust me, that shit catches up with your body always. It might not be now, and I hope frankly it’s never, but overcommitment and workaholicism are the two fastest ways I know to chronic illness and once you get there, you can’t work your way out of it again.

Though god knows I have tried.

#asks and answers #personal #workaholicism #work addiction #like if you start stress grinding your teeth #for years #because you can't sleep well #because you're working too hard #trust me that will be over ten years of absolute misery and agony #as you crack your own teeth #because once you start stress grinding #you never stop #oh one final thing to keep in mind #you have been brainwashed by capitalist rhetoric #to believe that working is the greatest virtue out there #if you don't want to be a capitalist stooge for big business #unpacking overcommitment psychologically #even outside of impulse issues #can be pretty meaningful #but expect to need to do it more than once #because you will get that brainwashing all around you #for the rest of your life #(it's like body shaming sadly it's just everywhere)#some of my friends are going to read this advice and be like #WHY AREN'T YOU DOING IT PIA #tons of sympathy anon it's hard as fuck #seriously anon if you don't want to spend your life with a fucked up body FOREVER #learn some crucial skills now #administrator Gwyn wants this in the queue #Anonymous

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ninjanonymous · 4 years

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I’m pissed off, and sad, and scared, and I have a lot to say right now. This all needs to be said, for my own sake if not for anyone else’s.

Very recently, the Supreme Court ruled 7-2 that employers under the Affordable Care Act are now allowed to roll back access to birth control for their employees, as long as their religion disagrees with it. This ruling was made in the name of religious tyranny, and NOT that of religious freedom. Christian-run businesses can now force their beliefs onto their employees by actively denying them the healthcare that they very much need.

Can you imagine the outrage there would be if SCOTUS decided that it was suddenly okay for a Muslim-run business to break FLSA standards during Ramadan? After all, if a Christian-run business shouldn’t be forced to pay for all ACA-protected aspects of an employee’s healthcare, why should a Muslim-run business have to sacrifice profits when eating lunch during Ramadan is against their religion?

“Oh, but there are federal protections to keep something like that from happening.” Are there? Are there really? The ACA gave employees FEDERALLY PROTECTED access to birth control through their employers, because an employer’s religious beliefs shouldn’t be used to control the freedoms or hurt the wellbeing of others. Now look where we are.

This court ruling essentially dictates that religion can make you exempt from federally-mandated rules for the sake of profit. It puts the employer’s beliefs above the beliefs and wellbeing of their employees. It puts any company’s self-proclaimed God over the law, and allows them to forgo worker protections because, according to them, it’s what Jesus would want.

And where do we draw the line? Should a company that’s run by a Jehovah’s Witness be allowed to deny coverage for a needed blood transfusion? Can a religious company claim that any illness is a righteous punishment from God, and the use of modern medicine to treat it would be sinful? What would that mean for something as devastatingly expensive as cancer treatment? What if the CEO doesn’t agree with vaccines? And really, why even stop at access to healthcare when there are any number of ways that a company could encroach on their worker’s rights in the name of God?

Too many people in this country are entirely dependent on their employers for their health insurance. Healthcare costs in America are the highest in the western world by far, and life-saving treatment is often prohibitively expensive without it. This SCOTUS decision may ultimately deny many Americans their constitutional right to life.

Employers pay private insurance companies to provide care for their employees. This is a blanket expense. They don’t get an itemized bill for the healthcare that they’re covering. They’re paying for general healthcare coverage to be provided by insurance company, and that’s it. The employers are not the insurance companies themselves. They are not the ones processing the claims and choosing which to deny and which to cover. Your medical record is private, protected information. Your employer does not have access to that information under HIPAA. If your employer isn’t allowed in the room with you during your doctor’s appointment, they absolutely shouldn’t be allowed to pick and choose what care you can and can’t receive.

These companies are literally just saying, “see that person right there? I don’t like that they’re on birth control, because I’M a Christian, and that’s against MY beliefs, so now THEY can’t have it.” A Christian forcing their beliefs onto someone else isn’t religious freedom, just like a Muslim forcing their beliefs onto a Christian wouldn’t be. This is religious tyranny the and Christian-backed persecution of women.

And for this specific ruling, it really is that arbitrary. This ruling is a poorly-disguised move to further strip away the rights of women in the name of Abrahamic theocracy. The idea that this decision would save money for these employers is completely asinine, considering good reproductive healthcare and access to birth control reduces long-term costs overall (I will be adding the stats and sources to back this up in a later post).

And here’s an important reminder for you all: reproductive healthcare is still basic healthcare. Taking care of one’s needs regarding their reproductive system benefits their overall health. And even if you disagree with me there, “birth control” is a pretty damn big misnomer. While it is commonly used to prevent unwanted pregnancies, there are a myriad of other reasons that a woman might need it for.

Birth control can control hormonal acne. My own mother was put on it for this reason back when she was a teenager.

It can be used to help regulate one’s mood. A dear friend of mine is on it for this reason. She suffers from severe depression, occasionally to the point of suicidal ideation. I am fucking terrified about what this court decision could mean for her.

It reduces one’s chances of getting uterine cancer. I have a family history of uterine cancer, and it can be hard to detect. They only found it in my grandmother by chance when they were performing an unrelated surgery.

It reduces your chances of forming ovarian cysts. Women with PCOS often suffer from these, and they can be quite painful. My mother had to have a football-sized ovarian cyst removed from her abdomen, and histology found that it contained pre-cancerous cells.

It can relieve symptoms of PMS and PMDD. Again, this is a form of hormonal mood regulation, as well as a means of controlling many of the unfortunate physical side effects of the menstrual cycle. PMS and PMDD are often topics of ridicule, but their symptoms can have a serious negative impact on one’s day-to-day life. I’ll add more information on this later, since there’s a lot to cover.

It can help regulate one’s menstrual cycle. For reasons I shouldn’t have to explain, knowing when blood and viscera is going to start pouring out of your crotch really helps with being prepared to deal with it. It also helps to avoid really embarrassing situations in public, or the need to clean bloodstains out of clothes and furniture. Irregular periods are a gruesome guessing game. I’ve been there. I don’t want to go back.

It can make your periods less painful. Periods happen when, once a month, the uterus sheds its inner lining. As in, the person having their period is bleeding internally, because one of their organs is shredding and expelling parts of itself from the inside. That shit hurts. Many women have reported vomiting or passing out from period pain. For me, the average period cramp can be compared to really bad gas or diarrhea pain. You know, the kind that has you breaking out into cold sweats on the toilet while you silently beg for mercy to any god that might be listening. Fun, right? I’d recon my pain level is about the average, too.

It can be used to manage menstrual migraines. Did you know some women get migraines in conjunction with their periods? Migraines are debilitating. Imagine having them chronically, getting them frequently around the same time every month, then being denied affordable access to the one medicine that was keeping it in check because your asshole boss says that Jesus wants you to suffer. Bonus points if you get fired because the migraines had a negative impact on your ability to work.

It can reduce your risk of anemia. Some women get really heavy periods. Like, crazy heavy, to the point where they bleed so much that it’s unhealthy. Technically speaking, I fall into this camp. I’d hemorrhage to the point of needing a transfusion if I went long enough without birth control. Gee, I sure hope the insurance-throttling company that I work for isn’t run by a Jehovah’s Witness.

Birth control is the only non-invasive way to control uterine fibroids, which often go hand-in-hand with endometriosis. These are non-cancerous growths within or around the uterus can cause uncontrolled bleeding, and may be quite painful in and of themselves. A ridiculously high number of women have this, myself included. Most women that have them have no or very few symptoms. I was not so lucky.

And that’s just a few of birth control’s many uses. And actually, let me talk about my fibroids some more for a second, just so you all have a better idea of what it means to live with this shit. TMI time. I take birth control. I’ve been taking it regularly for about five years now. I’ve never had sex before, and I don’t plan on it any time soon. This is the one and only reason I’m on the pill.

Five years ago, during my freshman year of college, I started bleeding out of the blue. Really, really badly. This “spotting” was sudden, and heavy, and unrelenting. I’d completely bleed through a super tampon in less than two hours, when one of those would last a good eight hours on my heaviest day during a normal period. I had to sleep with towels on the bed, and set an alarm to wake up early so I could take deal with the shed blood before it got too bad, and to give myself extra time for cleanup before classes. After going from horizontal to vertical for the first time in several hours, getting to the bathroom was a race against time and gravity.

I lived like this for a full month. Tampons and pads, for those of you that have had the privilege of never needing to buy them, can get really pricey. Doubly so for a broke college student, triply so when they need to be extra-large packs containing extra-large products, and quadruple-y so when that broke college student is still managing to bleed through those products at an absurd rate. And, it hurt. The pain was worse than usual; the camps were sharper, more persistent, and sometimes it felt like someone was jabbing a big needle into my abdomen and twisting it around. I was taking OTC painkillers constantly, and they barely made a dent in the pain.

The bleeding started just over a week after my last period had ended, so it was way too early for it to be my next cycle. I figured that maybe my cycle was syncing up to my roommate, or some other chick on my floor had some weird hormonal imbalance, and the outside interference from other people’s hormones was screwing with me enough to make my own body act weird. I figured I’d just have to wait out this one bad period, and everything would settle back down to normal. But, two weeks passed and absolutely nothing changed. The bleeding wasn’t slowing down, and I started to get worried that it wasn’t just an abnormal period. I waited a couple more days, then booked an appointment at the health center. It was more than a week until they could see me.

The consensus was fibroids. They couldn’t give me an official diagnosis without an ultrasound, but all signs pointed to that one conclusion. They said that the only way to make the bleeding stop was by taking birth control. I wasn’t happy about it, since my mom had me convinced that birth control would actually increase my risk of cancer (not true, as I later found out), but I agreed anyway. The nightmare was over a few days later.

So, off topic but still related, I had surgery on my foot a couple months ago. It had to be immobilized for a while, and I was put on blood thinners to prevent any clots from forming while I recovered. Birth control pills can actually increase the risk of blood clots, so I made the choice to hold off on taking those for a while, just as an added precaution. Sure enough, only five days later, the bleeding and the pain was back. Again, it had been only a week since my last period.

I still need to be on birth control. It is a medical necessity for me. My fibroids are still around, and I’ll still spot and cramp up if I miss a pill. I’ve recently been told by my doctor that a permanent fix, and my only other option for treatment, is a hysterectomy. I am 22 years old. Most surgeons would never dream about performing that procedure on me, even if it didn’t already come with its own health risks.

And hell, even if it is used just to prevent pregnancies, what gives someone else the right to deny a woman her bodily autonomy? Human beings are sexual creatures. They’re going to fuck, regardless of whatever laws or religious doctrines are involved. We are quite literally built to have sex, and it’s entirely healthy to do so. There are plenty of peer-reviewed studies that go into detail on the matter; just hop onto Google Scholar and see for yourself. And, maybe, preventing pregnancy is a need in and of itself. What if a woman has a condition that would make pregnancy extremely high-risk? Is she not justified in taking birth control to protect herself from grievous injury? If she’s married to a man, does that married couple not have a right to sleep together without fear of one of them literally dying for it? Even by Christian standards, it doesn’t seem right.

This decision that the Supreme Court has made is utterly shameful, and countless law-abiding American citizens will now be denied access to needed care that they otherwise couldn’t afford without insurance coverage. This is truly a loss for America and her people, and one that will cause suffering for decades to come.

#long post #text #my thoughts #scotus #politics #feminism #fuck republicans #fuck conservatives #and fuck the evangelical right #religion #christianity #america #2020 #sorry if i’m not the best writer #fuck #theocracy #angry #fibroids #birth control

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cripple-cryptid · 4 years

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Getting To Know Me (Again)

It’s been a long time since I’ve really made a serious post that was well thought out and also like, a full update. It’s been a long time since I’ve even really just made a literal “Life Update” as well. So I guess this is a good time. I think it’s important because this blog has changed quite a bit in the past few years, and I think that I need to just make some things clear. This is probably going to get long, and heavy, but I think this is important, and I’m hoping that maybe I can help people in the future after I get this taken care of. Fair Warning: I am literally the worst at organizing this sort of thing, but I would really appreciate it if you read it the whole way through because it would mean a whole lot to me.

Hello. My name is Sava. I’m 22 years old. I’m a transmasculine Agender individual, and my preferred pronouns are They/He. Truthfully, I don’t mind other pronouns as long as they are not She/Her. I am a trans person, and I experience dysphoria. I’m planning on getting top surgery and HRT at some point in my life. I don’t know when, but I hope that it will be soon. I’m also Asexual, and Aromantic. I’m sex repulsed, and romantically indifferent. I am polyaffectionate (thanks to @aromanticpolyamory for the flag on this one, and coining the term as far as I’m aware?) and I have two partners. I love them both very much, with all my heart, even when I am an AroAce. So in summary, I’m a polyaffectionate Triple A (thank you @aro-ace-agender-space for the beautiful Triple A Pride Flag once again I literally love it to death)

I am also disabled. Mentally, and physically. I went most of my life undiagnosed, however I have been tested repeatedly for various things since I was a small child. I was always disregarded, and never got a proper diagnosis for my mental illnesses until I was 17. My physical ailments were ignored and went unnoticed until I was an adult, and I still am working towards a true understanding of what is going on. I am an amalgamation of many things, both mentally and physically, and it is a very long and frustrating process. Everything from my Depression, PTSD, and various other mental illnesses mix with my hEDS, Fibromyalgia, Chronic Migraines, and Insomnia. New symptoms are cropping up, as well as potential new problems. There are many things that make sense to me now that I look back on how I grew up. My old injuries make sense. My weird allergies make sense. Some of the things that I seemed to have inherited from my parents now make sense. But now that I’m older, I’m starting to learn. I have tools, braces, and mobility aids that make life easier. I finally decided that meds are a smart idea, so doing the responsible thing is starting to pay off. I hope.

I’m...not the same person I was when I first joined this site 10 years ago. I was innocent, misguided, selfish, manipulative, lazy, and bigoted. I did nothing to change my views, and didn’t really allow anyone to educate me on things that I did not realize were actually important. I was ableist, somehow sexist and misogynistic, and downright stupid. Despite all this, I thought I was right in all the wrong ways, and never tried to properly justify any of my points. And this is where everything changes.

I am going to put a warning here now. These are my beliefs, and If I receive any hate in my messages or in my askbox because of what I am about to say, I’m not even going to answer them. I am entitled to my opinion, and you are to yours. If I am threatened, I will report the threats. And that is that.

You are allowed to self Dx. I’m not going to say that it’s better than a professional diagnosis 100% of the time, but some people are not capable of getting a professional Dx at that point in their lives. Sometimes, it’s the start of the journey towards finding answers, and that is why I support it. You do not need dysphoria to be trans. Now mind you, I am referring to the umbrella term here. I feel that sometimes, you don’t agree with the identity that you were assigned with at birth, and that it can cause a serious disconnect. This can apply to many different identities, whether that is genderfluidity, gender neutrality, or another identity, it is not for me to say. I am not in charge of your body, you mind, and how your autonomy works. I know that people will argue with me on this, but I think the most important thing is that we all need to support each other in the community, regardless of what labels we use. It’s a journey of self discovery, and sometimes, labels change. It’s okay. I love you no matter what. Aspec People belong in the LGBT+ community. I’m not going to expand on this because I don’t have to. There is plenty of history that you can look up for yourself on the internet, and I don’t have to justify myself. Your spiritual beliefs (or lack thereof) are yours to practice, and I’m not going to shame you for them. I have my own beliefs, and I’m not going to shove them down your throat. I’m not going to tell you that you’re going to hell. I’m not going to try to “convert” you. I’m going to respect you to the best of my ability, and if I need clarification on anything, I will try my best to make sure that I do not overstep any boundaries. I will not shame you for your body, no matter how you look or how it works. It is not my place to tell you how to look, how to dress, or how to take care of yourself. I love you and I hope that you can love yourself, too. Abled people do not have a say in how to treat disabled bodies. You do not know our pain and you have not gone through the same journies that we have. This goes the same for neurotypical people and speaking for neurodivergent people. We know ourselves better than you ever could. POC voices are the only voices that matter on topics that relate to their struggles. White voices hold no weight because we know nothing about what we are saying. BLACK LIVES MATTER. FOREVER.

There are many topics that I have not addressed here, but I cannot think of many more at this current moment. I’m considering making some sort of masterpost, or fixing up my FAQ later on to better address all these things later on. But I have more that I need to and want to say in this post, and I need to move on.

It’s been a long time, and things change. I have changed. This blog has changed many times. I will probably be revamping the appearance of the blog soon as well. so I decided that this long post is a good time to say the things that I need to say.

I want to help people. I might be a bit of a grump, and sometimes, I’m a bit of a wild card when it comes to things that I’ve posted in the past (read as: I’ve posted some really dark shit because I’ve been in some really dark places in the past). I don’t know everything, but I still want to be here to help others. I want to be here for people that are struggling with pain, and need some help. I want to be here for people that are hurting and don’t know how to start the process of healing. I want to be here for people that maybe don’t have the capability to get the help that they need, because they will never have the chance. I want to be the friend that I never had when I was younger. If I can do that, I’ll be happy. This might just be wishful thinking, but I really do want to be a bigger voice in the disabled community, in the mental health community, and in the LGBT+ community. I want to be part of something bigger.

So once again I will say: I’m Sava. I’m 22. I’m a triple A. I’m polyaffectionate. I’m disabled. And I want to help others and make a difference.

#spoonie #disabled #chronic illness #chronic pain #neurodivergent #self care #l!fe #me #long post #LGBT+#aroace #asexual #aromantic #agender #polyaffectionate #trans #cane user #wheelchair user

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exeggcute · 4 years

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as a chronically ill person with other mysterious health conditions, do you ever get a sense of fatalism? what do you do during these times? if you don’t feel that way, how do you feel about being sick forever? (I am also sick forever)

absolutely, my friend… when I’m not going back and forth on the “am I really sick or just faking all these things for attention” issue (a worry usually alleviated either by some form of unrelenting pain rearing its ugly head or by one of my doctors giving me That Look and going “uh have you thought about trying the mayo clinic?”), I am super duper susceptible to that sort of fatalism even in the best of times. of course “the best of times” is subjective when the world is objectively hellish and you have all variety of brain sicknesses that make you act irrationally at times (or perhaps THEY are the irrational ones and I am the sane one, I say while evilly stroking a cat which I am mildly allergic to), and then it doesn’t help when we’re in the midst of a global health crisis where people such as yourself are much more susceptible than average and people are willing to treat you as collateral damage—hell, I’m struggling to convince my own girlfriend (who I love more than anything and is my very best friend in the whole world and has taken me to the ER many a time) how serious this could be to someone like me with a compromised immune system, it’s impossible to get anyone else to believe it. you can’t help but feel like an afterthought at best and a liability at worst, you know?

and it’s also hard when, objectively speaking, I know I’m better off than most people in my situation (and maybe even better off than a lot of healthy people) to have a low-level office job with okay benefits and a nice boss who lets me work at home when I’m not feeling great, which is quite often (mostly because she is also chronically ill so she gets it the way most people don’t)… but even “better off” still sucks! it sucks having to pay out the ass for medical expenses (despite your “okay benefits” because american healthcare is a fucking grift) that seem to offer no answers and no cure, it sucks living in fear of losing the safety net you have or a routine that makes life manageable (sort of). and it sucks knowing that you’re not able to do a lot of Normal People Shit that other people take for granted.

so, you know. that’s already grim in the present tense, but then stretching that out for the entirety of your (statistically-shortened) lifespan when you realize you are most likely sick forever (a term which I love by the way, much more fun to say than “chronically ill” and really hammers home the reality of having a mild staph and/or fungal infection somewhere on your skin at any given moment) is exceptionally hard to reckon with. especially when I’m only 23 and have all these damn problems that are likely gonna get worse, not better, compounded by the number of times I’ve gone to see a new specialist and they ask “you’re how old, exactly?” in disbelief after seeing my chart, lol. it’s a very “I’m not like other girls, I have arthritis” moment. and that makes it super easy to fall into a bad line of thinking, either “oh god my life is going to be a miserable expanse of salonpas patches and amox-clav tablets until I die at the age of 61” or “well might as well burn bright and fast by running myself into the ground now until I’m a mere scuff on the pavement following a tragic BMX accident.”

I don’t want to insert some faux feel-good positivity here just for its own sake (and lord knows I am not that kind of person even on the best of days) but I also don’t want to just go on about how depressing and terrible things are for us forever-sicks so let me try to end here on a cautiously optimistic note. all I guess we can really do is treat ourselves kindly and allow ourselves the space to just Be Sick and ask for help and not feel inadequate for something beyond our control. like yeah having a whole host of health issues in my early 20s makes me weird and different, but that’s just one of many things that makes me weird and different, and of those things it’s probably the one that’s least compromising to my reputation, lol. and I don’t even mean that in one of those “don’t let your illness define you!” ways because, honestly, I personally do see illness as something that defines me. but it doesn’t define me any more than eating the exact same thing for lunch every day defines me or being way too into showtunes defines me or playing a lot of puzzle pirates in middle school defines me. the definition of “you” is multifaceted! though at the same time it’s like, yeah no shit that’s a nice thought, but being sick forever permeates nearly every aspect of your life in a very real and tangible way, whether you let that define you in some metaphysical way or not. obviously that’s harder. the best I can offer you here is to not give up (BOO, they say, pelting me with tomatoes and other rotten fruits), surround yourself with people who are there for you and make space for you in their lives—because the people who are worth it always will, I promise—and be your own patient advocate. you know yourself and your own body best and if that means you have to fight like hell to be heard: be that annoying patient! fuck them! and depending on what exactly makes you someone who is sick forever, there may be new treatment options on the horizon—my allergist (who I adore in the way a 23-year-old loves all her old man doctors) is always excitedly telling me about the new biologic injections being developed for people with autoimmune disorders.

it sucks and it’s a long fucking tunnel but there might be a little pinprick of light at the end of it, maybe. or it could just be a flickering dot in your vision about to turn into a migraine aura. but you gotta stick around to find out, right? alright I wrote enough shit already, I hope you’re doing okay friend and I’m rooting for you. sickies unite

#Anonymous

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tell-me-when-ur-ready · 5 years

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This Thing Called Love (part one)

Summary: When Shawn meets dancer Kellie in Toronto, he falls for her—hard. But Kellie has an invisible disability and thinks it’s impossible that someone could really love her the way she is.

Author’s note: I have multiple chronic illnesses that are similar to Kellie’s, but I don’t have the same exact health conditions she does. I’ve done lots of research, but I apologize if I get anything wrong!

Warnings: tiny bit of language

Word count: 1,400

It was May and only 11:00 in the morning, but it was already blazing hot by the time Kellie Martin stepped into the Toronto coffee shop for a drink. She flipped up her sunglasses and looked around; it was a Wednesday, and the place—a sophisticated (and expensive, she noticed with a grimace) yet homey café with green plants springing out of every nook and cranny—was busy.

“I can take whoever’s next,” the barista called, and with a quick glance at the menu, Kellie stepped up to the counter to place her order.

“It’ll probably be a few minutes,” the barista said when Kellie had finished paying, and Kellie nodded her head; that was fine with her. She wasn’t really focused on her coffee order, anyway—instead, she was mentally rehearsing her competition piece for the weekend, going through lyrics and steps and beats in her mind.

When Kellie’s name was called a few minutes later, she picked up her coffee and food absently, too out of it to even notice the predictable misspelling of her name. Music was still playing in her head, and she was chanting steps under her breath. Her mind was in the dance studio, not the coffee shop—that is, until she collided with something big, warm, and soft and felt a splash of hot coffee land on her chest.

“Shit, I’m so sorry,” said a familiar voice. Kellie looked up and blinked, unable to process what she was seeing. Shawn Mendes was standing in front of her, his phone dangling from his hand and one curl dangling over his forehead, wincing apologetically at the brown stain on her white shirt.

“Let me get you a napkin,” he said, turning toward the counter. He grabbed a fistful of napkins and held them out.

“Thanks,” Kellie said dumbly, juggling everything she was holding so she could dab at her shirt. She felt like she was moving on autopilot. She had just quite literally run into Shawn Mendes—what were the chances?

“I’m so sorry about that,” Shawn said. Kellie shook her head, tossing the napkins (which hadn’t helped much) in the trash.

“It’s okay. It was really my fault. I wasn’t watching where I was going.”

Somewhere in the back of her mind, another Kellie was sitting back with arms crossed, sagely nodding her head and congratulating real-life Kellie on acting so cool and composed when Shawn Peter Raul Mendes was in front of her (yes—she knew his full name).

She expected him to end the conversation then, to walk past her and place his order and go back to his life. But he didn’t. Instead, he shoved his phone into his pocket and kept looking at her, his gaze open and earnest.

“What did you get? I’ve never been here,” Shawn said next, nodding at the cup and the bag in her hand (against her better judgment, she’d gone over budget and gotten two things because it all looked so good).

“You’ve never been here before?” she asked, surprised. Toronto was his hometown—she figured he would know his way around all the coffee shops.

“Nuh-uh. It’s pretty new. And I’ve been traveling.” He paused and looked at her more closely, his eyebrows scrunching together. Someone brushed past him and he moved over a few steps without taking his eyes off of hers. “Do you live here?”

Kellie shook her head. “I’m from Atlanta. If you couldn’t tell.” She didn’t think she had a southern accent, but other people regularly informed her that she did.

“Well, I could definitely tell you’re not from here,” he said, a quick grin flashing across his face. “So—what’s good?”

“Oh! This is just a latte and this”—she shook the bag dangling from her fingers—“is a gluten-free brownie.”

“I don’t eat gluten either,” he said, eyes lighting up a little at something they seemed to have in common. “Doesn’t it make you feel so much better?”

And that was it—Kellie was out. She forced a smile, but the warning bells were going off; she was done. She tried to paste a polite look on her face, but Shawn must have noticed the change in her manner. As she tried to pull away and end the conversation, he reached out, fingers briefly brushing over her forearm.

“Hey, what are you in Toronto for?”

“A dance competition,” Kellie said reluctantly, turning back. Yes, it was Shawn Mendes and no, his comment hadn’t been that bad—but she’d been traveling all day yesterday, she could feel the beginnings of a migraine pushing at the corners of her vision, and she just wanted to go back to her hotel room and be alone.

“Oh, really?”

He perked up, and Kellie felt herself warming to him a little.

“Yeah. I’m actually—” She paused, suddenly feeling a little shy. “I’m competing a lyrical dance to In My Blood.”

She’d spent every night she could in the studio the last three months, his voice in her ears, the city lights twinkling outside, trying to jump and twirl and dance away the pain and confusion. Which is why it was so strange for him to be standing in front of her now, flesh and blood, all 6’2” of him (she was 5’7” and had never felt so short). She shared such an intimate relationship with his music, she’d kind of forgotten he was a real person.

“No way!” He laughed. “That’s so cool. Good luck.”

Kellie nodded and smiled her thanks, and there was a beat of awkward silence. She glanced around the coffee shop, still bustling—she noticed a teenage girl staring at her and Shawn—and was about to try again to make her escape (what was she even doing, standing here holding a full-on conversation with Shawn Mendes?) when he spoke again.

“Hey, I’m—well, this is kind of a secret, but I’m filming a music video in a few weeks and I need dancers. Do you… well… could I have your number?”

He blushed a little when he said it, and Kellie raised her eyebrows, his gluten-free comment forgotten. This was getting interesting.

“You’ve never seen me dance,” she pointed out. “You know nothing about me. I could be an ax murderer, or—”

He scoffed. “I highly doubt—” but she went on, talking over him.

“—or just one of your millions of fans who says she can dance because she took a year of ballet when she was a kid,” Kellie finished.

Shawn shrugged and spread his hands, a smile tugging at the corner of his mouth. “Fair enough,” he said. “But my team will be looking at lots of dancers, I’m sure, and we might as well throw your name in the ring. I mean, I guess they will. I’m not normally involved in that stuff, but—”

“Then why are you doing this now?” Kellie said, a half-genuine, half-confused and exasperated laugh slipping from her lips.

“Just give me your number,” he said with a sheepish laugh, a slight flush rising on his cheeks.

“Fine.”

He typed her name and number into his phone and said he’d get her in touch with the right people on his team; Kellie, ready for this bizarre conversation to be over, said she wouldn’t keep him any longer and sidled away. And finally she was out of the coffee shop, striding down the sidewalk with her forgotten drink in hand, back to her hotel and dance and her real life.

Did she want to see Shawn again? Um, yes. Absolutely. But was there any way she could be in his music video—or, a tiny voice added inside her as she remembered those hazel eyes and the one curl that kept flopping over his forehead, be with him any other way (not that that’s what he had in mind, because he was Shawn Mendes and she was a random girl from Atlanta)?

No—there absolutely wasn’t, even though it was what she wanted most in the world. And that hurt. A lot.

Before she’d reached the end of the block, her phone buzzed. She pulled it out of her pocket.

Would you want to get lunch before you leave town? To talk about the music video?

Kellie let out a huff of breath that was half laugh, half disbelieving snort and glanced back at the little white coffee shop on the quiet Toronto street behind her.

What the hell was happening?

#shawn mendes #shawn mendes imagines #shawn mendes fanfiction #shawn peter raul mendes #shawn mendes blurb #sm #shawn mendes fic #shawn mendes imagine #chronically ill

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sparkles-and-trash · 4 years

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I think you should put your health first, that is not a setback, but taking care of yourself! I wanted to ask, what kind of illnesses do you have? It seems like there is a lot, and as someone with chronic illness that provides me from going to college or work, I feel a little better knowing I'm not alone in a way. It is totally okay if you're not comfortable with answering!

I’m sorry I’ve taken a while to answer this, I just had to give it some thought.

As you probably know, I did decide to give myself a break for creating, taking requests and generally trying to constantly entertain people online, at least until I’m settled in my new apartment, hopefully in two-three weeks!

When it comes to what I have, I’m kinda not sure how much to share?

On one hand, I’m not ashamed or anything, but I’m not keen on being known for being sick or pitied, actually I kinda hate that. Sympathy can be good, but that’s not wanna base myself on, yanno?

But I also wanna be honest, and I guess I have nothing to hide, and since you’re asking so nicely, I’ll try to explain it simply!

I have had chronic migraines for a few years, and “normal” ones since I was five, but I get botox treatment every third month for that, so it’s getting a lot better!

I have scoliosis, and it was severe enough that there were damage done to my lungs and heart, which affects my life in a rather big scale today.

When I was 13 y/o I had my first scoliosis surgery, getting metal rods and screws set into my spine to straighten it. I got 7cm taller during that surgery, so I got stretched quite a bit!

When I was 16 I had to undergo surgery again, as my body reacted negatively to the steel, and they switched it with titanium. Another large scale surgery took a lot of energy and training afterwards, but it was worth it!

…until I turned 18 and issues started up again. This time I had to think a lot about future issues, as my only choice of surgery was removing all the titanium, and therefore risking having to straighten my spine again later, and that gives a big risk of me being paralyzed waist down.

But after a lot of help from doctors, I decided to remove the remaining metal, and I haven’t gotten any worse yet, which is a good sign!

After that surgery I finished vgs, which is basically High School, and was excited to start uni, got accepted to what I wanted and all was well. But that summer I started getting infections in my body all the time, I slept for 18-20 hours a day, and had constant joint pains.

Then I was diagnosed with Chronic Fatigue Syndrome, CFS, and my world high key fell apart.

I had to turn down uni and the only cure for this illnesses “waiting”, and I’ve done a lot of dumb shit, trying uni too early, working, just not listening to doctors, and it wasn’t until I ended up in the hospital with pretty serous issues based on the old damage the scoliosis had triggered in my organs, that I started taking this illness seriously.

Now it’s been 5-6 years, and this fall I’ve taken one (1) uni class, and boy, it was wonderful! I’m still not well, and I know I’ll never be. I have the heart, lungs, scoliosis, migraines and cfs, but I’m kind of managing.

I’m currently in testing for psoriatic arthritis, but that’s honestly just a small block in the tall tower at this point. I’ll make it work, I have to!

I’m currently very happy with taking one class, having my dog, my friends, riding two times a week, and trying to be active and create here when I can. It seriously gives me a sense of purpose in the worst times.

In early December I’m moving in to my own, brand new apartment, and I really feel like that might be a new start in many ways. New routine, my own life in a way!

Please don’t think this post is me fishing for sympathy lol, and I’m not gonna be that sick girl or anything. I mean I’ve already been her, and y’all are still here, so that’s good, right?

Anyways, life goes on, I can walk and talk and see and drive and things could be so much worse! I honestly believe life is what you make it, and I am very aware of what I have to work with, and motivated to make the best of it!

All my love, y’all

#hey yes I am very nervous about this #pls be nice maybe #personal #anon #txt #health history #scoliosis #cfs #cfs tag #chronic illness #chronic health tag

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elitemeowmix · 4 years

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Medical rant ahead because the “headache department” at my hospital is an absolute headache, an essay by Me

So I’ve been getting injections for daily migraines, and they’ve had some not great side effects:

godawful neuropathy/sensory issues. If I wear certain pieces of clothing/come into contact with certain fabrics, it feels like my body is on fire/itching/just generally painful (and sometimes it even occurs when I’m not wearing anything, so that’s fun). I’ve experienced this before because of my fibromyalgia, but never this frequently (it’s daily) and never at this severity (it’s absolutely intolerable, I feel like I need to peel off my skin). So, understandably, my wardrobe has been dramatically reduced because most of my clothes (including all of my socks, except fuzzy bedtime socks, which is A Look™ in public lol) are having this effect. One way it’s impacting me is that I can’t wear any gloves, and it’s about to be winter which means it’s hella cold out already, and my hands lose a lot of mobility in the cold so I use gloves at warmer temperatures than most people (yay fibromyalgia). I’ve also become sensitive to my sheets/towels/blankets so that’s fun and not inconvenient at all *sarcasm*

I’ve also had a completely nonexistent libido. Which, like, okay theoretically isn’t the worst side effect in the world. But (without going into all the details) this is very unusual for me -- I’ve literally never lost my sex drive no matter how stressed/depressed I’ve been, and only one oral birth control has ever even dampened my libido. I’ve never had it be nonexistent. Ever since I went through puberty, it’s been sky high and super distracting (e.g. an orgasm away keeps the distraction at bay). So needless to say, I’m not feeling like myself at all, because I’ve known and dealt with my high-libido self since I was in 5th grade. At first I thought this was due to a recent breakup, but it’s persisted way longer than I would have expected and at a severity that I’ve never experienced from any kind of stressful live event ever. So it seems likely to be caused by the injections because A) the timeline matches up really well and B) it would be super unusual for my birth control to out of the blue randomly cause these symptoms, since I’ve been on this one for about a year and a half now and have never experienced this side effect.

I also get these weird stomach cramps that are worst during the first week after I get the injection, so I know it’s definitely connected. I probably wouldn’t mind if that were the only issue with the injections, because I could probably just suck it up and deal.

although the injections have reduced the severity of my daily migraines, the beneficial effects have worn off increasingly sooner with each dose. After only a handful of injections, this current dose lasted only two weeks before I was back to my baseline. So it’s not like it’s eliminating my migraines, and now it’s not even working as long as it should.

SO. I did the logical thing and messaged my neurologist explaining all of the above, with some more detail here and there. And her response to me was:

the pain/sensory stuff if probably just an allergic reaction. (That was literally the extent of her response on this. Just one single sentence. Which is concerning for a number of reasons, the foremost being that if this were indeed an allergic reaction, shouldn’t you be telling your patient how to manage it?! Like “hey take some benadryl” or “stop the injections immediately” but apparently the welfare of her patients isn’t a concern to her I guess?)

the decreased sex drive isn’t related

GI issues aren’t uncommon

Let’s maybe schedule an appointment to talk about whether or not you should continue these injections

I was a little peeved because I felt like she’d just brushed off my concerns (she didn’t even address the fact that my quality of life was being compromised but nbd I guess), and I felt like she wasn’t listening to me. But I figured she was just busy and wanted to get me an answer sooner, even if it was brusque. So this was my response:

The sensory stuff could definitely be an allergic reaction, but it seems more likely to be an amplified version of what I was already experiencing with my fibromyalgia considering that I literally already experience that symptom. Regardless, it’s causing an unsustainable way of life, so this needs to change @soon because I’m starting to get desperate, and I’m usually a pretty patient person about crappy side effects

Hi hello so I spoke on the phone with my Ob/Gyn, and based on my medical history and the evidence at hand (e.g. the timeline), we believe that this nonexistent libido is most likely caused by the injection. Just to give you an update.

(stopped talking about it because meh)

So I got a text reminder asking me to confirm the shipment of my next injection. Should I cancel it? Or should I stay on it until my next appointment?

And, kids, this is where fit hit the shan, let me tell you. Because her response. God, I can’t. The audacity. This is what she decided was an appropriate response for a CARE provider to give:

(NO acknowledgement about the quality of life/issues caused by the sensory issues. No compassion at all)

DIRECT QUOTE: “there is no evidence in all the studies that have been done, [sic] that shows [injection name] causes decreased libido”

(skipping the GI issues again)

Are the injections helping your migraines? (I LITERALLY ANSWERED THAT IN THE FIRST MESSAGE) Because my recommendation is to stay on them until our appointment in January, and at that time we can see if a change in medications would be beneficial.

There was a point in my life where a physician’s blatant disregard of my concerns would’ve hurt, but I’m apparently past that point. I’m just angry. Like what do you mean, “IF a change in medications would beneficial”?! Did you not read all the ways that this is impacting me? Did you not read the part where I need something to change soon because this neuropathic pain is making me lose my mind? Also, where the FORK is your compassion?? A patient is having really crappy side effects, and your best answer is “see you in January”? REALLY?! I would honestly cry if I weren’t so mad.

Also WTF was with “there’s no evidence about” your symptom that you’ve report. SO passive aggressive wtf. Like bitch do you really think my body gives a flying fuck about whether or not this symptom has been “established” as an Official Symptom of this (relatively new, btw) medication? Because the last time I checked, my body does whatever it damn well pleases and doesn’t read the literature on what it’s “supposed” to do. I’ve had side effects from medications that less than 1% of patients on those medications experience -- and if you actually bothered to read my patient file, MAYBE YOU WOULD HAVE REALIZED THAT. Also, chronically ill bodies are often complicated?? That’s not a surprise to anyone, especially for illnesses that we don’t know a lot about, like fibromyalgia, which I have??? And NEWSFLASH EINSTEIN, individuals are *gasp* individual and - guess what - can have individual reactions to things! What a WILD concept! It’s almost like everyone has a unique genetic sequence. OH WAIT.

And what really gets my goat is the fact that this is the first time she’s just blatantly ignored me/my patient history/my concerns. At the very first visit, I told her that I had chronic fatigue. We moved on to other topics and didn’t talk about the fatigue again. But what did I see in the after-visit notes? She literally wrote “fatigue appears to be from [Medication X].” Well guess what JACKASS. If you had BOTHERED to ask me if that were true/if I’d noticed a connection, I would’ve said absolutely no way in hell, because I started Medication X in May and I’ve been experiencing this bone-tired fatigue for YEARS (yes, years plural). But guess what, even if you didn’t ask me that, you could’ve easily seen it in my patient profile!! But apparently you’re an all-knowing God who is Always Right All the Time so who needs to ask patients questions or check patient histories!!

I cannot stand doctors with God complexes. I have 0% tolerance for that. I can’t handle these doctors who think that their MD somehow makes them Better Than You, and obviously they’re always the one who is correct, not you, because they’re the one with the degree so obviously your lived experiences are Just Plain Wrong.

If you are THAT arrogant and THAT uncompassioante (not a word but whatever), you should NOT be in a position where you’re dealing with patients’ wellbeing. That’s not okay. But of course, as long as we live in a society that sees becoming a doctor as prestigious/a money-maker, there are going to keep being doctors like this. And I wish someone would just take them down a notch, because, dear god, would it kill them to actually listen to and take care of their patients???

Anywho. That was LONG.

I hope to god no one read this entire thing, because if so, I apologize for that experience but also wow that’s serious dedication to this post (idk if I’d even read this whole thing lol). I just needed to rant this entire thing and this is apparently my virtual diary. And also having this all written down is going to be helpful for when my memory (inevitably) fails to remember all of these details

#tw asshole doctors #tw medical #so frustrated I could scream #like why are you even a doctor if you don't care about your patients #that shouldn't be a thing and yet here we are #growl #hiss #migraine injections #bad doctors #personal stuff #sorry for the rant

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iglooface · 5 years

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My whole school career, despite how short it may be thus far, I have always been complimented and received positive remarks about how smart I was and how talented I was. They all find it strange that these are not traits I am proud of.

I grew up with depression, anxiety, and insomnia. My three original traits that have come to rule my life. I inherited mild depression from my mother, and anxiety and insomnia from my father. In all of my years in school except for the last I have been bullied mercilessly for everything about my being. It would vary from my hair, my style of clothing, my physical being, calling me ugly, exclusion, death threats, abandonment, being called names and excessively pointing out my mistakes (surprise! I'm human unlike most bastards I meet). I also had chronic nose bleeds, so from the beginning everyone was always grossed out by me for bleeding from my face nearly every day (most of my clothes are stained with my own blood because of this and I'm honestly too broke to afford new clothes very often). Even teachers and my own parents would put me down for nearly everything I did for one reason or the other; nothing I ever did was right. And to add more I'm often put after my sisters' needs and wants. I've never been prioritized.

I was, and still am, a sickly child. I've technically had my heart stopped and been dead twice before and I had a handful of major surgeries before my sophmore year in highschool. My doctors don't ever listen to me and they think I'm dramatic when I bring up actual chronic symptoms I suffer from.

As a child, we moved around a lot and so I switched schools often and was never able to make or keep friends. I come from a long line of verbally and emotionally abusive teachers who went on without consequence whilst I get in trouble for trying to fix myself. In grade school alone I had all but two of my teachers quit their jobs and/or be replaced after that year, if not during the middle.

Children are highly impressionable, and so these kinds of events did lead up to me thinking it was somehow my fault. Logically I know this not to be true, but impressions and mental illnesses are not logical.

In seventh grade alone, I had gone through 12 different prescriptions for pain and different types of birth control to regulate my period and my chronic cramps. It's highly likely that I had, and still have, endometriosis, yet my doctors are always reluctant to perform any blood tests on me simply because I am young, as if being young makes it entirely impossible for me to have health issues.

My periods were unstable to a point that I'd end up having one for thirteen days, or months apart. Given, young girls with periods often experience irregular cycles, but mine kept landing me in the hospital which is never a good sign.

I was bullied that year to a point that I tried to kill myself and failed, and I managed to avoid my parents finding out. This was the beginning of my incredibly high drug tolerance. At the end of that year, my favorite teacher was killed in a car accident.

The following year, it was found out I had massive ovarian cysts that were increasing my insomnia and put me in agonizing pain nearly every moment of my life. But my doctors refused to take action because I was young. That year I was further emotionally abused by a handful of my teachers. One of them, worse than others, was fired during the beginning of the third trimester of the school year. Her replacement, a long term substitute, was even worse. She had bullied and abused the class so hard that kids had killed themselves and I ended up getting conversion disorder.

Conversion disorder is a mental disorder in where my body cannot handle stress. My brain doesn't know how to function and deal with high stress situations, so instead it shuts off my physical body. Symptoms vary from person to person, but mine are on more of the extreme end. It varies from extreme memory loss, seizures, not breathing, choking on white foam produced by my body, screaming unconsciously, blacking out, temporary amnesia, and paralysis. This is a condition that I cannot control under any circumstances, and it truly dictates my life.

Now my mom had gone to the principal (the school cycles through five in a single school year because of a whole lot of drama) to report this teacher and get a new one. And instead of acting reasonably, the principal quite literally told us she wouldn't look into a replacement because it wouldn't change anything.

And, oh, how wrong she was.

I had previously had mild anxiety and depression from previous life experiences, but this year pushed me to be anxious to a fault (granting me a new stutter, hours long panic and anxiety attacks, migraines, etc), and pushed me into such a strong depression I became highly suicidal and went into an emotional shock. And because of this I also gained PTSD, which is a whole trip within itself.

Freshman year was a wreck. Another one of my middle school teachers had died; she died from cancer and was one of very few people who were ever nice to me. I was being bullied on a whole new level of horrid, and I was flunking every class I had been in. My conversion disorder episodes became do frequent and so severe that the school actually kicked me out illegally for about two months before they continued my education on independent study. That year my dog was put down. And normally that wouldn't be such a big deal except for the part she was quite literally my only friend for three years.

Even worse; I was in recovery after one of my more major surgeries to get my ovarian cysts removed to help with my pain and sleeping problems. I was fragile and under the influence of strong drugs when I decided to take my dog on a walk around my property for the first time in a month because I had been on bed rest. She had seen my neighbor, and gotten freaked out by him (he radiates massive pedophile vibes) and so she jumped on him. Now this over privileged scumbag thought the appropriate response was to threaten to shoot my dog if he ever saw her again no matter the circumstance, and proceeded to curse me out profusely all while I tried to apologise and make it right.

My dog had become a liability because of this man and we had to put her down. Take in mind she was an amazing dog, and had never disobeyed me. She was protective of me as she had been since we adopted her and was genuinely the best thing that has ever happened to me. She'd check on me when I cried and lay with me when I was sick, and was there for me more often that my actual parents were.

The next year, I was bullied slightly less, but I had a great ordeal of friend drama and my fair amount of fights with the office staff. One of my friends, who I thought was close to me, had threatened to kill me after I offended her exactly once. I had a bad day after another episode and she had built this reputation of not feeling and being unattached to the real world. I wasn't in the mood to deal with people and when she asked me if I was okay I questioned why she cared. That was it. Later I had apologized because I had come to terms that I was in the wrong for dismantling her emotions, but she decided to take it too far.

One of my teachers was permanently removed from the school for having nudes on a school device, and they brought in a long term substitute. This was about when my PTSD really started to kick me in the nuts, so I went back on independent study to complete the year. My only other friends moved away and my significant other had killed himself after killing himself shortly after telling me he loved me.

I don't expect people to understand the kind of psychological damage this causes to a person, but I can tell you that it hurts.

I was referred to a continuation school in my area for flunking both years of highschool, and this continuation school had a bad reputation of being troubled kids and violent beings.

I get there, I spend my year being amazed by how nice people are to me. This is the first year of my life I have ever been treated like a human, and it was by the people society had deemed misfits. I had a great year; I made friends and built connections to people. And then my friends left me, and my favorite teacher was fired simply for being a first year. My other teacher left the school year early for maternity leave, and, guess what, was replaced by a long term substitute. I don't think I've ever panicked as hard as I did in those months. Similar timing, same school subject, similar classroom. All of the stressors were right and I nearly fell apart at the seams. I had more frequent and severe migraines and anxiety attacks. My hands would shake in fear so hard I couldn't write, which was bad because the classes I had with that teacher were exclusively note taking and online courses. This substitute wasn't a bad person. He was competent and polite and was always helpful, but my mental illnesses and brain blocks caused me to lose the opportunity to work with them successfully. In the last trimester I tried to kill myself three times, and I accidentally overdosed on drugs about 14 times over the whole year. I almost died a lot by my own doing and it was horrible.

Children need stability to survive and develop normally and I had been deprived of both, as well as emotional stability and positive reinforcement.

Now, during these times I had coping methods. I draw and write professionally to distract myself from the physical pain in my being if not just stress plain and simple. I watched documentaries and studied nearly every subject during my sleepless nights. My coping method was learning, practicing, evolving, and then teaching. My IQ had beat the range of average and I've had a reading level ranked at post college since I was in middle school. And this fall I'm a senior and I've only been ranked higher and higher each year. I've always gotten extra credit on every individual assignment and I've always been too of my class. My teachers love my art, and I had exceeded my professional art teacher within weeks of knowing her. I see, I practice, I perfect, I personalize every trait and skill I want and find intriguing. I study and develop to keep myself from remembering the agony I'm in.

I have a really wide and extensive knowledge on almost every subject and culture I've come across from, because being awake and learning for days on end beats being awake and in agony for days on end.

Along with my severe insomnia, it becomes apparent that I've seen more sunrises than the amount of years most adults have been alive. My walks under the starlight and the moon at odd hours? Amazing. Laying in a field at night and listening to all the little creatures and the coyotes howling in the distance? Perfect. Stargazing in my driveway on a clear night in the winter? Cold to my bones but I'd never trade the memory. Walking home in the rain at 11 a.m.? It's made me wiser. Taking a moment to breathe in and feel nature has sometimes saved me.

My bones definitely creak; mostly because I have juvenile arthritis, but I also feel ancient in my mind.

The wear and tear my body has faced for such a physically young being is unnatural. I can't describe the strange feelings of almost bleeding to death or stomach ulcers brought on by stress.

Those weird feelings of my bones cracking wrong or my knees suddenly giving out.

I've seen more of the Galaxy from here on earth than most adults have ever seen in a poster.

The meteor showers, the shooting stars, the solar flares, the cycles of the moon, the constellations? They accompany me on my walk down to my death.

Even better, looking up daily to love the clouds. I've seen amazing things and infinite days in mere minutes.

The feeling of cool streams and powerful rivers. Almost drowning in the ocean on multiple occasions, feeling the rain on my face. Those are the most powerful moments I've ever experienced.

Hearing the cry of infantile wildlife and mothering it feels like an old friend of mine. I cannot emphasize on how many creatures I've fostered back to health.

I've seen life and I've seen death, and quite too much of it for my age. The wars, the shootings, the stabbings and car accidents. People hanging themselves and people who die clear well before their body does. The births i e witnessed, the blooming of Meadows, the appearance of the new foxes.

Aiding things that normally need help and defending those who have lost their shields. Befriending things considered monsters. Providing a moment of peace for animals searching for the bridge of mortality.

The comfort I bring to people, the therapy I provide from listening and accepting, it was never something I had received myself.

My therapist diagnosed me a sociopath path as an ignorant response to seeing my lack of attachment to people. Technically she's not wrong, I'm a mild sociopath.

And before anyone gets weirded out, sociopaths do have feelings. They are simply harder to reach and read by strangers or common uninvolved people. Psychopaths pretend to care when they don't really. They are violent and unpredictable. Do not confuse us, do your research.

My English teacher this year had made a remark about me being an old soul, and oh, how right she was. I am ancient and people notice.

Life has been forever as I have been forever. My heart is still there, just ground to a fine sand and stored somewhere safer.

I'm tired, of course from my worrying for the human race and how much trouble people are creating these days. The people, they see me and tell me to smile, yet I have nothing to smile for.

My pain killers are border line overdose and all they do is make me a little dizzy. The last time I had pain relief was five years ago in a hospital. I had been in so much pain I hadn't slept in 17 days and they out me on morphine. I was only 12 years old and it was then it had become apparent I'd never be able to truly rest.

Somehow, I rest anyways. I find peace somewhere. Maybe in my hallucinations, maybe in my dreaming and dissociating, maybe in the way the trees speak. Listen to them, the trees, they can tell you more than a life time of science and precision.

I exist, not to overpower someone else's suffering, but instead to offer safety and support. I share so much to emphasize how much I understand. I'm not here as competition to see who can suffer more, but instead I am here to offer a helping hand to keep other people out of the pit of depression I often find myself in.

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chronic-confessions · 6 years

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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.

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