larareidsminds

[larareidsminds]

got rid of my old alias 😦😦

don't forget me 🥺🥺

[larareidsminds]

I don't have fibro but i do have hsd which comes hand in hand with chronic pain and fatigue so i have my own little list (some might be the same and i do have a couple in the list above i left out: like gloves) (i hope this is also welcome here)

• Snacks !!!!!!

A lot of the time I'm too tired to go make real food so snacks are always a big thing for me, I'm trying to find some healthier snacks and I'm a savory person so i tend to go for things like seaweed/lentil/vegatable chips or something like that, but I'll always tend to keep something in my bag/in a specific place just in case.

• A water bottle (either reusing a plastic one or just idk a water bottle)

Idk why but i do not remember to drink water unless i have something i need to keep refilling like a bottle. It's less about ease of access and more remembering to stay hydrated for me. and you can also decorate and personalise them 😼

• Electrolyte tablets/drinks

Just a good pick-me-up and an easy way to get extra hydration, idk, i just like having them.

• Pain killers

I feel like that's a given but I take them everywhere with me even if I'm just laying in bed they'll be like right next to me rather than with the miscellaneous medicines downstairs. (is this a common thing in families or does everyone tend to have their own?)

• A pillow or blanket or small plushie

The pillow and blanket are more at-home comfort things for if i want to rest my head or legs or whatever (especially with HSD i find this so useful because my joints are just *raspberry* :p) but if I'm going to say an appointment or meeting people or even just know I'm going to have a long day i like to carry a little guy in a pocket in my bag, whether he's a tiny plushie or a little syllvanian family (idk how to spell that), or i even have those little troll toys and little dinosaur toys, just something that I know will being me joy and comfort and is something tactile that I can hold on to. I guess grounding in a way? idk if I'm using that right

I probably have more but that's all I can think of rn lol

Fibro folks, what items do you like to always have at hand?

I'd like to compile a master list of aids/tools/treats that are helpful for people with fibro and make it into a post for the end of Fibromyalgia Awareness Month... So what's always on your bedside table or in your bag? Or if you could have a chronic illness support station beside you, what would it be stocked with?

I'll start us off... Things I like to keep nearby:

Lip balm and moisturizer because my meds dry me out

Dry mouth gel (why do so many meds cause dry mouth?!)

Gloves and spare socks to keep me warm

Meds (it's so annoying having to get up and look for meds when you're in pain)

Wipes for easy face washing or for my daily ritual of spilling my coffee on myself

Straws for when I'm not comfortable sitting up fully

[larareidsminds]

I miss my old job so much, it was the first and last job i ever enjoyed but after they let me go when my contract ran out i knew that i could never work the hours they would want for me to come back, nor the hours any job would be looking for really, and it breaks my heart because it was a job i truly had love and passion for. Sure it was only selling DVDs and CDs and vinyls but it was something. Something that actually brought me joy and made me feel like a "real person". Now i feel like I'm a failure because I can't conform to society in the way they want me to, and I'm only 18 (almost 19 now yikes), i still have a full life ahead of me, and that's so scary. I know I don't need to work to be a "real person" or "not a failure", illness or not I'm still me and I'm still doing the best that I can, but it hurts remembering the things i used to be able to do and wishing and hoping i can get back to that point even though i may never be able to. I don't know if i will ever be able to work again and it's scary to think that i could spend the rest of my life not doing anything because I'm too in the limbo of "Will this end up worse for me and my health in the long run if i take this on?"

It's not that we don't want to work, hell, some of us still do work in our own ways (small businesses, advocating, things like that), but those who can't even do that whether due to health or opportunities a lot of us actually miss being able to work. If i was healthy and the place was willing to take me back i would say yes in a heartbeat, and I know a lot of other people who probably would too. Just because we're not working doesn't mean we're lazy, you don't know what struggles someone else is going through.

What is like not working because of chronic illness?

“I wish people knew how much I miss my job. I stayed far longer than I should have and probably did more damage to my body than I needed to, because it was such an important part of my life. I lost 95 percent of my social life when I left — being single and at home all day every day is incredibly isolating, not to mention how guilty you feel not doing your part. Every day I hope that I’ll be able to work again someday soon �� there are only so many episodes of ‘Law and Order: SVU’ a person can watch.”

“My husband reminds me that he would rather have me around than have me try to work a lot and wind up in the hospital. It’s not even like I end up doing all the housework when I’m home all day. Sometimes getting one thing done is a monumental achievement. And being home all the time can be really lonely. If I had the energy and the physical stamina to be out and work, everyday life would be more fun.”

[larareidsminds]

baby fever update

(please ignore the state of my nails i need to remove them 💔)

Here's Delia-Hope :) ❤️

Already holding her and just seeing her face for the first time i felt so emotional.

It's like i can feel that maternal part of me awakening and feeling comforted.

She looks and feels so real i can't get over it...

People may judge me, but it's not only for the maternal reasons that i got her, she really is an art piece, I'm so so amazed by the artist's skill and attention to detail. I collect porcelain dolls, and whilst she might have a deeper meaning than some of my other dolls, she's also something to collect, to cherish.

was talking to my friend about how I've had really bad baby fever recently

and I've been writing and reading all of these mom!reader fics, joked about how idk which came first and/or influenced the other, etc, and on the down low I've been researching a lot about pregnancy and newborn care both for writing purposes and just out of curiosity,

and she knows that I'm like- not infertile completely but it'd be hard for me to conceive, plus my health conditions on top of that idk if it's just like- the smartest thing? like I've talked to her about it before,

and she asked, or like said "could you be living vicariously through the characters you write and/or read? because you might not get that and you want to know how it feels?" (not those exact words but like that was the general idea)

and my mind was blown like

wait- omg? OMG? like I'd never thought of it that way before or even thought to connect the two but like- that makes sense?? like i want a baby so bad, I'm definitely not in the place to have one rn whether I'm able to or not, but the thought that i can't is upsetting sometimes... and writing these I feel so genuinely happy for the characters and the reader and like, idk if it's weird to cry or feel emotional about fics but i do and like...

idk 😔

i don't wanna get sad on here or anything i just thought it was interesting 🤷

[larareidsminds]

i have my physio appointment date already, it's in a month‼️😼

not complaining but also why are we moving so fast all of a sudden woah 😭😭

[larareidsminds]

just told my "step-dad" what's what after like 16 years of bullshit and it feels so freeing

like I'm 18 I don't need to be scared of him or what he's gonna say/do anymore, plus he lives an hour away I literally dgaf about what he thinks

he left and doesn't make much effort anymore (recently), thats on him

[larareidsminds]

back from the hospital,

im hypermobile and flat-footed !

answers finally

but also confusion because it still doesn't feel right

but they're referring me to physiotherapy so... i guess that's it?

[larareidsminds]

i haven't updated much but

seeing a rheumatologist today !!

first appointment so kinda nervous 🥹🥹

[larareidsminds]

my younger sister really hates me atm and idk why, idk what i did...

she hasn't like done anything huge so I can't tell anyone like "hey, she's been really mean to me recently..." it's just like small things

she's constantly erasing me from things, leaving me out of things, basically getting rid of any evidence i live here (her things are everywhere, in every room she has something, but all my things are hidden away and she complains when they're not)

it doesn't help that she's the favorite child either, and i know I'm sick now but she was sick as a kid and the whole glass child thing is still in her favor

could she be feeling that way towards me? even though its blatantly obvious that she's the favorite??

she gets literally everything she wants, never has to walk herself places, never has to tidy up for herself or make herself food, she constantly has more money than me and she's a teenager, she can do basically whatever she wants with no punishment, if rooms are being redecorated (which we do regularly, mainly living room, kitchen, dining room, etc tho) hers is always first, she's had it redecorated like three times since i last had mine done when nothing has been wrong with it

i don't know what to do anymore... i want to be a good big sister but she hurts me so much, and it's so hard to watch her get everything she wants whilst I'm struggling and having to beg my mom for help sometimes...

[larareidsminds]

cw: mold, chronic illness bedroom stuff, just very gross and I'm embarrassed

so over the past few weeks that my chronic illness has been like the worst it's ever been, my bedroom has become a state, and I'm so embarrassed i let it get to the point it did

but i took a couple of mugs up there after i fell ill, and by the time I've recovered (like right now, even if I'm not fully over it, I'm able to do stuff again and I'm not stuck in bed) they grew mold

I'm so embarrassed to admit this

but the reason I'm posting this:

is because i am terrified of mold and i have such bad health anxiety and it all just was so overwhelming on top of what i was already experiencing,

but i couldn't do anything about it because again, i was so ill that i could not get out of bed.

but today i did.

without any help i cleaned those mugs and i brought down anything else that i left there whilst i was ill

and I'm so proud of myself

it was hard and i was scared, but i did it.

there's still a lot i need to do to make my room presentable again, but it's a start, and an important one

that's all, just a small victory :)

[larareidsminds]

something that's been haunting me recently about my chronic pain recently is the thought:

"If i were a family pet, i would've been put out of my misery by now"

meaning: if i was a pet, i would've been euthanized because there is nothing that can be done for my pain and it is simply kinder to just let me go

i hate this thought, i hate that i have it, because then i think about everyone else in the world with this kind of pain and worse who just want to live their lives, and who am i to say they should be "put down", that's so evil?

but it's something that keeps coming to my mind and it makes me feel so... pessimistic?

i genuinely don't know what to do for my pain anymore, I'm being referred to a specialist but honestly I'm afraid they're going to tell me there's nothing that can be done and I'll live like this forever

i don't want to live like this forever

sleep is equally the only peace i have and my biggest enemy...

i want to be more optimistic about my life but it's so so hard

[larareidsminds]

what's my chronic illness crime for today you may ask?

i got up at a reasonable time and ate breakfast... 😐

and now everything hurts and i need a nap or three

[larareidsminds]

i started my new medication and it made me feel really weird and my mind is full panic mode and I don't like it :(

i took the tablet at 6-7pm

I was okay at first i just felt a little loopy

then a few hours passed and i felt fine so i tried to sleep

it was very restless and i honestly don't remember much of it now

but i started feeling weird around 12 hours after i took it so idk if this is just me being ill beforehand and the timing making me panic or what

i felt like i was trembling but i wasn't (mainly in my jaw? which has since actually started to tremble), i feel nauseous, i still feel a little dizzy, and I'm super thirsty but when i drink water i feel like I'm going to throw up, and at some point my tongue started to tingle and I can't tell if thats gone yet.

is this worrying? should i do anything? should i stop taking the medication? because i really don't like this I'm so worried and feel so so ill i hate it

i know i should give it time but i really don't like feeling this way...

[larareidsminds]

"what if my amount of pain is normal and everyone else is experiencing this too and im just being dramatic"

and i haven't been able to get out of bed for the past 2 days

Uh-oh, coming down with a case of “what-if-a-bunch-of-other-people-experience-these-symptoms-as-bad-as-I-do-but-they-suck-it-up-and-work-anyway-and-I’m-just-being-a-little-bitch”-itis

[larareidsminds]

me: maybe i am not chronically ill, maybe people are right and i just need to push harder and stop being lazy

me going through a massive flare: fucking hell

[larareidsminds]

diagnosis/progress update

i haven't been diagnosed with anything yet, all my bloods came back fine

I'm being referred to a specialist, a rheumatologist, but it may take a while to get an appointment

two doctors now have said it sounds like fibromyalgia and they think i could have it

but we're still in the process of ruling everything else out

I've been prescribed a new antidepressant that could help fibro pain, so hopefully they do something?

but yeah 👍 going good i think

I'm also in a reaaaally bad flare up today 🤕🤕

[larareidsminds]

reblogging from here too because it's more of a here topic now

but i really do want a baby so bad and It's hitting me that i need to come to terms with not having one because of various things (mainly health reasons)

I've been looking at those reborn dolls too because just holding it or having something to be like... idk to look after? but not really?

Idk, I'm so embarrassed to say it because like i know a lot of people look at them weirdly, but i just think it would be so therapeutic, and i saw that people get them just to like give them something to look after idk

they're just so expensive and my mother would never let me buy one even tho its my own money 🥲

it's hitting so hard tonight idk why... i just want a baby :(

was talking to my friend about how I've had really bad baby fever recently

and I've been writing and reading all of these mom!reader fics, joked about how idk which came first and/or influenced the other, etc, and on the down low I've been researching a lot about pregnancy and newborn care both for writing purposes and just out of curiosity,

and she knows that I'm like- not infertile completely but it'd be hard for me to conceive, plus my health conditions on top of that idk if it's just like- the smartest thing? like I've talked to her about it before,

and she asked, or like said "could you be living vicariously through the characters you write and/or read? because you might not get that and you want to know how it feels?" (not those exact words but like that was the general idea)

and my mind was blown like

wait- omg? OMG? like I'd never thought of it that way before or even thought to connect the two but like- that makes sense?? like i want a baby so bad, I'm definitely not in the place to have one rn whether I'm able to or not, but the thought that i can't is upsetting sometimes... and writing these I feel so genuinely happy for the characters and the reader and like, idk if it's weird to cry or feel emotional about fics but i do and like...

idk 😔

i don't wanna get sad on here or anything i just thought it was interesting 🤷