[byond-insanity]

This is a dangerous thing to say to anyone suffering with any condition. Not only does it minimize the suffering that person is going through but it could also stop them from getting the help they need.

"It could be worse" or "It can't be that bad" were the phrases I heard while fighting to get my diagnosis. So many times I wanted to give up as they made me feel crazy for thinking the pain I was suffering with was bad.

Just because someone else is suffering "worse" than you are does not mean you are not suffering. It does not mean you don't deserve the same care and compassion others receive.

We are all fighting our battles and we should be kind to every one of the warriors.

#invisibleillness #chronicillness #fibromyalgiaawareness #fibromyalgia #chronicpain #adhd #chronicfatigue #cptsd #disabilityawareness #depressionawareness #eyeopener #keepgoing #mentalhealth #mentalhealthawareness #notallthesame #symptoms #spoonielife #spoonie #therapy #treatments #understanding

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[spooniealyx]

In case anyone's paying attention, sorry it's been so long. Things haven't been great. Riding the depression rollercoaster still, waiting on a referral for a second opinion regarding my probable Crohn's, fighting with my insurance for the second opinion on spinal surgery, and now my back pain has settled into my pelvis and sacroiliac joints. I move and feel things popping back there. So yeah. Haven't much felt like hopping on here to talk.

Spending this evening miserably ill. Tis the season for allergies, and mine have given me a sinus cold, my stomach is acting up because of it, and I'm in so much pain I can't stand up straight. (There's a gay joke in there, but make it yourselves, I'm too tired lol) Trying to at least drink my juice, even if I don't finish dinner. Gotta stay hydrated with how much I've been on the toilet.

In non-health news, my roommate and I got chicks! She's got three, and I fell in love with the cochin bantam chicks, so she got me two. If anyone's interested, I'll post pics. We've had them for a week now, and their little peeps just make me smile no matter how bad my day is.

And that's the Alyx news. Just spending time trying to pretend I'm not in pain or feeling half dead, and being a chicken tender! I swear I'll try to update this blog more often, but I really can't make any promises. I have been so low spoons for so long I don't remember what it feels like to have any. But I'll try! Thanks for reading, y'all. Take care of yourself, hydrate, eat if you can, and remember putting your needs first is not selfish, it's self-care.

[spooniealyx]

It's been a while. I'm sorry. Things haven't been great. Colonoscopy turned up nothing other than inflammation in my stomach. I'm getting a pill camera for my small intestine, but my GI isn't super hopeful. I've been yanked off the naproxen I've been taking for almost 2 years (yeah, I *know* it's bad for my stomach, don't tell me), which means that my back is worse. Tylenol doesn't touch it. I can barely walk, everything from the base of my ribcage down is in constant, intense pain. It's making my migraines return. And the only painkiller my doctor is willing to prescribe right now is tramadol, so I can't even take it every day. At least I'm in talks for scheduling a surgery consult in a city 6 hours away. God, I hope to hell they can do a zoom call.

In better news, I've gotten more fish since my last post. Now up to three fishtanks! Getting a better light and glass lid for my bathroom betta, and a great filter for the new fish. Been able to eat a bit better, and I'm definitely getting enough sleep. Gabapentin knocks me on my ass.

My roommate's cats have been more snuggly with me lately. I think they know I don't feel well.

And that's it! I'll try to keep updating, but between appointments, medication increases/additions, and generally feeling awful, it's difficult to want to keep posting bad news.

[spooniealyx]

God I hate having to do this. Begging for money is not a thing I enjoy at all. But I'm getting desperate. I need clothes. My meds and medical conditions have caused me to bloat so badly I've gone from 132lbs to 151lbs in the space of a few months. My clothes are 3+ years old. I need help, very badly.

My disability claim was rejected, and the lawyer I've been trying to get to help me appeal has not returned any of my calls. I've been out of work since Oct 2019. I have absolutely no way to get any clothes, short of the kindness of strangers.

I know everyone is short on money right now. We are all struggling. But please, if nothing else, reblog this so someone else can see it too.

I've started a gofundme, but I know people may not like using that. I'm more than willing to give out my PayPal to anyone who would rather use that. Just send me a message.

Alyx needs clothes, organized by Alyx Shade

Hi everyone, my name is Alyx. I'm a queer disabled person, and I've been rejected for disability. Two ye… Alyx Shade needs your support for

[fractalsinthefragments]

My Heating Pad and Me: A Love Story

[spooniealyx]

As I found this, I literally have my heating pad wrapped across my stomach, waiting for the heat to make it hurt less so I can move it to my back.

Definitely a love story here.

[idk-anymore-dude-deactivated202]

Abled: Why are you using a mobility aid? What’s wrong with you?

Me: *grimaces and gives quick explanation*

Abled: Oh, I’m so sorry! That must be so awful! I feel so bad! You’re so inspiring though!

Me:

[spooniealyx]

Colonoscopy prep starts tomorrow. I've got the meds I need, I've got jello and chicken broth and orange Gatorade. I still don't feel ready for this disaster. But by Monday afternoon, I *should* have some idea of what I'm dealing with.

Not particularly looking forward to my first colonoscopy. The endo doesn't worry me, but I'm annoyed they'll be pumping my stomach. Gonna wake up feeling like I haven't eaten in my entire life. 😂

The timing of meds and check in time at the hospital means there's no point in sleeping tomorrow night. So two naps will have to suffice. At least I can spend Monday basically catching up on the lost sleep. I hope.

Gonna enjoy the liquid diet though, roomie is allergic to gelatin so jello isn't really a thing in this house. A whole packet, just for me. Yum!

[spooniealyx]

Hey y'all. Haven't been around much lately. Pain has been really awful, need to appeal my disability decision, but on the bright side I'm getting scoped Monday morning! I gotta go get tested for covid Friday morning, and need to call my GI about the prescription stuff I need to be taking before my scopes. I don't have the prescriptions yet, and my pharmacy hasn't heard anything from her office, either. So yay anxiety inducing call.

My bathroom betta buddy will be getting a snail friend soon, just need to get their tank water to something not so dangerous, and get most of the saltwater treatment Merlin needed out of his tank. The unintended free snails (we got bladder snails on one of our plants for the big tank, oops) just laid eggs this morning, too, so give it a week and there will be snabies (snail babies)! I'm excited, roommate is not. 😂

Hoping I get a diagnosis of something after my scopes are done. We will see what Monday brings.

As a side note, since my disability claim was rejected (because yay US government), a friend convinced me to attempt a gofundme to try to get a computer so I can do things with my friends. Link is below!

Help Alyx socialise, organized by Alyx Shade

Hello, I'm Alyx, a disabled queer person. Almost two years ago, I sprained my back on the job due to su… Alyx Shade needs your support for H

[spooniealyx]

The day after Thanksgiving.

Yesterday, I was thankful for my friends and found family who have helped and supported me through this last year as things started getting really bad. I neglected to be thankful for the relatively pain free day. My roommate and I decided to cook a mini Thanksgiving dinner, which was delicious! Since we're both spoonies, we opted for chicken breasts instead of turkey, and with my food requirements, the only sides were potatoes, cranberry sauce (jellied and from a can, yum!), and stuffing. Best dinner I've had for the holiday, honestly. Great food, better company, it was a wonderful day.

Barely slept last night. First it was my back hurting too much, probably from sitting up so long to help cook. Then my stomach took over and hasn't let up one bit. Almost stayed in bed today, because it's just too much pain to be standing. Worth it for the holiday yesterday? I really don't know. But I hope this doesn't happen again next month for the solstice/Christmas.

Gonna eat as cleanly as I can today and try to get rid of some of this pain. Hope everyone's having a good post-holiday day today!

[spooniealyx]

Found the problem! ......after I ate leftovers, because I'm an idiot and wanted some with dinner. The stuffing mix we got had barley flour in it. So. I brought this on myself with an ingredient fail. Damn it.

Guess I know for next time!

[spooniealyx]

The day after Thanksgiving.

Yesterday, I was thankful for my friends and found family who have helped and supported me through this last year as things started getting really bad. I neglected to be thankful for the relatively pain free day. My roommate and I decided to cook a mini Thanksgiving dinner, which was delicious! Since we're both spoonies, we opted for chicken breasts instead of turkey, and with my food requirements, the only sides were potatoes, cranberry sauce (jellied and from a can, yum!), and stuffing. Best dinner I've had for the holiday, honestly. Great food, better company, it was a wonderful day.

Barely slept last night. First it was my back hurting too much, probably from sitting up so long to help cook. Then my stomach took over and hasn't let up one bit. Almost stayed in bed today, because it's just too much pain to be standing. Worth it for the holiday yesterday? I really don't know. But I hope this doesn't happen again next month for the solstice/Christmas.

Gonna eat as cleanly as I can today and try to get rid of some of this pain. Hope everyone's having a good post-holiday day today!

[spooniealyx]

Today hasn't been too bad. Watched my bestest friend in a gaming tournament (her team won!), roommate and I are working our way through the Marvel movies in timeline order, and I got kitty snuggles!

Took a post-tournament nap, and was awakened by pretty nasty stomach pain. It's been pain, nausea, and diarrhea ever since. At least I can still eat. Sitting here with dino nuggets and mashed potatoes, and it's helping my nausea at least.

Anxiety has been bad today, depression has been good. Back/hip pain hasn't been awful. Overall, I'll call this a good day! Might look into a small fishtank for my bathroom....if I'm gonna spend this much time in there, I'd like a friend or two for company!

[spooniealyx]

Thought back pain was doing pretty well today, though stomach is still pissed off because two night ago I decided "what the hell, let's do spanikopita again!" Was getting dinner tonight and had a sharp stabby pain in my left hip that damn near put me on the floor. Now I'm laying on the couch, refusing to move, and feeling my legs slowly going numb again.

But the neurosurgeon thinks there's "nothing beneficial" he could do surgically. Guess I'll just wait till I'm paralysed?

[spooniealyx]

Well, just in case I wasn't stressed out enough, what with American politics, my neurosurgeon refuses to do my surgery. He claims there's nothing that would be surgically beneficial for me. So I guess I'm getting referred 6+ hours away. To a strange hospital I've never been to. I hate new places, I hate hospitals, I hate the idea of surgery. I just want the pain to stop.

I've gone mute for the day from stress. Probably will be again when I have to go to the new hospital. In a huge city. During the pandemic.

I hate this. I wish I could just be what society calls normal.

[lillyrosaura]

There’s a website where you can learn ASL (American Sign Language) on your own, free and it’s a 31 Day program! The woman on there, her name is Rochelle Barlow, she runs the site and she actually is a homeschool teacher and teaches ASL. I am passing this on to some of you guys cause most of y’all on here is open-minded and curious and it is something important to learn.

I truly believe this site is helpful for some people who can not afford to going to ASL classes, or someone like me that just enjoys learning something new. This site will help with that. Once you sign up you will put in your email address and Rochelle sends you emails on tips on how to sign, gives you practice sheets, and gives you your weekly videos. And its all online. No need to paying for anything. (Unless if you want to she has something very different to this program) 

IMO and yes, this site is really amazing and is important because you never know if someone who is deaf or HOH needs help, if you end up losing your hearing ability this is something you will at least have on the back of your head, and it is just like any other language and should be taught. 

[whisperanzarose]

The link has been updated: https://aslrochelle.com/start-here

:D

[spooniealyx]

For any semi/nonverbal friends out there that might want to learn!

[persomnus-deactivated20250311]

My family is always overestimating my speech ability and my sister is the worst. The ideas in my head are so much more complex and well versed than what I can say. I have such a hard time voicing my thoughts properly, especially when it’s a debate or fight and I have to think quickly.

But my sister will completely disregard my meaning, and argue over my phrasing despite admitting she knew what I meant. And it makes me feel so sad and self loathing and stupid. I know I can phrase it better but my mouth does not cooperate. So I end up majorly simplifying my thoughts and end up saying more ambiguous words that lack the right connotation. It’s why I’ll use more complex grammar and vocab while writing but most of what comes out of my mouth is fairly simple.

And then I look extra stupid after someone starts arguing my schematics because I get so upset that I shutdown and/or go nonverbal. And by then my family is too angry at me to give a fuck and just leave me there because I can’t explain why it upset me so much. They just think I got mad about losing the debate/argument.

[spooniealyx]

Omg I thought it was just me! I can argue over text, but get me in a verbal argument and I'm tripping over my words and nothing comes out right and I just cry because no that's not what I wanted to say but now they think it is and they feel superior like they've won.

I hate verbal debates/arguments.

[end-fall]

An extended metaphor for why I can't talk sometimes.

Imagine there is a road between my brain and my mouth and words are the cars on the road. Most days things run smoothly, there isn't much traffic and you can get where you need to go just fine. Some days the road is closed and no one is allowed on the road, maybe there was a crash or something, but you can't use the road right now. Somedays there is construction, or traffic is really bad. Sure you could go on the road, but getting anywhere is more trouble than it's worth and honestly it's just easier to stay home and not go on the road. These are the days where technically I could talk, but it's really hard and honestly I'd rather not.

[hopephd]

Seizure First Aid. 

Learn it. Share it. Know it. Use it. 

[king-in-yellow]

100% correct medical information on tumblr for once; also consider calling 911 if you don’t know how often the person has seizures and ESPECIALLY if the seizure has lasted 5 minutes or more (which is why the watch is critical)

[lukesvalentine-blog1]

I have epilepsy so making sure the word is out on how to help people who do have seizures means a lot to me.

[gee-whatsgoingonhere]

One of my best friends from high school/secondary school had epilepsy and on two occasions she had epileptic fits. Thankfully her mum had told me what to do, call her, time the seizure, make sure she was in a safe space until the seizure ended and reassure her when it ended. I have no idea how it would’ve gone if her mum hadn’t taken the time to teach me and help me understand and especially when I was younger. Please learn it, it’s so important.

[spooniealyx]

I often forget people don't grow up knowing this stuff. One of my sisters is epileptic, so these were drilled into me at a young age.

Even if you don't know someone with epilepsy, learn these things, please. You never know when you might need it.