#spoonie probz

[sunnysk1nny]

Just realised when I get to the stage when you can see my spine, people will see how messed up my spine is from my spine disease 😅😅😅😅😅😅😅😅 talk about spooniespo! 🥄

[chronic-this]

What I Grieve Because of my Chronic Illnesses: A Non-Exhaustive List (that only scratches the surface)

*All the opportunities that I could have had

*A future I thought would be possible

*My career that I had only just began

*My friends and family, who walked away, as I slowly faded into the walls and sheets of my bed, while chronic illness stole my ability to be the person that they expected me to still be.

*My independence and self-reliance

*My pride

*My passions

*Who I was

*My potential

*My purpose

*My Hope

[thelastperformer]

My fingers hurt so much lately and it is making so much of my life hard

[thisisthedungeonthatneverends]

You're telling me there are people who AREN'T in near-constant pain? That people can go multiple days, even WEEKS without being in ANY pain? Sounds fake but ok.

[blackbird-brewster]

Real talk: Being nonbinary and/or trans masc and having debilitating endometriosis is fuckin awful. The disease is aggressive, incurable and leaves me unable to work, think or exist outside of the house and on top of that I'm dealing with dysphoria and alienation because every support group/site and every endo blogger is like 'LADIES!' 'WOMEN!!' 🙄🙄🙄🙄

[spoons-on-empty]

Conversation with my spanish professor

Me: Can you tell me if this vocab list i found online is accurate? I'm trying to learn some extra words to use

Him: Hmmmmm... well these are all medical terms. You should focus on words you use every day

Me: right!

Him: I mean honestly how often would you even use these? Almost never im sure.

Me: *sighs in chronic illness*

[lifewithchronicpain-original]

When you were a young child did you know what you wanted to be when you grew up? An often asked question, brimming with hope and the potential young life brings. It’s certainly not wrong to ask but for spoonies this can speak to a deep and painful loss.

I wanted to be a veterinarian, although my adult self would be very happy with working with animals especially in a rescue capacity. I never worked forward that goes, live take its twists and turns I ended up going to college thinking I might pursue oceanography. I didn’t get far for pure financial reasons.

Eventually I got a job working data entry for the city and I got the option to take two classes at my old college per semester. I decided to reignite my oceanography dream. Unfortunately I was already dealing with health issues and I was unable to continue program for mental reasons and lack of required courses availae after work anyway.

I was a really good student, one of those adhd kids who excelled in structure of schools. I still did fine in the college structure but I was dealing with many painful and anxiety issues, and running out of money, that college became impossible. My family wasn’t college oriented but I always always thought I would go. I love science, how else would I do what I loved?

My illnesses progressed to the point that I had to leave my job. My days are a daily battle against pain, boredom, and my own excecutive dysfunction. I’m slowly but surely trying to reorient myself into a job with animals. I have a plan and hope for success.

Still it doesn’t change the future I lost. I watch documentary about recent scientific discoveries and wonder if things were different if I could have been one of those scientists. I had a silly notion I could be become an oceanographer and help the whales, but now I’ll be lucky to be able to help the kitties, just as important an effort, tho. I mean more if I can get into the work.

There’s it’s no othe way to say it’s okay I grieve for what might have been. To be angry at all these life setbacks that make your dream impossible. As long as you’re still here, you can dream again.

[lgthatawkwardgamer]

😭

I just saw a Neurologist today who told me I didn't have MS, which was ALREADY confirmed by the MS Specialist I saw the beginning of this month. I also told him most of the testing he wanted performed had been done before. His conclusion was that I was perfectly healthy, but have depression and anxiety and that he could prescribe me medication to make me quote-unquote, feel good 😒

I could have told him I have anxiety, but most of it is due to PTSD from the symptoms I've been having for over the course of a year, because I can't get a proper diagnosis. At this point, I honestly feel like I'm going crazy and am losing all hope in doctors. I'm going to continue my vegetarian diet and doing yoga. I would be appreciative if anyone can give me any kind of insight, suggestions, or just help me feel like I'm not alone in this fight. I feel like no one understands what I'm going through.

I have had:

Random shooting pains (hasn't happened in a while)

memory problems (forgetting things, trouble finding words for things, and often use the wrong term for things even though I'm thinking the right one)

Numbness and tingling in legs (this has stopped since last November)

Burning in feet (extremely rare)

Leg jerks (I think maybe myoclonic jerks, only in left leg)

Pain in muscles and joints (I think this could possibly be restless leg syndrome)

Dysphonia (very rare)

Heat intolerance

Working out makes leg weakness worse

Occasional headaches

Eye pain (occasional)

Fatigue (random, and happens more when overheated)

Leg weakness (more in left leg, and has stopped since changing to vegetarian diet and doing yoga)

fasciculation (rare)

Ibs (I believe because I've never had stomach issues before)

Those are the symptoms I can think off the top of my head. My previous doctors said I could have conversion disorder, but I have found that's an outdated term and it is now known as Functional Neurological Disorder. But my current doctor just said I was perfectly healthy and blamed my symptoms on depression and anxiety after seeing me for all of four minutes each visit. He's seen me twice.

The treatment of doctors bother me more than the actual symptoms, and at this point, I'm at a loss on what to do. I went to the ER Sunday night because some symptoms came out of nowhere and scared me because I had a sharp pain in my left side that made me double over, and my leg started to jerk excessively. They ran a toxicology test for illegal drugs without my consent. I guess because my left leg was twitching, even though I told them the only drug I've ever tried is marijuana and rarely use it because I don't like the way it makes me feel. Btw, all the tests came back negative. They gave me Ativan because they said it would help me relax and stop the leg jerks, it helped my anxiety, but the leg jerks continued. They didn't tell me what drug they were giving me before or what the side effects could possibly be until I asked them. I felt like I wasn't even a person and did not like the way I was being treated.

[mojean13]

So I started aimovig for my migraines the other day. That night I ended up sore and tired. The next day I had a pretty decent migraine that lasted 23 hours. One of my longest. And now I'm just so fuzzy brained. My brain fog is really really bad. It almost feels like I'm trying to disassociate.

[the-fault-in-our-guts]

Things that suck about being underweight #1

My itty bitty subQ infusion needles hurt like a bitch due to my lack of proper leg fat

[crazywritergurl]

Falls asleep after dinner now my brain feels the way kitty looks in this photo. . .

[personallyyoursrobyn]

Does anyone sometimes wonder if they were misdiagnosed because it was easier just to give you this diagnosis than to find out what the problem really is?

I feel like it's easier for my doctor to have thrown m.e. at me than test for anything else that it could be, idk maybe I keep hoping it's something they actually have a cause for or can actually see & prove in tests.

I just wonder if they'll finally find the test for m.e. & it'll turn out it was something else all along, that they could have fixed.

[spoonieofmayo]

List of things I have to think about that able people don’t:

When they can eat in the morning (I have to wait for a specific time after taking my meds)

Can I manage a shower!? 

Walking up stairs, oh god the stairs 

Leaving the house to go to the shop around the corner

"If I meet a friend today, will I be okay for the thing I have to do in two days time"

Simply being able to roll over in bed

Being able to put together a basic meal (including "easy" things like sandwiches)

Having to have emergency food for when you cannot make it to the kitchen

Hope can I escape this mind-numbing boredom without moving?

I have 4 days to finish this essay, if I have a crash or a flare what can I do?

How can I relieve the neck and back ache I have from always lying down while continuing to lie down

Here's just a short list of things, add your own! 

[helpidonthaveanyideas]

I am on perscription grade ibuprofen and still in "I cant move" level of pain

Send help

[thisisthedungeonthatneverends]

I would pay so much money for a conceal carry back brace. Do they even make those? My wrap-around holster braces somewhat, but not very well and wearing it with my holster is too bulky, plus I wear the holster to low anyway. So all this means I can't carry on flareup days. Y' know...the times I'm most vulnerable.

[thelastperformer]

Ive spent all day in bed cause sitting anywhere else hurts literally even just sitting up takes so much energy