u/numberoneblurfan

I know I just posted about not remembering to eat, but I'm going to leave this here too. Oh my god it is SO FRUSTRATING having stuff just pop up all the time. I am one of the lucky ones. I got diagnostics with Mayo Clinic (POTS, hEDS, MCAS, Fibro, and some random auto-immune diseases... and more!), their treatment has gotten me able to do school, live my life most unassisted, but in order to do that literally everything I do has to be planned out. Everything requires constant full awareness, and the slightest bit of overexertion and you're just mega fucked. Anyone else wear almost exclusively shorts and t-shirts? For me, if I get even a little bit hot I break out into rashes and end up flaring. The heat is like incredibly uncomfortable too omg. I don't flare very often, but as a literal teenager sometimes I am impulsive and selfish and over-exert myself. People don't understand that when you FLARE it's not just "ouch my pain is a bit worse" it's "I feel like satan has butt-fucked me multiple times and when he pulled out my soul went with him". It's not like take a sick day, do computer work for a sec, no I ROT in bed for 4 days, having to have someone take care of me.

And then the randomness of symptoms. Random blurry vision, hair loss, tinnitus, bumping into shit, weird poop?, rashes, dizziness... like there are obviously consistent symptoms like the fatigue, the pain, the brain fog, the inability to stand for long periods of time, but the randomness also like prevents me from getting REAL diagnosis for other health issues. I had an infection for 4 months and I just literally didn't realize because IDK like my symptoms are so weird with everything, I just didn't think about it.

I can also just notice my cognitive decline. It is so depressing watching yourself make typos, forget how to spell words, struggle to do basic mental math, as someone who used to be a top student. Chronic Illness robbed me of my chance to go to the colleges I wanted to go to. It has robbed me from hobbies, experiences, relationships... AND IM ONE OF THE LUCKY ONES. I am fully aware that my life is way easier than a LOT of you. I mean in general I am pretty happy. I have achieved so many of my goals. It is just so hard to accept that I will never ever have what I had before, and that doctors probably won't fully understand what is going on with me (and ya'll) for another 80 years.

For those of you struggling, the best thing you can do for yourself is fortify yourself as much as you can mentally. Shit really fucking sucks, but I don't feel hopeless because the years of therapy and DBT I have done. Having a shitty childhood put me ahead in something! Also it is really, really, painful at first, but trying to get back into exercise and physical activity (but also non-screen based hobbies like anything artistic) really helps. LIKE REALLY helps. I was pretty much a zombie for a year after the crappy operation I got triggered the onset of fibro symptoms, The Mayo Clinic brought me out by helping me get back into physical activity.

Finding stuff I am passionate about helped me distract myself from the pain. I hope all of you have purpose in your life, and if you do not, I truly hope you find it. There is a reason that literally EVERYONE you meet (that aren't losers) tell you that you're strong.

Hi,
I 18F here. I recently moved out of my parent's home because of unsafe living conditions (my dad lol), my mom pays for my apartment so financially I am fine (my mom is the GOAT i love her), but I keep forgetting to take care of myself. I have all sorts of issues with my health, and if you're like me you kinda get used to waking up and having some random ass symptom. Hair falling out, tinnitus, weird stomach cramps, an extra bit of stomach pain, weird bruising, stupid freaking sweaty palms to the point of it DRIPPING like wtf. Stuff just kinda happens and I move on. Anyways, I don't know if it is because I have so many other weird sensations and aches in my body or if my completely fucked nervous system just doesn't process it anymore but I do not feel the sensation of hunger or thirst. I was already pretty bad about taking my meds... which i'm sure going 4 days on 3 days off 5 days on 2 days off is doing WONDERS for my body... but forgetting to drink is like actually causing me more severe issues. I keep accidentally mistaking the extreme fatigue that happens with lack of nutrients/water with flares. One time I got so freaked out about why I was having extreme fatigue, because I have gotten to the point where I can tell what causes my flares like every time, and so I assumed I wasn't ACTUALLY having a flare and then over exerted myself and then got a flare. Most food isn't appetizing and when I do eat I have to eat really really slow (my friends shit on me for it), and I can't really eat much. What do I do? It's really frustrating.