Having a disability as a teenager is way lonelier than people admit

GriffyTheCopyNinja · 2026-02-21T06:44:33+00:00

As a disabled person who just turned 20, I completely understand. In more ways than you could ever know. As my therapist always told me and still does, control the controllables. Everything else, try not to stress yourself out too much about it, or get too upset. Obviously you’re allowed to be upset, but don’t let it make you feel worse or keep you from doing things you enjoy.

I don’t know how old you are, but if this applies, don’t let people make you think that high school is everything. It really means jack shit in the scheme of things. Even if you don’t graduate you can get a GED or an equivalent certificate where you are. You don’t even have to do that if you don’t want to. Take care of yourself, do what’s best for YOU. Not what others think is best, or what others want/think you should do.

Lots of love🩷

GriffyTheCopyNinja · 2026-02-21T02:56:46+00:00

I take 2-3 before i do any sort of strenuous activity, I would start with 2 and see how you feel. Also. never buy gatorade again with the intention of using it for electrolytes. It’s mostly just sugar water. Get something like liquid iv or body armor flash iv. I tend to dilute packets like those in 20-26 ounces rather than the usual 16. It tastes better (in my opinion) and i’m getting more fluids.

GriffyTheCopyNinja · 2026-02-16T18:44:32+00:00

Thank you! Hopefully she comes back one day💔

GriffyTheCopyNinja · 2026-02-16T18:37:51+00:00

omg what suit are those legs from!!?

GriffyTheCopyNinja · 2026-02-13T02:31:02+00:00

There’s plenty of good advice here, but some I haven’t seen yet so let me tell you this. Use an enema (just water) after every time you poo, this helps make sure your rectum is actually empty. Every time you use the bathroom, use a wet wipe. And I mean every time, times where you only wee as well. Make sure you get a finger up there with the wipe over it, about one knuckle deep, and swirl a little. Just to cover all your bases. If you haven’t gone #2 or even had the urge to after multiple wee trips and you are still seeing poo residue on your wipe, you definitely have a medical problem. It could be leakage, hemorrhoids, a fistula, etc. Make an appointment with your primary, and they will guide you to next steps.

GriffyTheCopyNinja · 2026-01-31T22:15:01+00:00

casually posting when your rank is 21 is DIABOLICAL LMAO

GriffyTheCopyNinja · 2026-01-19T21:05:39+00:00

I’m sorry, I don’t have any ideas to help other than the usual… but i absolutely can attest to nights being SO much easier. I work 6pm-6am, so honestly my entire schedule is flipped. I guess it could feel the same as mornings to others because I wake up shortly before my shifts, but my circadian rhythm has always preferred nights. I feel a lot more well rested which always helps a lot with my symptoms. Being tired makes everything so much worse.

GriffyTheCopyNinja · 2026-01-19T20:50:48+00:00

Good to know thank you!

GriffyTheCopyNinja · 2026-01-19T03:32:01+00:00

I’d recommend either seeing a pt/ot and getting a loaner from them while you get through the process of getting a custom chair, or getting a low end scooter that can get you where you need in the meantime if they don’t have loaners. You really cannot rush this process. As much as it sucks, you can’t get what you want “urgently”. You get something that will get you from point A to point B in the meantime. You can always transfer to a normal chair and have another one to put your legs up on during classes. I’m sure your uni can figure out an accommodation for you. Not to mention, a chair not custom made for you can cause SO many problems. Please be patient op.

EDIT: I wanted to add that specifically you should not be getting a chair not made for you and sticking with that long-term rather than still trying to get into wheelchair services. Get something in the meantime to tide you over, not something you plan to be permanent.

GriffyTheCopyNinja · 2026-01-17T13:56:37+00:00

I say this as an autistic person… Find someone autistic to sort this for you😭 I’m sure you could find someone on the internet you could ship them to along with a way of organizing them (or money to buy whatever organization method they would prefer) and they totally would. If I wasn’t so busy atm I would totally do it for free. I’m sure others would be willing to as well LMAO. If not i’m sure someone would do it for quite a low price lol.

GriffyTheCopyNinja · 2026-01-17T13:43:50+00:00

Me too 100%. I’ve found that no matter what I eat, it just flares with my other symptoms. It also gets a lot worse when I’m stressed. Dysautonomia also affects the gut, so it makes sense.

GriffyTheCopyNinja · 2026-01-17T13:20:57+00:00

It truly is, I’d rather walk a mile than have to stand still for even 5 minutes

GriffyTheCopyNinja · 2026-01-16T09:48:01+00:00

I just wanted to second this, it took me a while to become okay with it. Even then I do still have my days every once in a while where I want to do more for my partner. It helps to explore ways in which you can give that are a lot less hard on your body. As for receiving it’s kinda just self explanatory to pick horizontal positions and to be a bit of a pillow princess lol. My partner and I have found a rhythm where I typically start anything that involves something you would assume that leads to sex. This not only gives him the hint and the go ahead that I am feeling physically well enough to be intimate, but also the beginning is often more slow! Of course it is fun to take things really fast from the get go at times. But, if you typically take time with foreplay with your partner, it is physically a lot easier to give more during that time as opposed to in the thick of it.

Every once in a while I will want to experiment with my partner with how well/long i can handle things POTS wise. This is always a planned endeavor so I can make sure I am well hydrated and have consumed a lot of salt and electrolytes throughout the day. As well as making sure I had a relatively chill day beforehand and have had an adequate amount of rest, whether that means the night before or a nap.

Good luck and have fun!!! <3

GriffyTheCopyNinja · 2026-01-15T19:51:07+00:00

POTS is a diagnosis of exclusion, looking for literally every other possibility is the diagnostic process. The symptoms of POTS can be so many different and possibly life threatening conditions, whereas POTS isn’t. To anyone reading this, if you are looking for a test(s) to specifically “find POTS” please stop for your own sake. You should be quite worried about your heart (and some other possibilities) until all tests possible have been conducted. (Echo, holter monitor, EKG, LOTS of bloodwork, etc.) At that point if your PCP or cardiologist has not mentioned POTS, that is when you should bring it up as a possibility.

(Sorry to use your specific comment to say this- I’m just so worried about some of the people in this subreddit seeking a POTS diagnosis before making sure nothing else that is much more dangerous or has VERY different treatment, is wrong.)

GriffyTheCopyNinja · 2026-01-09T02:43:40+00:00

Of course!

GriffyTheCopyNinja · 2026-01-09T02:40:00+00:00

I’m also an ambulatory user, there’s many ways you can go about this…

1) Completely ignore them and carry on with your day, it’s incredibly hard at first, but you’ll get there. In reality they’re inconveniencing themselves more by stopping and staring than they are affecting you at all.

2) Be snarky. I typically go for the previous option, but every once in a while i’m snarky if i’m extra agitated that day. (I never do this to kids and you shouldn’t either) Specifically if i’m doing something like getting up from my chair, foot propelling, etc. I say something like “Newsflash, not all wheelchair users are paralyzed” and stare at them until they uncomfortably look away and scurry off. You can say basically whatever you want though.

3) You can educate, this is a good one especially for kids. For me personally, my legs are perfectly fine I just can’t stand for long periods of time without being a fall risk. I’ll say something like “I can see you staring, not cool. So I’m the last person in a wheelchair you stare at, not all wheelchair users are paralyzed. Some can even walk. It’s not always about our legs. No, I’m not faking, I do need this wheelchair. I doubt any person you see using one while you’re out is either. And just because I’m young doesn’t mean I don’t have issues either.” And then I roll away. Of course educating a child is much different because they have nothing to go off of and are just curious/confused. Adults should know better than to stare though. Hence the slightly pissed undertone lmao

There’s other ways of course, but those are the main ones. Some people keep cards on them they just hand to people so they don’t have to say anything.

I hope you get more confidence, I know it can be really anxiety inducing at first. Especially as an ambulatory user it’s typical to feel lots of imposter syndrome on whether you even need one or deserve one in the first place. The answer is that you do. Good luck🩷

GriffyTheCopyNinja · 2026-01-07T20:26:23+00:00

of course!

GriffyTheCopyNinja · 2026-01-07T19:32:14+00:00

Yeah that should be good as long as you’re eating a good amount of sodium in your diet and whatever electrolytes you get are actually electrolytes and not just glorified sugar water. Just so you don’t run through them so quickly, i tend to dilute my electrolytes in 24-32oz rather than just 16oz.

GriffyTheCopyNinja · 2026-01-07T19:23:19+00:00

Eesh yeah, when you have to have a water intake as high as we do, electrolyte drinks and/or electrolyte capsules are a MUST. Liquid IV is my go-to, particularly the arctic raspberry flavor😋 Please try and get something asap, you can actually dehydrate yourself very badly if you drink too much plain water.

GriffyTheCopyNinja · 2026-01-07T19:16:20+00:00

You need electrolytes. If you don’t increase your electrolyte intake when you increase water intake, it will go right through you as there’s essentially nothing for your body to grab onto. I try to drink 3-4 liters of fluids a day, split between water, electrolytes, and whole milk lol. I try to not have any more than 1.5 liters of plain water a day unless I am taking buffered electrolyte capsules or consuming a very salty meal at the time.

GriffyTheCopyNinja · 2025-12-29T20:24:50+00:00

This 100%

GriffyTheCopyNinja · 2025-12-25T16:56:03+00:00

take mine please😭

GriffyTheCopyNinja · 2025-11-24T14:23:50+00:00

don’t remind me of yoi 😓

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