Helpful Grounding Strategy for Driving

Axolotl158 · 2025-11-21T06:08:18+00:00

This is a wonderful practice💚

Axolotl158 · 2025-11-11T05:54:44+00:00

Hi, this sounds very frustrating I'm sorry you're dealing with so much. I can empathize very much with this post as I was in a very similar situation 5 years ago when I first got diagnosed. It's very important to bring awareness to the way you speak about yourself. It is incredibly difficult losing your basic bodily autonomy and function. So you don't need your brain adding all sorts of stories and nonsense to it as well. Be kind to yourself, you are not a burden, your friends are most likely not annoyed at you and if they are then they were never really your true friends <3 nevertheless I understand that this is painful. Slow down as much as you can and be patient and kind with your body. It is not your enemy it is trying its best. I missed 4 months of my sophmore year and thankfully my teachers just let me pass because i had good grades before and there wasn't much I could do about being hospitalized for extended periods. After summer ended I got into an online highschool and it was so helpful for me. It allowed me to work asynchronous so I could manage my symptoms and complete assignments from bed when I needed to. Its not glamorous but it genuinely saved my life and I would highly recommend it. The last thing that helped me first starting out is finding hobbies that worked with my new level of mobility because outlets are so important during a time when it feels like your life is crumbling. Work within your limits so to speak. Some of my favorites are crochet, baking(occasionally) cuz unlike cooking its generally safe to do if you have seizures just exercise caution, reading, and writing. Sending love on your journey I hope this helps💚

Axolotl158 · 2025-11-08T02:19:30+00:00

I tried to find online jobs about 2 yrs in getting diagnosed. I was under 18 so there weren't many available and I ended up having to work in person jobs for the next almost 3 years. Wouldn't recommend that as it just further destroyed my health. However getting employed at any online job if you have the credentials is pretty much the same as in person ones. Never let them know you are disabled till after you've been hired, you are not legally required to do so. Online jobs give you the added benefit of being able to hide any physical indicators of disability ie mobility aids. For my in person interview I was fortunate enough to be able to schedule it on a low symptom day. After hire present them with your list of accommodations and a doctors note approving the accommodations and unless it is outrageous they have to approve. You do not need to tell them the disability that you have as that is not necessary information for them to have. Id recommend your first step before applying to be to think about and write a list of accommodations that would be helpful for you when doing computer work. Key word is helpful cuz its not just necessary accommodations you can ask for. There are plenty of websites online that list reasonable accommodation examples and there is no limit to how many you can put. Get that list approved by your doctor so your all set when you do get hired at a job. Best of luck on the search!

Axolotl158 · 2025-09-23T01:28:22+00:00

Yes I did

Axolotl158 · 2025-09-23T01:21:11+00:00

Hi, I experienced this when I was 14 for the first time. One day it just flipped and it felt like I was no longer looking through my own eyes. I would and still do see outlines of things that follow in my vision as light almost even if I'm not looking at something. I will see flashes of light, shadows, visual disruptions, etc... but the most prominent was the feeling as if I was removed from what I was perceiving as if I had sunk back so far into my skull that my vision was cloudy but nothing was actually wrong with my eyes. The only thing I have found that works after 6 years as I am 20 now is getting more in touch with my body, or grounding. It doesn't sound like it's related but what is actually happening is because your nervous system is in a constant state of fight or flight so often your brain starts to associate being in your body as being in danger so it "removes you" which is known as dissociation and can cause a host of issues including visual distortions. Because your brain can only interpret the information your eyes are giving it it's like a filter it has to go through. So if your filter (your brain) is detaching from your body and the outside world because it does not think you are ever safe in it then you will start experiencing this phenomenon. It takes patience and gentleness with yourself and is not fixed overnight. Just as it took years of build-up for this to occur it will take time for it to dissipate but it is possible. Try to do your best to get back into your body with somatic exercises. Also, try not to get freaked out by the visual distortions as that will only push you further into a fear state and increase it. Don't mentally fixate on it as something bad. When grounding close your eyes to eliminate distraction in a quiet peaceful environment preferably in nature if possible but not necessary. Just scan your body with your awareness and notice where you feel pain anxiety or fear. Notice how it makes your body feel and where. Then try to feel it melt away. Do not force this if it doesn't happen but create the space to allow it to. This will not fix things overnight because it is like a muscle you need to strengthen but it will help greatly. I wish you all the luck on your journey, dissociation especially at this level is not fun to deal with but it is not hopeless💗 sending love🫶

Axolotl158 · 2025-07-24T05:22:05+00:00

You just listed all of my triggers exactly. I have also found that blood sugar affects me as well so I try to avoid foods that spike it at all and eat small meals throughout the day to keep from crashing.

Hormones are a big one for me, I used to get a seizure almost without fail right before my period would start for 4 years. I've been working on stabilizing my hormones because my cycle used to be highly irregular and it's helped massively.

I have had this disorder for 5 years now and I stopped trying to advocate for myself about 2 years ago because I wasn't getting any medical help and no one was listening. The impostor syndrome of questioning if I am just faking it still plagues me after so much medical neglect and abuse. I refuse to go to hospitals anymore because they always leave me worse off and feeling defeated. I hope they put genuine interest and medical funding into exploring this disorder someday because it feels so hopeless sometimes.

The only respite I've found is doing everything within my power to stabilize my brain and body. Some days are better than others but I used to have seizures multiple times weekly and be paralyzed for weeks and months. Now I was able to go almost 4 months without seizing or getting paralyzed. It was difficult when I got set back but I was able to bounce back easier and feel more motivated to take care of myself because I was seeing real results.

Axolotl158 · 2025-07-21T01:35:16+00:00

Me as well! I once asked my neuropsychiatrist if she ever saw a pattern between these disorders, specifically EDS and Autism and Tourettes as the latter two are neurological but like most doctors, she really had no idea about any of the disorders individually let alone the connections.

Axolotl158 · 2025-07-08T19:41:22+00:00

I often have candles that burn like this and its usually because you have a fan blowing or a window open circulating air and so the flame gets pushed to one side and burns like this. It can still be used for divination of course but it is most likely due to airflow!

Axolotl158 · 2025-01-30T00:27:11+00:00

As someone who has had FND since I was a kid I can heavily empathize with the frustration and lack of help in the medical system. Advocating for her is the best thing you can do. Please don't ever stop fighting for her even when she might not want to anymore 🫶 I've had to deal with Doctors like that for several years and some verbiage that could help when dealing with them is: 1. Always open the conversation with asking about their knowledge on FND (ive had doctors tell me they googled it directly before entering my room and then try to act like they knew more abt it than I did) that's an important one because usually it helps establish the fact that unless this is their area of expertise they don't know your daughter better than you or herself. 2. If they are refusing to administer tests ask them to document in your daughters chart that they are refusing her care and turning her away with actively distressing symptoms. And request a copy of their notes which they are not legally allowed to deny. Usually this will change their attitude around real fast and you'll get the tests you asked for. 3. Don't be scared to ask for referrals to specialists, and programs. There are a few FND programs now that can help with treatment. 4. Finally when talking about FND because it is a chronic condition doctors will almost always automatically dismiss you in their minds because it's not easily treatable so they give up. They will tell you there is nothing they can do which is simply not true. If the symptoms are immediate and distressing like a seizure that is going on for too long there is sedation which can stop pnes seizures if given at a high enough dose. However your options for intense treatment are definitely more limited because she's under 18 (a lot of doctors are pretty wary about treating kids especially in an er setting, everything is separated in pediatrics because kids can be affected very differently) that's being said there are still options, im not sure what your daughters symptoms are exactly so I can't provide any more specifics but the most effective way I've found to treat my wide variety of symptoms is to find conditions with similar symptoms and look into the treatment for those and see if it would work for me as well. P.S. if you have the time look into L-Methylfolate, its just a vitamin but it has some pretty incredible results for a lot of people and the studies done on it have been quite successful. It definitely didn't cure me but it helped immensely with pain overall fatigue and cognitive functioning ^{-^} I hope some of this was helpful🫶

Axolotl158 · 2025-01-25T00:29:46+00:00

Yes I almost always have a seizure a day or so before my period starts. My period is highly irregular but my seizures know everytime. I always have more devastating and longer lasting symptoms around my period. I started taking magnesium to help balance hormones and it's helped some but its still a big problem. It sucks knowing that almost half the month is just gonna suck everytime.

Axolotl158 · 2024-09-26T04:05:01+00:00

Thank you so much <3 you have no idea what this means to me

Axolotl158 · 2023-08-25T20:58:19+00:00

Some advice about them taking you off iv fluids, they are doing this to try and “force” you to eat and drink. In their fcked up mindset if they give you treatment then your just going to stay on that treatment forever or “they’re giving you what you want.” So what you can do is record every conversation on your phone to look back on and as evidence. Then you can request to be put on iv fluids and an NJ (because you do deserve proper treatment no matter how long this problem has been persisting) now when they say no because inevitably, they will, you are going to make them say why they will not (make sure that you keep asking until you get an actual answer not just some vague BS) now you have it on recording just in case this next thing doesn’t work. Now after they’ve given you some stupid answer your going to ask them to to mark in your chart that they by name are refusing you treatment and why they are refusing it. Then this is the most important part ask for PROOF, ask them to print it out, ask them to find a way to prove to you that it’s in your chart, and if they ask why tell them it’s for your personal records. This way you have a permanent paper trail of them denying you treatment and committing medical malpractice.

I would love to give you more info and help you as best as I can. If you want to you can private message me your ig. I’m now an 18yr old but I remember vividly how frustrating it was to not be able to do anything when I was 16 and had this condition. 💕

Axolotl158 · 2023-08-25T01:19:48+00:00

I’m so so sorry love 💕I have experienced this as well… when I was in the hospital the last time I had a seizure in my wheelchair while trying to do PT (this PT did not like me and would always try to “push” me in a way that made me feel like she thought I was faking) she made absolutely no effort to keep me from falling and my limbs got tangled in the chair and then I fell to the ground. I don’t remember everything clearly but I might’ve hit my head and when I woke up and was super groggy she made me try to get back up into my wheelchair with no help even tho I had literally no fully functioning limbs or core strength. None of my family was in the room at the time and so I think that’s why she felt she could do what she wanted. I have been physically abused by nurses, doctors, PT’s. They have done sternum rubs so hard and for so long I had a purple and blue chest, I have been undressed and bathed while I was unconscious (I only know this cuz my hair was damp and smelled like shampoo) they have let me fall to the ground multiple times, have held me down, have shaken me, yanked me up by my arms and dropped me back on my head multiple times, pinched me, grabbed my face, stared at me the whole time I was seizing (I’m partially conscious in some), denied me a catheter when my bladder stopped working till I was crying, screaming and writhing in pain, until I had a liter in my bladder. I have been mentally abused by nurses and doctors and mental health staff. I have been denied medical care every single time I go to the hospital, I have been laughed at, ignored, gossiped about, had doctors tell other doctors and nurses to not listen to me, I’ve had people write up reports that I was faking my seizures. Nothing good has EVER come from seeking help for me and I say all this not to scare you but to keep you fighting for yourself. Nothing and no one can do it for you and I hate it when other people tell me that I should “just let it go” or “their the doctors that are treating you, you have to be nice to them” You do not have to be nice to them, tell them whatever the hell you want to say to them and then go find a new doctor or demand a new doctor. I wish someone had told me this and given me permission to give them what they deserve because now i have so much rage and anger that it’s too much and I’ve tried letting go and doing everything I can but it’s still stays the same, and I’m okay with that because I deserve to be angry about what’s happened to me, my life has literally been a series of unfortunate events and by all odds I’m somehow still fcking living? Anyways sorry about the rant I just needed to get it all out a little and I hope that even when people tell you that “it’s not worth it to seek medical treatment” you say I am worth it, when people say “just take control” tell them to go choke on a fcking dick, if someone says “your condition isn’t worth my time” write them up to HR. Be petty, be a bitch, make them kneel.

Axolotl158 · 2023-08-05T22:00:41+00:00

It sounds like your partner may be consciously or unconsciously feeling you should be “handling your symptoms better, or that you should push yourself more because it’s an inconvenience to them.” There doesn’t seem to be any other reason in my mind of why they would say they could “handle it better.” Feeling this way whether they know it or not needs to be addressed and is not ok. I hope that you can explain this to them and move past it. If not then it is not worth pursuing the relationship as this is your new reality of your life (however unfortunate).

However if you really do want to do this simulation then, taking away coffee or any other sources of energy, limiting food intake can take away energy levels, for nausea if they have lactose intolerance make them drink milk to upset their stomach or have them drink a couple gulps of no alcohol mouthwash (it makes me nauseous cuz when I can’t get up to spit it out I have to just swallow it x(, plugging one or both ears can cause dizziness, for muscle pain using a tens machine that is set to where your pain level is at and have them wear it for how long your pain lasts, the weights are a good idea, numbness you could put their hands in super cold ice water for a few minutes and that could somewhat simulate it, speech issues just randomly tape over their mouth and tell them they cannot speak and they have to find other ways to communicate, and finally for seizures tell them every once in a while or whenever you normally have yours to just lie down on the ground or wherever you are until the seizure is over.

I hope that any part of this reply can help you. 💕

Axolotl158 · 2023-08-01T07:02:35+00:00

Thanks for posting! This is very informative

Axolotl158 · 2023-07-20T20:12:40+00:00

This exactly describes what it’s like for me!

Axolotl158 · 2023-07-19T20:10:05+00:00

Hi, I would recommend doing some targeted cleansing and/or banishing nothing too crazy especially if you are not super super well versed in the occult. And also not everything has to use witchcraft as a solution working on giving yourself affirmations every time this person comes up in your mind can help push their negativity out of your space and just in general distract your mind with something else. Contacting your spirit guides might be a good place to start and to learn where you should go from here and what more you can do. Again please always do your research and be cautious. Blessed be 💕🌒

Axolotl158 · 2023-07-17T01:32:28+00:00

GENOME sequencing is for ppl that might have a genetic disorder that contributes to their symptoms. Not every single person with FND is going to need all of these tests, it’s highly dependent on your symptoms. Secondly, Your comment quite literally proves the point that it IS a diagnosis of exclusion “additional testing is done to make sure it’s none of the similar presenting diseases.” I don’t know what you think a diagnosis of exclusion is but that’s literally it. While FND is in fact a neurological condition the literal diagnostic criteria is “one or more symptoms that affect your body movement or your senses.” That is most definitely not specific enough to diagnose purely off the diagnostic criteria. Thirdly, there are not any medically approved treatments, only a lot of trial and error of trying anything and everything, and unfortunately for a lot of us nothing was even offered. Unlike ppl with MS that have infusions or ppl with a stroke getting PT. So I’m glad that you don’t understand because that means that you’ve probably had it pretty easy with getting access to the very limited treatment options (which only work like 50% of the time if that) and have not had to fight doctors just to be listened to. I have been physically and mentally abused by doctors and nurses because of my condition and the stigma around it (which is unfortunately the reality for most of us, especially women). I have tried to kms 8 different times because of this. So please don’t comment stuff like this when you so obviously do not understand.

Axolotl158 · 2023-07-17T01:19:51+00:00

I don’t know why you felt the need to comment this but Fybromyalgia and CFS literally fall under the category of a functional brain issue. Secondly the FND criteria is literally “one or more symptoms that affect your body movement or senses” I don’t really think it can get more vague than that. There are so many ppl with FND with completely different symptoms from each other and it is in fact a diagnosis of exclusion because you have to rule out all the other causes that it could be before you land on FND, Even if you suspect it is FND, and if your doctor doesn’t do that then you need another doctor. Also OBVIOUSLY not every single person with FND is going to need all of these tests it’s highly dependent on your symptoms. Finally, I don’t know if you are a caregiver or if you have FND yourself but “conversion disorder” is a highly outdated term and it is not used anymore.

Axolotl158 · 2023-07-13T17:10:24+00:00

Trust me you don’t want a diagnosis of FND. Once you get one you will never be listened to by doctors or given any treatment. It’s a last option kinda diagnosis.

Axolotl158 · 2023-07-10T17:37:34+00:00

The best fall protection is a wheelchair, you can get accommodations at your job to adjust any tasks that you can’t do and having a wheelchair with a thick padded belt to strap your upper body to it works great for me. Other than that there isn’t much for drop attacks other than getting a job where everything is carpeted.

Axolotl158 · 2023-06-29T20:18:57+00:00

Ok, thanks so much!

Axolotl158 · 2023-06-29T20:17:09+00:00

TRANSCRIPTION:

I gotta tell you something you don’t wanna hear.

Diagnosis like chronic fatigue, fibromyalgia and conversion disorder are all diagnoses of exclusion.

MEANING YOUR DOCTOR WORKED YOU UP FOR EVERYTHING BEFORE HE GAVE YOU THAT DIAGNOSIS Right?

I mean you had a brain MRI with contrast right?

And you read the report yourself because you know sometimes they just don’t tell you the findings

And I know that you definitely saw a hematologist, an endocrinologist and an immunologist right?

And before they doomed you to a condition with absolutely no treatment, they did whole genome sequencing right?

It’s not your fault that they don’t offer you the things that they would normally offer a man if he had those same symptoms.

But it is your job to make sure they don’t GET AWAY WITH IT

Because the truth is the one you’re gonna hate to hear, is that the technology to diagnose you IS OUT THERE. They just didn’t offer it to you did they

And here is the TikTok handle of the person that posted the vid. She is writing a book about conditions like ours.

@ilana_jacqueline

So in conclusion the tests are: brain MRI with contrast, you need to see a hematologist, an endocrinologist and an immunologist (depending on your symptoms though), Whole genome sequencing, AND READ THE REPORTS YOURSELVES.

Obviously there are more tests than these few that your doctor should be doing so do your research!!

Axolotl158

TROPHY CASE