Things I Sometimes Forget As A Chronically Ill Person

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[@StalkAlexHere]

I also forget that it’s not normal to casually mention your specialists or team of doctors when others are discussing light topics. For example, “what all did you do over spring break?” “Well, I saw my oncologist; that went well. He referred me to neurologist, which I’m super excited about....and I found a fabulous fabulous new allergist who agreed to let me try this med I’ve really been wanting to try...oh! And my cardiologist is sending me for further testing to get my diagnosis, finally!!” And then they just stand there like... 😳🤐 Which reminds me of another.... Normies don’t get excited about doctors appointments. 😂🤦🏻‍♀️

[@jessyhayward9544]

Alex Taylor Haha I know right! I’m in highschool (year nine) and it’s so relatable. My friends just ignore my chronic illness completely though. They call me lazy because all I can is walk in HPE and that causes me soooo much pain

[@jasonpiper609]

I know precisely what you mean. Been suffering since age 3. The thing about friends, family, etc, is that they literally don't understand because experience is the best teacher. I always tell my peeps "I'm so glad you don't understand what I'm going through. I hope you never do because you wouldn't last a week in my body." That's what ya say to really get the 'deer in the headlights' look out of 'em. But at the same time it makes 'em think about it more & opens their minds to how bogus/unsympathetic they've been & how lucky they are not to be suffering......

[@emilyvbr1878]

This is so me

[@AidanKedzierski]

I forget that most people don't need to use a heating pad every night and that most people procrastinate entirely because of mental reasons and not because their hands hurt a lot if they type too much.

[@moymoyni2]

chronic illness

[@chrishutchins1294]

Are used to type 120 words a minute - well I could type as fast as my uni professor could talk. I’m dictating this - need I say more! Have a good one.. PS: I’m trying to find a decent, decent quality heating pad in Australia - meanwhile I’m using the ones you heat up in the microwave, but that means I have to get up! To a non-chronically ill person that would just sound like I’m lazy as opposed to have to climb out of bed into the wheelchair get to the microwave blah blah blah and do the reverse... so electric heating pad would be so much easier.

[@mulliganstew72]

I wear a neck brace, heating pad nightly & have issues working for more than 5 mins on a computer. I cannot text much. Can you imagine how horrified people are when I want to CALL Them? Dating is another story...they all want to text. zzzzz

[@chrishutchins1294]

Yes I know - firstly I can’t get a good electric heating pad in Australia because don’t take this personally but the Americans are hogging them, (joke) well the good ones, especially the one I want that looks good on KZbin - because you know it’s not what you should do your research?)! Like obviously, I could buy one and use a power converter (for Australia 🇦🇺 - 240 volts) but with something like a heating pad, a bit dodgy... Plus I don’t even know if and how well it, might/would work! As far as for texting I’m okay if it’s a bit shorter than this message - Siri is doing all the work on this one, but I’ve an extra app that works with this - so this is a mouthful (as I need my phone/iPad whatever electronic device I’m using to do: voice = my voice to text, & then text to speech, as I’m legally blind and yes I certainly can’t trust Siri and even her little playmate that’s dictating this will happen if I don’t check there will be typos galore... What else was there because I can’t read what you wrote while In terms of dating: “ now I vaguely remember that, I think I have learned of it” what’s that again? Is it answer that question for the world... yeah, only leave the house for medical appointments, and I’m pretty much alone pretty much is pretty much completely! So you’re not alone in being alone.. I wear all different sorts of braces just because you know they match the wheelchair - not! Oh, yes I get so sick of the car accident question.. take care beautiful - did your next vid...

[@lyndathomasbryan2626]

Seriously i live with the heating pad. I love this.

[@AnnaMae41194]

girl I had 3 doctors appointments this week, my bf asked me why I was going so often now and I looked him dead in the eye and was like "Because I have a potentially fatal disease now... and dentist."

[@cliffpoff2457]

Been sick for 35 years. Just trying social media. Its nice not to feel alone. Thanks for humor and your hard work.

[@MandyMeehan]

So glad I found you. I have CFS/ME and fibromyalgia. I relate to so much of this.

[@dianneagain3830]

I cracked up when you got to the part about your doc being your BFF . My healthy friends are stunned that I call my docs by their first names and refer to appointments as having dates with them. I've known some of these guys for most of my life at this point of course I call them by their names and joke with them and stuff and when I go to the local ER because I fell or dropped something on my foot again the nurses know me .

[@MsMel-ic5eg]

Love your humor & blatant honesty- kinda a flip the script on the abled, which I’ve never even considered to do! As a Chronic illnessessss sufferer-I get it!

[@michelleallen2294]

You're bloody awesome! I searched for so long to find a channel about living with chronic illness, it takes courage, compassion and a lot of love to share like this, THANK YOU! I found nothing and tried to do it myself. ! I was just suggested to watch this video today after a really horrid experience in hospital. I've been trying to fiind out what's up with you, pray tell? I'm living with Endo and anorexia, love your truth lady!

[@michelleallen2294]

P.s. You look BLOODY GREAT. :)

[@powers_media]

when we forget our limits, it can be a real setback. often, by sheer will alone I will push myself well beyond my capabilities in the hopes that it will make me stronger. it rarely does. I just spend days barely functioning as a result. Most ables are baffled by this because pushing themselves physically actually does make them stronger.

[@kittyp5923]

I'm literally fighting to hold back tears! This is so relatible, and it's sad.

[@electrogeek77]

Sometimes I see someone walking without a mobility device, and I start feeling all discombobulated. I haven't gone anywhere in two years without my cane or rollator, so even though my husband and some of my friends don't use one, I'll still forget that most people don't use a mobility device.

[@Cy_Cyborg]

I'm not chronically ill but I am disabled. I once forgot I was an amputee (missing both my legs) and tried to get up off the couch and face-planted into the ground lol. also got detention at school once for 'inappropriate discussion in class' when we were looking at the particular illness I lost my legs to in science and during discussions I told the teacher what the disease ACTUALLY dose in detail- I got so used to explaining it on a regular basis it never even occurred to me that most other people would be uncomfortable with hearing the details lol

[@raggarbergman]

I can lmost see it in my head how a healthy person trying to be discret while asking for the bathroom and you tell her where they are in a very non discret way. :D

[@rubeusred4337]

I definitely know what you mean and I'm glad that they made those chronically ill communities. It's hard to interact with people that can't relate to someone with a sickness. Thank you this video made my night and you're so awesome! : )

[@kappanation]

Great video, so much good stuff!!! :) "Healthy Peepo" basically never have to take a break at the bottom/middle/top of a flight of stairs. Or think twice about walking any pace, sitting/standing for any length of time, etc. And even just walking slowly is strange enough that people will ask me if I'm OK or just tell me that I'm walking slowly, and I'm like "What? Oh. Yeah, I'm just walking." (You should have seen me hobbling around yesterday). Is the neck brace just to give your muscles a break, or do you have a spine/alignment issue? Does it help for sleeping too?

[@goldieblythe5184]

All these are so true. I have been going through this for years. But I'm just now new to the chronic illness communities.

[@mereani]

This is the first video I've watched of yours. So glad I've found your channel! I've had lupus for 13 years but never really engaged with the chronic illness community. Watching your videos, it's so nice to finally be able to see others who share the same experiences. Kinda wish I'd done this sooner. I know my teenage self wouldn't have felt so alone. Can't wait to watch the rest of your videos 💜

[@ConfusedGirlButSmartDude]

How have I only found your channel now? It's awesome!

[@SickAndTiredPublishing]

NoahLouiLife Thank you!

[@emilydana5021]

I really get all of these and really appreciated this video.

[@tinymintyrose]

I find going out for meals is the main time I remember I'm ill. I used to feel very out of place being the only one unable to eat, but over the years it's kinda become something to joke about! That being said, most of the points on this list are super relatable!

[@Katyayanibetha]

Thanks for the great video! I recently realized I have a real problem forgetting that life isn't supposed to be so hard & such a struggle, so I'll accept doing things that are actually torture, but I don't realize it, because I'm so used to feeling tortured... usually when it comes to making a living and ending up making myself worse from going out in the world too much. Currently in the midst of serious realizations and transitioning to working from home at this present time.

[@toryannasJMW]

The bodily functions bit is so true 😂😂😂😭I also forgot that I’m sick

[@genericamerican7574]

My friends kids like playing with my wheel chair, walker, cane, hot water bottles, stress toys.

[@MsMel-ic5eg]

*Drops things- we definitely relate!

[@rvnurse2b]

I forget that I might need a cane to get to the bathroom in the middle of the night. Last night I put it across my bedroom! I forget that I can't go foraging for mushrooms. Or go camping really, unless I borrow an RV. Even thenI might not he able to do all the work that camping involves.

[@SantoshaSpirit]

So relatable! 😂👍🏼

[@powers_media]

you're important to me! Your descriptions of the stuff we go through are so on point. Even the things that maybe you're not intentionally trying to show, like the rambling... the memory problems, the attitudes we must take sometimes to survive.. it's all so comforting in it's familiarity and you, myself and others like us know that's not weird. lol. it's like meeting someone who's cut from the same cloth. Hey! we're not alone. Thanks for putting this out there, I know it isn't easy to do (in several ways)

[@LymeStealsGodHeals]

Great video,and totally on point!

[@RippingStars]

You need more subs! You're channel is amazing and i love it!! And i have a SUPER dark sense of humor about being chronically ill and people get so un-comfortable and judge me like "Thats so rude why would you make fun of them" and i'm just like. I AM them.

[@SickAndTiredPublishing]

That's so kind of you to say! Thank you!

[@nicolabannister3582]

First video of yours I've seen and I LOVE IT. Totally agree with all of these. Apart from the forgetting I'm sick. My body has a habit of reminding me all the time 🙄😂 (I have AS and an as yet undiagnosed gastro problem)

[@rheagalarneau1366]

Even my own parents don’t understand that there are foods that I can’t eat.

[@jasonpiper609]

I totally understand and empathize with you about the neck brace. I get laughed at sometimes out in public. After a thrice, untreated, broken neck, I've had my neck brace on pretty much 24/7 for 5 years now. I've been a chronic pain sufferer for 41 years and have had 4 (technically 5) NDE's. Love your beauty, humor, and spirit 0=) 0=)

[@User-nj4hr]

OMG long story short, I ended up telling my English class I had a brain tumor and I started laughing. They all seemed CLEARLY very uncomfortable, and I was confused but amused

[@rebeccamorrison1313]

These are ridiculously accurate

[@sebAO301]

Such a relatable video, I always forget that there are actual healthy people that exist lol

[@sincerelysarabeth1994]

You are completely amazing and you made me smile because I can relate to almost every one of these! Loved the video :)

[@Stress-relief-insights]

Hi there, I just came across your videos by accident... I'm not sure if Fibromyalgia is your primary health issue, but it sounds to me like you may have something else also. Possibly Ehlers Danlos Syndrome. I just wanted to mention this in case this info is helpful. I have a rare genetic connective tissue disease (Ehlers Danlos Syndrome) which effects all of my connective tissue, leading to very loose ligaments and joints causing dislocations immense pain/disability and multiple organ dysfunctions & constant joint bracing. I have personally lived with chronic pain and disability for 20 years & was only diagnosed about 6years ago. I know first hand the difficulties and challenges living in pain can bring. You may already be diagnosed with this, but I couldn't find that info & wanted to mention it just in case. Best of luck on your health journey. Warmly, Nicole from NZ

[@zeew.8137]

I get extremely irritated by doctor's and family and friends constantly pointing out that I don't follow the diet I should be. It's really hard in my financial and living situation to have any control over my diet. I know following a certain diet would vastly improve my quality of life. I want to change my eating habits but that's extremely hard for me right now for many reasons.

[@Sogonrei]

I got in a second car accident since 2013 which wasn't my fault on the way to work as,a Funeral Director on call and had herniated discs in spine and neck and shortly after couldn't work since June of 2013 I was so sad I miss it..I had to lift deceased and finally injured my back to point of no return on a call with faulty cot and morbidly obese person, and once again another car accident Sept 29, 2015, reinjured hiernated discs in back and new in neck, broke sternum (chestplate) ribs, which made my P.OTS come back or flare worse with a vengeance. I really think accidents or trauma can trigger it in people that have it or are disposed to it. I have been diagnosed with P.O.T.S. since 2000, at Mayo. I've passed out quite a bit in my life even growing up. It got to the point where I was breaking bones and getting concussions, so thats when a doctor referred me to Mayo Clinic. I still pass out and break bones, I have the type of .P.O.T.S, where my blood pressure drops, and heart races. Ive been so ill I cant stand for more than 10 minutes since last Halloween, when I had last concussion, and split head open, I kept passing out, until friends found me, and called ambulance. This sucks. I also get really bad staph infections from a c-diff infection I acquired I'm 2008, as an intern funeral director, my whole colon was inflamed, so I have a severely bad immune system- I lost 60 pounds. I've gotten cellulitis too, just had it last week hospitalized 5 days. It was surgery 102. Some were I& D's, some deep skin tissue biopsies, it's been hell. I'm sorry you suffer too and want to help if you have question regarding P.O.T.S.I hope I can help. 😊. I was too tired to type this whole story.

[@taylorandgraphite4772]

I’m 13 and on my bad days with ehlers danlos syndrome I use a crutch to get around. I’m constantly asked what happened to my leg and I awkwardly say “nothing I’m just sick”

[@bm3209]

me, in any public space at all: oh yea man good thing I got that K N E E F L U I D from my ARTHRITIS everyone else: wha

[@sarahwithstars]

"do you want to use my radar key" "What's that?" Most restaurant and mall toilets are cleaned twice daily, and if the disabled loo is locked, and isn't being used by normies or mother's changing babies, they are so much cleaner than well used public normy toilets so I always offer my key to friends- especially ten years ago when I would go for a drink in bars or clubs when loos are disgusting but disabled loo is key only ;-)

[@esmith7915]

I feel the bodily function one😬

[@ScarletCandlelight]

Some days I wake up and forget I can't wait. I will go to stand and just fall. I have not walked on my own in 3 years. Gives me a chuckle some days. Also when I see Healthy not mobility challenged ppl I look at them like they are the odd one out I have not walked for so long. I always find it funny.

[@ScarletCandlelight]

Walk* sorry cell wanted to wright wait.

[@alliem8700]

I often go to stand up out of bed and swear loudly because a hip has subluxed/dislocated while I'm asleep. Once it's back in, I find it funny.

[@rosebishop192]

I feel so weird an inbetween. I have two chronically ill parents but don't have issues myself. So my normal isn't everyone elses and alot of people can't understand why I do or don't do certain things. because behind the scenes I'm helping my moms who are ill and I deal with there limitations. I admire them so much because they push through so much I'm going to tell them about this video so they might not feel so alone. we do joke around alot though with the dark humor. One time I ran up behind my stepmom and caught her right as she was about to fall in the floor and I knew she felt weird because one of my siblings was in the room who doesn't get to live with us very often and doesn't know the scope of things so I joked that I just wanted a hug, because I knew it was obvious what really happened and it broke the tension and made her feel better. We also joke about cancer, weird side effects,dying, and other fun stuff. that's what happens when your normal is asking your mom if she needs help getting out of the floor or does she need an ice pack for her head, or having a family meeting to weigh out the pros and cons of going to the hospital and which one we are going to- the nice one or the quick one. it's kinda funny how messed up stuff can be

[@SamirCCat]

I love that you have 2 moms

[@millicentevans9232]

I have a chronic illness for more than twenty years. I have tried every treatment they offer at my pain clinic. The last treatment i had was two years ago. It was sn infusion. Well it did not work for me. Having a chronic illness is no joy. Everyday pain is horrible. I know i am not alone in this struggle. I dont socialise at all. It does isolate you. Its hard to go out meet people because you know the questions that are going to be asked. I avoid all that. I just fine with my family they know how bad my illness is. But i just will not let it define who i am as a woman.. i feel very tired and i feel drained of my energy. There is not much excersice that i can do because the pain is fierce and i can be in bed for a month. In great pain. I am not going to be miserable at all. I stay in my truth and speak about how it is living with an invisable illness. My doctor gives me strong pain relief but i have been taking medication. For many years now and i strongly believe that its not working for me anymore. My strong faith in god my circle of love ones are the key to my happyness and support. I had to declutter my so call friends and family. Because they did not make me feel happy arround them. They like to brag and compare how well this family member id doing and i just got sick of it so. Since they like the stage i leave it to them. I dont need to hear or see any of them. Its a full time job togther with a heartless love intrest i once had and trust with my life. And he proved to be a disloyal rat. I should of never let him in my life in the first place. Anyway i have moved on i have a fresh start. And i am.very happy and content with my life. Its no good to be in arelationship with a compulsive liar. And a serial.cheat. its not happyness. I stay true to myself. I am not perfect at all but wearing your heart on your sleve. Is dangerous. Thats how someone can blind side you and bulldoze your heart. I have learnt a lot. I dont trust easy anymore. Because the face they speak to you with as soon as they find someone with more money than you and they have a bought house and can help them with a big fancy car. They abandon you so quickly. Even when you helped them up.when they had fallen. So no trust have i got anymore. I am loving myself and i have a great support from my family and the god i serve. I am peachy. I am in a better place now. Just my health i am trying to overcome. With all it does to me on a daily basis. But my faith is strengthening me. Today and the whole weeks i have had little sleep insomnia is got a hold on me. I buy eye correctors because no sleep my.eyes have dark circles and my daughter puts make up on my face its a mask i use at times. I have no energy and i am very very tired and in pain constantly. But i will not give up I am a strong woman i am a independent woman and i refuse to let anyone demish me. Any one can become sick its not catching. Its just our bodies is sensitive more to pain. And with no cure it is hard to be a rich catch for someone to live off. I am a survivor and i.pray one day a cure will be found. So it can help.the millions of people suffering from this condtion.

[@SarahBear1209]

I forget a lot of what you do. 1 of my issues is my brain is falling out of my skull.. (Arnold Chiari Malformation type 1) & my stomach hates me & just about everything I eat.. (IBS 'like' symptoms) I forget that others aren't constantly in pain. But when I'm reminded, I feel sad for myself. 😕🤷🏼‍♀️

[@sarahwithstars]

Well done on ridding your life of too many inconsiderate normies xxx

[@texasdude1984]

I forget that normal people are not awake at 3am in the morning from painsomnia, so when I Facebook message them, their wondering if something is wrong.

[@schechter01]

I can't check off all the items on this list, but I'm an FNG compared to some of the commenters here (& probably to you, too). My Meniére's Dx was only last year, though I can remember the earliest hints of it in 2013...a few seconds of dizziness at a time. My other conditions started much earlier, in my twenties (yeah, I'm an old fart) but they were just occasional irritations then. But these days, I can _definitely_ relate to the forgetting-you're-sick thing. Probably because I have trouble accepting my limitations, as they're depressing. I'll feel fine & think _"Time to do that wood project!"_ , get the tools together & sharpen up a chisel...but while I'm doing that, the vertigo starts & so does the head pain. That's when I realize it & think _"Ohhhh s**t, fergit it"_ then I gotta sit down. Or lie down.

[@nora-os7ln]

I have a very rare illness called TRAPS and it makes me get like all the viruses going around and every germ that can make me sick. And my joints hurt to and have already missed 30 days of school and we have had like 60

[@jasonpiper609]

I completely understand how it is. I've had 4 NDE'S starting at age 3. The near death experiences are awesome experiences, but the aftereffects are horrible. I've had a neck brace on for 7 years now 24/7. It is the most annoying thing ever!! Especially since I have to wear it while I 'sleep.' Even though I've been a chronic pain sufferer for 41 years, I still keep on fighting because I'm tough. I've been a CRPS warrior for 21 years, much longer than most people last with RSD/CRPS. My spine is mangled too from a nasty t-bone accident 22 years ago, hence the neck brace. I have pots also so I can sympathize with ya. Keep on truckin' and lemme know if you ever need someone to talk to feel free to drop me a line 0=)

[@circleofleaves2676]

I hear ya! Re: the bit about being comfortable talking to our doctors... I have a huge team and have multiple appointments every month. After I had a couple of rare complications from two separate treatments and we had established that my body was indeed the place of many lightning strikes, to make sure my doctor knew I didn't hold him in any way responsible I said to him "It's ok, you're definitely not on my shit-list" and he didn't bat an eye.

[@SamirCCat]

I forget people work... O.o

[@yumkittykitty]

I'm watching this and I'm thinking 'dude Portia's Cafe! maybe???' then you said it and I'm like :O YAS

[@TwitchyMoth]

I forgot that having mobility aids and using different ones from day to day is not normal

[@cori8489]

I am glad I found you! I am going through something pretty damn similar. Although i am still on a journey to a diagnosis.

[@SickAndTiredPublishing]

Cori B. I hope you're able to get your diagnoses soon! Having solid answers always makes it at least a little better

[@miakatherine9028]

just discovered you!!! love your videos

[@SickAndTiredPublishing]

Mia Katherine Thank you! I'm glad you enjoy them!!

[@luxsarrazine1141]

I do get the dark humor. My friends don’t understand why I’m so casual about my health problems. Like I’m learning to drive rn and I have POTS and I’m over here like why do you guys (my parents) trust me behind a wheel. I walk into walls on a daily basis. I’m as coordinated as a baby deer trying to walk towards a wall for the first time only the wall is waaaaayyyyyy closer than it thought it was. Or I’ll be with my friends and I’ll start laughing after checking my hr and they’re like “what’s so funny” “Oh, nothing. My heart rates just in the 180’s” right before I sit down on whatever gross floor is there cause apparently benches aren’t a thing And my friends wonder why I’m so appreciative of the school janitor... 🙄.....😂

[@jasonstockman3532]

❤️

[@janinemark633]

I had my doctor on WhatsApp lol! She was really awesome and used to listen. She migrated tho and passed me on to another doctor. I plan to add her to WhatsApp too lol.

[@connah117]

So do you or do you not have pot?

[@vatovega]

Do you have a video or ideas for employment with ME fibro chronic illnesses?

[@midajahjesso3241]

i forget that “normal” people don’t pop 8 advils at a time

[@TuggerAbbey]

Can I ask what you use the neck brace for? I have Klippel Feil and Syringomyelia

[@SickAndTiredPublishing]

We believe I have craniocervical instability - I'm heading to Indiana for upright MRI testing next week to confirm!

[@puresprice]

u really need 2 consider getting rid of that music 4 severe me/cfs patients 2 hear u videos, far 2 distracting & can cause crash. thx

[@Alyy_Cat]

This is my first video of yours but I just realized you're from Ohio too!? I'm in Dayton. #ohiospoonies

[@Alyy_Cat]

Also about the joking, I like to say "oh yeah I almost died when I turned 20" and "if this happens I'll literally die here on your floor" and people *never* know how to reply.

[@SickAndTiredPublishing]

Woo! Semi-local spoonie friends!!!

[@stacyyardley261]

I just want to date you

[@kharoe]

Liked the video except for the god awful music track. Couldn't finish.