I so relate to pushing through to get a piece of paper to make you more employable and then making yourself unemployable because you pushed so much

Last year I tried to push through my symptoms(they just started at the beginning of last year) thinking I was gonna make it summer and everything would go back to normal🙃. Alas the summer is ending, school is starting soon and I feel just as crappy. Finding channels like yours have been so helpful and make me feel less alone 💜

Really relate to all of this Elinor. The boggle rules are always changing for me and I’ve pushed myself far too much since my diagnosis in just under a year ago. Finding your videos so helpful ❤

I pushed through 4 years of intense studies, fought to work for 1 year and then collapsed into illness afterwards. Don't ever forsee being able to go back to my profession. The sense of loss is huge (now in a wheelchair and no social or work life). Pushing through is not worth it! Pacing is the way forward I think... 🤞 🙏🏻

Cried a little when you spoke about pushing through being the wrong thing to do. I've been trying to get my high school diploma in my early twenties after having had to drop out as a teenager due to disability, undiagnosed at the time and I've reached the point where I've repeatedly cut back on my timetable and workload and it hasn't helped. It'll definitely take a while to get back to a sort of baseline where I can manage day to day. I can't speak to your personal experience but I've had a lot of people around me who overestimated by ability to cope and I wanted to complete school so badly that I've pushed myself and let myself be pushed far beyond what's reasonable and acceptable. Sorry for this long long comment but it's such a relief to see I'm not alone in struggling for ages and then struggling to try and readjust and recover with a 'new' kind of illness.

Hello, just found your videos. Struggling with ME/CFS for a few months now, I think the illness was here since 2018 where I had a very bad virus and many things changed since then. But because I did not know that I should not push through I thought I could train my body to be able to function again. February this year after I guess some other infection (which I had a lot in the previous years aswell) suddenly everything became extremely bad, I got a lot of pain, sleep problems, of course the extreme exhaustion, crashes after physical and mental activities, and a lot of cognitive hardships. I cannot read anymore, which I loved and I am a very fast and passionate reader. I just cannot follow through. I cannot stand for some time, not even talking about real activity. And the last part you describes with finding the rules is the place where I am currently in. I have no idea, what I can do, when I need rest, how to even be able to get my environment to support me in this and respect my situation with the rest I need without me whining about constantly. Its such an overwhelming feeling to suddenly dont know yourself again even tough you thought to finally know yourself. I could do a lot before February, even tough I surely was not well since this infection, which I just realized in the last couple of weeks. BUt it has gotten to the point where I have the feeling I cannot do anything at all, but I wanna, I just cant stand it to lie in bed all day and accept that, I wanna do something I like and be able to be me again. Thankfully I finally have a good doctor who knows about this illness, thanks to my general physician whom I have mad respect for thinking about this illness even tough there is so little knowledge about it in my country aswell. BUt still its hard to find the rest when you dont even wanna rest but know you cant do anything aswell. SO I really could relate and hope you find your rules again and maybe they better a bit after some time.

Pushing through is always the wrong decision in the long run but sometimes it feels right in the short term. It’s a very difficult balance to achieve. Hope that you can sort out your new rules now that studying is over 🤞🏼💜💜

Oh no! I also push myself too much! I’ve been told by my OT and PT that they are worried about me pushing myself too much. And it’s all because I want that external reward of being able to be out, be social, get that natural dopamine. And then as soon as I’m home- the CRASH. The pictures of you struggling and not able to even sit up- I relate. And I’m so sorry!! I am so thankful for mobility aids and things that can help us live our life again!!

I finally had my rules (3,5 years with ME/CFS) established. Before, it was a rollercoaster, because I had no baseline. Recently I got Covid and my rules don't fit any more. My baseline is worse. I feel your frustration. And I can understand to "push through" (against knowing better). Pushing through for me is important because of: self worth, being with my peers and make the steps in live they do (I already missed so much in my life because of illness), despair (I won't give up, I won't accept my condition), just want to live as "normal" and as you said at some point you have invested already so much and if you quit you loose everything and have to start from the beginning, struggeling the same. The latter problem could theoretically be changed... But rules are still too often not inclusive. There comes the pressure in and everything gets worse. It's the worst point if I know what I should do for saving my health but I can't weighing up all pro and cons.

Hi Elinor, I’m really relating to your content. I don’t have ME/CFS. I have schizoaffective disorder bipolar type. But even when I’m not having an episode, i have to be really careful of my energy usage to avoid triggering one. I know its not the same thing, but it is a chronic disorder that is stigmatised and i just find so much comfort in your videos.

Thank you so much for your videos, i really felt this one. I tried college when i didn't even imagine i was ill, i looked perfectly healthy on the outside and didn't understand why everything felt and was so difficult for me. I knew i was having over the top anxiety and most likely depression, and also chronic insomnia since I was 13. But. I thought everyone struggled like me and I just wasn't good enough to push through. I chose to leave college even though it was years of excruciating fights with my mother. I'm now 32, with autism and ADHD diagnosis, along with the awareness I'm disabled and my symptoms resemble very much ME/CFS (I consulted two neurologist, the second one kinda confirmed it but I still don't feel it's official enough, even though I say yeah I have chronic fatigue issues) and my mother still think I'm wasting my intelligence. And of course I can't work so I can't cut ties with her. When I hear your story like in this video I feel like this is what my mother wants for me, a piece of paper and an even more broken daughter. - yeah I see regularly a psychologist, specialized in neurodiversities - Looking back I think my too much pushing through was high school. I was going to a kind of "difficult" high school, here in Italy we have liceo classico, you study greek and latin. The pressure about it from my mother was huge and I was already a wreck, also because my father was having extremely big health issues (symptoms like degenerative brain disease). Of course it wasn't worth it, I didn't know better and even if I didn't I couldn't have done anything about it. I have to thank you because starting watching your videos two years ago made me realize I'm disabled. For me it's a fundamental thing to understand, it's still very difficult but I least I know I can't compare myself with average healthy people. I know I shouldn't compare me to anyone, thief of joy, yadda yadda But it's so difficult, I'm still working on it with my psychologist.

I'm very glad I found your videos. I hate that you are going through this and this is a part of your life but I'm glad that you are opening yourself up to show people what you're going through so that others can relate. For the past three years I have been battling something very similar to this. When I first started it was horrifying. I was working in a warehouse and it's just all the sudden one day I remember the day that it happened something just snapped in my mind and in my body and I was never the same. I was so fatigued it was so painful my body was hurting my muscles were weak I couldn't walk I couldn't hold my head up I couldn't lift my arms to do anything I couldn't even use my arms to hold my phone even the smallest amount of weight from a very tiny crossbody pocketbook was too much for me to carry. With this I became very very anxious constantly and had many panic attacks and experience depersonalization and derealization. Very limited to what I can and can't do I hurt randomly throughout my body it'll feel like stabbing pains and random spots throughout my entire body random times throughout the day. I also have a lot of pain in my joints and muscles it will feel like a burning sensation and sometimes a stabbing pain and pins and needles. Sometimes I feel the most normal that I can feel and I can kind of do things at my house like normal and sometimes go into small stores like normal. Other times as soon as I get up my heart starts beating really hard and I feel like I have something sitting on my shoulders pushing me down and I get really dizzy and very light headed and my ears will ring and I'll feel like my body's on fire and I'll go into a major panic attack. At first I thought that it was the mental illness that I was diagnosed with that caused all these physical reactions but sometimes I wonder if it's the physical illness that's causing the mental or maybe it's just all a combination together. But some days I feel okay in my head and then all of a sudden my body just feels like it cannot do anything at all and I can't even talk and when I do talk I can't think of the words I'm trying to say and I'll be so forgetful it's very scary. I kind of feel like this is what it would feel like to be 85 years old. It's debilitating and it's embarrassing and I feel guilty all the time and I feel like I'm being dramatic too and that is like one of the worst things. I constantly question myself and wonder if I'm just being too much or if I'm just a week or if I'm being over-the-top. I feel like I develop a different symptom every couple of months. 3 years ago when I went to the doctor he said that I had chronic fatigue but not the syndrome. Also was dealing with a lot of panic attacks that was causing that chronic fatigue and he just gave me Zoloft which completely was too much for me and I ended up in the hospital. I've been too afraid to take any medicine now and it's been 3 years the only thing I take is a Vistaril which is pretty much just a Benadryl that helps with anxiety that's been prescribed by my psychiatrist. I feel so tense and so stiff and achy and fatigued all the time and I thought that it would start going away or get better by now since it's been 3 years but it hasn't and I feel like in a way it's getting kind of worse. I can't really go into stores because I feel like my body shuts down and I don't know if it's because of the anxiety that that happens in the pure Terror and panic or if I experienced a terror and panic because my body start shutting down from exhaustion. There have been times where I thought that I needed to get a mobility chair to go into Walmart because walking just seemed absolutely a no-go. I always have to have a buggy for balance and to make me feel like I'm not so heavy but sometimes that's not even good enough that I have to abandon the buggy and hobble my way back to the car. I have actually been considering getting a walking stick as well help me balance and feel more secure but I also feel like I'm being over-the-top and dramatic about it but at the same time I know that it will help. I'm only 30 years old it does feel dramatic but I guess I can't really help it. I'm in the process of getting some insurance so that I can go to the doctor again and get some tests ran because I feel like having a diagnosis would validate this it makes me feel a little bit better in a way. I try not to let the way I feel consume me but it's very hard not to. It's definitely took the life out of me. I'm grateful for the good days. I just carry around a lot of guilt because I can't do very much and I feel like I weigh my worthwhile I'm what I can do and how much money I can make and I'm not working right now. I don't even know when I will be able to work. It's so crazy living with something like this. I have said in the past that I wish that there was something more physically visibly wrong with me so that I wouldn't feel like people thought that I was kidding or being dramatic or just lazy or something. It's definitely tough

I'm definitely familiar with having the rules boggled, not just when i first got CFS, but also I got it just before lockdown, and I recovered almost completely. I hadn't been diagnosed yet though, so I thought I was recovering from taking an anti-depressant which didn't work for me. I thought I was better, so I drove myself completely into the ground returning to normal life when lockdown ended and relearning those rules was so frustrating, but was what eventually got me diagnosed. I just graduated from university in June and definitely am still recovering and keep thinking "oh maybe I'm back to normal now" but I'm not. Maintaining the self-control needed to avoid a crash for months on end is agonizing, IMO.

Thank you so much for this video and sharing your story. I’m currently at the start of my third year (it’s taken me until 24 years of age to get to this point) and it feels very hopeless. Sending you lots of love and spoons 💚💚💚

Thank you for sharing :) I relate to everything you said. Forcing yourself to push through even while you get sicker and sicker. It's a hard way to live

I pushed through for so long as well.. And 'make myself worse'..i so understand....

Yes, every couple years, I get another symptom or another problem and feel like I'm starting all over again. I brought it back to the minimum amount I can do, with alot of help from my kids. I'm hoping to slowly build it back up x

Congratulations on your degree Elinor! I've been managing my disability for 3 years and have followed your journey. Thank you for showing the reality of what it's like for us, your videos help me feel less alone ❤

Yes!! This is definitely me, I had all my rules etc and I thought I had everything managed. My best friend visited me (I live in Australia she lives nyc ive just moved here a year ago) Anyway she visits...I kind of sorta threw all my rules out the window. While we didn't do too many crazy outings I did do a lot of movement outside of the norm. (she was here for 3 weeks) When she left and I started to "recover" my ME/CFS just GOT worse and I haven't really gotten to a baseline since. it took me nearly 2-3 months after that to really come out of the worst of it. But now i've had to basically be homebound because I legitimately do NOT know what activities are OK and which aren't. Every time I think im predicting or rest right I still get a flare up of some sort... Its really frustrating. I haven't been able to obviously make any friends being in a new country and having all these boundaries around me... ive never had to make friends while disabled from scratch so its been challenging. Everyone near and dear to me I met before chronic illness. So, not sure how to make new friends... so far the friends I thought I did have have kind of withdrawn from me since ive become more visibly disabled. I'm an ambulatory user like yourself. I still don't have the confidence that I SHOULD have. (I would be mortified if someone saw me push my own wheelchair like i saw in one of your previous videos I don't want anyone doubting me alas I will have to confront that fear eventually) I wish I could make them understand. Every time I bring it up its sort of like a "oh yeah, I feel tired too" kind of thing. I've tried... I just don't have the energy to correct her or educate or anything of the sort... So I've kind of just withdrawn. Really they could just come hang sometimes at my place but instead invite me places... And right now I just really can't. I really can't. Lately I only leave for doctors appointments and when my mother in law invites me out (which probably puts me into commission for another week or two after *sigh*) even using my wheelchair like propelling myself is less than ideal because A- The fatigue is so bad B- my joints have started to hurt pretty badly particularly my right shoulder and now other joints have joined in the party (hooray!) I woke up one morning thinking my right arm fell off im positive its not like i pulled the joint but it bloody hurts to even do anything. (even as I type this it HURTS) it feels like im going in circles because my wheelchair is supposed to help with flare ups when im in pain from my fibromyalgia/FND but instead now, so I don't make my shoulder worse I continue walking and standing when I SHOULDN'T (at home anyway, outside my partner wheels now he's amazing) using my rollator walker and my cane. It's a never ending cycle. (the joint pain now has been around 2 months since it started ive only taken celebrex for it but my shoulder is about 2 weeks at this point) i'm not sure what to do tbh. It feels like my life is getting smaller and smaller where I can't even enjoy my hobbies. I like to play games on my Nintendo switch somedays recently I can't even lift it! (btw I the OG old switch the animal crossing version mind you... the OLED feels a million times lighter) I can't enjoy FFXIV (final fantasy 14, it hurts my shoulder (s) my left one has started to hurt as well. when I type alot etc etc etc it's been a really big part of my life for a few years now (context: its where I met my now partner :)), or make art really I'm right handed it would crazy to even start making any serious art at the moment. I finally have an amazing GP at least I have a pain specialist appointment lined up and Neurologist. (totally different story there) But anyway, if you made it this far thanks for reading. I love your videos and I understand 100% what you're going through I hope you're able to reach a baseline sometime in the near future and I will work on being less embarrassed about my mobility aids.

This was so so relatable to watch. In the last year I've developed a new chronic illness on top of my preexisting ones and it's completely rewritten the rules I was used to. For most of the year I pushed through and tried to keep things as normal as possible. I cut out as many factors as I could in order to keep working, but in the last 4 months I had to stop that too. Day to day the rules shift and I have to work out if I can, e.g. shower today, or am able to walk from one room to the next. Each time I think I've figured it out I'm proved wrong and it is SO frustrating. I feel like finding the balance is a lifelong mission, and probably not attainable goal, but we gotta try! Sending all the disabled solidarity

I completely relate to this, I am 19 - been ill since i was 9, just started online college and it is killing me. I am unable to work - but not ill enough to claim PIP. I have just bought my wheelchair careco icandy - the pink one! I also took a gap year after school and I was feeling relatively ok. Now I can barely walk the dogs etc.

I’ve had a similar experience this year especially. Although with a different condition. It sounds very similar and I just need figure out a way of how to keep a job and support myself whilst also not steering myself into burnout phases again and again and again 😔🙈

Sending you love and spoons if i could

Not me seeing this video, while needing to go study, but i dont want to get in a cicle of doing too much, get in a flare, etc etc

Looking forward to more videos (no pressure though) 😊

Beautiful ❤❤

I am from India please help me