My Chronic illness over the last year! ME/CFS and disability story.
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- Опубліковано 12 жов 2023
- This is part 2 of my disability story and a more recent update on my health and chronic illness as well as the aftermath of finishing university.
Part 1: • My disability story. A...
This video is a continuation my Chronic illness (ME/CFS) story which started over over 8 years ago ,including getting used to the idea of being disabled, and being comfortable with the word, starting to use mobility aids, starting with a walking stick and including a wheelchair and struggling to balance my illness with university work.
Start at the beginning of my story here: • My Chronic illness sto...
(Sorry about the weird cropping of a photo about 40 seconds in, I didn’t notice until too late!!)
Reminder: everyone with ME/CFS is different! So you or someone you know might have a very different experience with ME/CFS than I do at the moment! Also, remember that chronic conditions such as these can change dramatically over time, so my life may look very different to this in the future (and has be A LOT worse in the past).
Thank you so much for watching!! Make sure to like, comment, and subscribe to see more videos from me most FRIDAYS!lchair
About Me:
My name is Elinor, I am a 24-year-old sociology graduate who has been living with ME/CFS for 8 years. I also have anxiety and depression as co-morbid conditions! I started making UA-cam Videos consistently about my experience with chronic illness and mental health struggles in June 2020! I also love fashion, connecting with people in the community and being creative!!
Watch Next:
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Week in my life: • Disabled girl week in ...
Pip and universal credit: • Disabled girl’s PIP an...
Disabled girl day in my life: • Disabled Girl Day in m...
Getting a train with a Wheelchair vlog: • Getting a Train with a...
1 year with a Wheelchair: • 1 Year with a Wheelcha...
Dissertation and chronic illness vlog: • Working on my disserta...
Disabled girl room tour: • Disabled Girl Room Tou...
Decorating my Wheelchair: • Finally Decorating my ...
I Finally Bought a Wheelchair: • I finally bought a WHE...
Weird ME/CFS symptoms: • Weird ME/CFS Symptoms ...
I used a WHEELCHAIR for a week: • I use a WHEELCHAIR for...
I use a WHEELCHAIR for the first time: • I use a WHEELCHAIR for...
My experience using a WALKING STICK for 6 months: • My experience using a ...
I Bought a FASHIONABLE WALKING STICK?!: youtu.be/
Social Media:
Follow me on Instagram / ellellell_brown
Follow me on TikTok / elinorbrown3
Contact Me:
Direct Message me on Instagram / ellellell_brown
For Business enquiries elinorbrownbusiness@gmail.com
#Babewithamobilityaid
#differentaidsfordifferentdays
#Chronicfatiguesyndrome
#Myalgicencephalomeylitis
#mecfs
#disabledandproud
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
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... 🤞 🙏🏻
This is very similar to me, I pushed myself to achieve 2 Art and design diplomas several years ago and the stress of college and the work resulted in a huge crash crisis. I seem to have less energy every year, house bound and can no longer push myself, have had to accept this and now do either knitting or crochet and pacing it carefully, life is a daily battle, a shower or all over wash feels like a days work and further energy loss, 3 hours bedrest every afternoon. I totally understand how all this works and is still trial and error. Take care of yourself dear ❤️ xx
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 🤞🏼💜💜
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.
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.
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.
so sorry your rules are messed up 💜
@@ElinorBrownThank you 🌻. I'm hoping I can faster establish new ones, because now I have a lot of experience with that stuff 🙈
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
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.
that’s sounds like a really tricky situation! hope you’re doing ok! 💜
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.
I’m so glad to be helpful 💜
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 ❤
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'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
And the pushing through things I cannot agree with you anymore because I feel like I've just been trying to push through these past few years and I have worked for about seven months scattered throughout the few years and every time that I would I would be so sick that I couldn't do anything when I would get home at but lay in the bed if it weren't for my fiance I probably would have died cuz I didn't have the energy to eat or drink. And then I just couldn't seem to get better for months afterwards. It's hard enough getting up and doing basic things little basic things feel like a whole job. Throwing in a actual job is actually Overkill.
I just wanted to let you know that ME/CFS can be triggered by mental health issues. Many people develop CFS from trauma or mental illness like anxiety or depression. I got CFS a different way, I know exactly what you mean when you say the mental issues are from the physical, I’ve actually mentioned it to my doctor. I told them I’m not physically ill because of my mental health, but am mentally I’ll and struggling because my physical symptoms are causing it. Things like my fight/flight being out of control due to physical issues leads to anxiety for example. You aren’t alone in the way you feel. It’s maddening, and I get it.❤
I pushed through for so long as well.. And 'make myself worse'..i so understand....
Is not your fault
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 💚💚💚
You got this!
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
Sending you love and spoons if i could
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.
sounds tough! 💜
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’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 😔🙈
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 ❤
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
Looking forward to more videos (no pressure though) 😊
Working on it!
Beautiful ❤❤
I am from India please help me