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A BAD evening with CHRONIC FATIGUE SYNDROME/Myalgic encephalomyelitis. MECFS caught on camera.

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What does chronic fatigue syndrome look like? How does MECFS feel? What’s it like to live with a chronic illness? I try to answer these questions on a bad evening with my me/cfs. On this day moving was incredibly difficult, I was slurring when I talked and I was struggling to think in coherent thoughts, but I try to explain how I'm feeling and how I deal with feeling this way!!
Do you ever feel similar to this? (let me know in the comments)
My name is Elinor, I am a 22-year-old sociology student who has been living with ME/CFS for 6 years. I started making RU-vid Videos consistently about my experience with chronic illness and mental health struggles in June 2020!
This video does not necessarily reflect everyone's experiences with ME/CFS because we are all different and have different experiences. This is because ME/CFS can be different than I have experienced, and each person’s situation will be different and therefore each person’s story will be different!
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Follow me on Instagram / ellellell_brown
Follow me on TikTok / elinorbrown3
Thank you so much for watching!! Make sure to like, comment, and subscribe to see more videos from me every other SUNDAY!
#chronicfatiguesyndrome
#Myalgicencephalomeylitis
#ME/CFS
#Babewithamobilityaid

Опубликовано:

21 авг 2024

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Комментарии : 36

@moo4501 3 года назад

I just found your channel and it’s a breath of fresh air seeing someone like me, I’m in the middle of a flare up myself and it really helps knowing I’m not alone, hope your feeling a bit better ❤️

@ElinorBrown 3 года назад

Thank you so much!! yes, i am feeling better now xx

@gymchick76 3 года назад

Thank you for sharing the tired parts. I have ME CFS and often get like this. Sometimes I see so many people only posting the better parts of their day with this chronic illness and I start to doubt myself. This makes me feel less alone. Hope your extreme fatigue resolves soon ❤️

@ElinorBrown 3 года назад

you're so welcome! I'm so glad that I can help! mostly we just post our good days so it's not really representative of our actual lives! you are definitely not alone 💖

@faeteiniker1945 Год назад

Thanks for sharing I'm honestly about to cry this video is so special to me and reading the comments makes me feel less alone

@ElinorBrown Год назад

so happy to help a little, hope youre doing ok 💜💜

@AGirlCalledNaomi 3 года назад

I have M.E and I'm a RU-vidr too. I defiantly agree how on our channel we plan our videos and film when on our good days at a time when we have optimum energy/spoons and then we edit when we can and feel up to editing and we edit bit-by-bit until we have a finished video to share. Doing a bad M.E day is on my list but I've never felt well enough to set up my phone and tripod and talk when I'm not feeling good but I feel that when you are a disabled vlogger it's important for viewers to see us when we're not feeling amazing and that's why I feel this video is so important for you to share on behalf of the M.E community.

@ElinorBrown 3 года назад

Thats cool! Yes, i'd been wanting to do it for ages and never done it for the same reason, until this day where my mum suggested it and set up the camera for me and helped me think of what to say (brain fog) which was really helpful!! I definitely think its important to show the bad stuff too because feeling along in your illness is awful!!

@holz3811 3 года назад

Thanks for sharing. I completely get where your coming from with the slurred speach/brain fog, non working hands at times when I'm struggling and the back spasms. I get them all too amongst the many other symptoms we get with me/cfs. I am also weak in my left side, I have a constant dead arm feeling in the top of my left arm. Had my Pfizer jab tonight in my left arm and it feels awful already. Glad I found your videos, now subscribed.

@ElinorBrown 3 года назад

I'm so glad you enjoyed the video! I hope you're feeling ok x

@holz3811 3 года назад

@@ElinorBrown I'm ok now thank you, thankfully the effects didn't last too long x

@GreatGreebo 3 года назад

I just found your channel. Thank you so much for this video. I’m coming out of my latest flare up (not to be confused with a full blown “crash”) but I am definitely struggling! It’s oddly comforting to watch your video documenting your bad M.E. day because it reminds me I am not alone. I’m sorry you have M.E. because I wouldn’t wish this disease on my worst enemy and you are such a lovely person. Hang in there ❤️

@ElinorBrown 3 года назад

Awww! Thankyou so much for this comment! It means so much to me!! I hope you are maybe feeling a little better now! Im so glad the video reminded you that you are not alone, as that was my original hope for the channel!! 💖

@mommiesfrugalfinds7318 3 года назад

I have this too. This is about how my morning is going. I’m so sorry you’re going thru through this.

@ElinorBrown 3 года назад

I'm feeling much better now! Hope you're doing ok xx

@alizaras 3 года назад

Thank you so much for sharing. I randomly drop my phone and cant really write on the phone when I'm in a bad part of a flare up as well. I think you're on to something with the movement limb by limb like that, I was told to visualise small movements before actually moving the hand so maybe that could help as well :) I also try to have the little rests to conserve energy, like closing your eyes when trying to formulate thoughts which does help a bit. I feel for you and I'm so happy you had your mum there to help you a bit. We're strong, I sometimes don't think people realise that but seeing you go through this and identifying with parts of it reminded me of that. Something that keeps me going through the bad days is the reminder that there are good days as well.

@ElinorBrown 3 года назад

Thankyou so much!!

@darrenreynolds6077 10 месяцев назад

Oh bless you darling. That was really hard and tough to watch you go through that. I just wanted hug you have a cry at how hard life can throw you. I was surprised how quickly your speech and eyes clear up after having a little rest. Watching you going upstairs was really emotional especially the last couple of steps. ❤

@ShannonEmelia 3 года назад

I just caught up with your videos! Loving them 🥰

@ElinorBrown 3 года назад

Yay! Thank you! im so glad you like them

@shahilagh 3 года назад

I have fibro with pain and fatigue ...I have the same symptoms- numb hands legs, extreme weakness, not able to talk from fatigue, sensitivity to noise, lights everything, ... constant pain over years (since 2012) wears on me .. and life is difficult .. it is like you drop water for years on stone ...... it opens up ... I feel chronic pain like this has influenced me this way ... even though it is not as extreme as some other pains, but its constant pace over years has just taken the spirit of life .

@ElinorBrown 3 года назад

i definitely know what you mean!! hope you're doing ok at the moment xx

@shahilagh 3 года назад

@@ElinorBrown you too darling ... I smiled when your video showed you moving from slow slurring talk to normal passionate talk ... It indeed hits home .. only those who have it understand

@tp6299 3 года назад

Thanks for posting that Elinor I really appreciate your videos This is excalty what happens to me sometimes just knowing other people are going through this too is enough to save my sanity and know that this isn't just in my head Maria (41 year old with M.E. for about 14 years) I hope you have a great weeknd ***side note....edited...my heart stopped when you were going up the stairs...when I'm weak going up the stairs and I'm having a crash I'm always worried of falling so when you stopped to sit down I breathed a sigh of relief lol***

@ElinorBrown 3 года назад

Im so glad that i can help a little 💖 it really makes creating videos completely worth the effort! 💖 Yep! stairs are the worst!! i sat down for a while, though i cut most of it out 😂 I would usually get help when i feel like that but my mum was in charge of camera work so i was on my own, and it was ok in the end 😀 Thankyou 💖

@tp6299 3 года назад

🌝❤🙏

@goatvomit 2 года назад

Thank you for sharing. Sometimes, I think I have CFS or something like it. I suffer migraines, dizziness, and random episodes of tiredness. Sometimes I have what I call, "involuntary naps" where I absolutely can't stay awake despite getting a healthy 8-10hrs of sleep. It's been this way for years. Need to get my insurance situation handled so I can get a better doctor. Curse you, American Healthcare system! Anyway, thanks again for posting this. It makes me feel less alone. Sometimes I feel like everyone just writes me off as lazy. But seeing someone else having a similar issue is comforting in a weird, morbid kind of way? 😅 Hope you understand what I'm getting at. Take care!

@ElinorBrown 2 года назад

I completely understand, its why i started my channel!! You're not lazy, you are doing your best!!

@heatherhartman6474 3 года назад

Lotsa love, blessings and less days of pain & fatigue 🤗🥰

@ElinorBrown 3 года назад

awww thankyou x you too x

@VintageRayne 2 года назад

I took an almost 5 hour nap today. I didn’t have much choice in the matter. Got up & ate some food. Working on a bath & rehydrating. Tbh what takes me so long bathing is getting the gumption gathered to get out. That means getting a towel on. Then getting clothes & basic toiletries on. I have the back spasms too. You might try Village Naturals Chronic Pain Epsom salt soak. I find it quite lovely & it helps my pain levels. Thank you for your transparency. 💖

@ElinorBrown 2 года назад

Naps can be so important! yes, totally agree, getting out of the bath sucks! ooo sounds nice!

@sugaredyoongi Год назад

I have long covid and this is relatable. Thanks for sharing this.

@mariannelabanane2589 Год назад

If you have a diagnosis of myalgic encephalomyelitis, always look for the underlying disease. Lyme disease is very often the cause. The symptoms are similar. I had this diagnosis (CFS/EM) 15 years ago and eventually found out that I actually had Lyme disease and other tick-borne infections transmited by one tick I hadn't seen. This is one of the main causes (not the only one, but the most important to look into). However, be aware that Lyme disease tests are not very reliable. Lyme disease specialists first check for symptoms (some symptoms are particularly typical) and do a blood test as well, but only at the best labs for testing for this disease (Igenex in the US).

@ElinorBrown Год назад

I have been tested for Lyme disease, and it was ruled out by doctors before I got a ME/CFS diagnosis.

@mariannelabanane2589 Год назад

@@ElinorBrown That's good if doctors start to check for Lyme disease! It's getting better. Have you been tested in a Lyme disease specialised clinic? A thing that can give a hint about Lyme disease is to take Lyme disease antibiotics (Doxycycline) and see if there is a herxheimer reaction (important worsening of symptoms caused by the die off of too much bacterias!). It's not the only cause hidden under CFS/EM. There can be many other things like toxic mold exposure, candida albican excessive proliferation, endocrine problem, multiple sclerosis, myasthenia gravis, heavy metal toxicity, etc. or a mix of more than one of these problems. I hope you gonna find the underlying causes. When you find it, often you can do things to get better!