ME/CFS DAY IN THE LIFE Living with Myalgic encephalomyelitis Anxiety Attacks, Medication and Resting

A Realistic Day in the life with ME/CFS. This video shows what it can be like to live with Chronic Fatigue syndrome/Myalgic Encephalomyelitis. Including organising Medication, Resting and having anxiety attacks!
My name is Elinor, I am a 21-year-old sociology student who has been living with ME/CFS for 5 years and has recently started making KZbin Videos about my experience!
This video does not necessarily reflect everyone's experience 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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CFS Morning Routine: • CFS/ME MORNING ROUTINE...
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Follow me on Instagram / ellellell_brown
Thank you so much for watching!! Make sure to like, comment, and subscribe to see more videos from me every SUNDAY!
#chronicfatiguesyndrome
#Myalgicencephalomeylitis
#ME/CFS

[@ThornyRoseV]

Im 29. Have had this for 11 years. I dont know anyone else with M.E and there isnt any support where I live so its comforting to watch this.

[@ThornyRoseV]

In fact I wasnt diagnosed until a year ago which is crasy

[@ElinorBrown]

I'm so glad i can be a little comforting!! If you ever need to chat you can message me on instagram!!

[@ElinorBrown]

wow! that's a long time without a diagnosis! I'm glad you've got one now!

[@sylviannadi1309]

Where do you live?

[@ThornyRoseV]

@Sylvia Nnadi, I live in Iceland. There was a study done last year and the average time it takes in my country to get diagnosed with M.E is 7 years. Its the highest in any developed country. Guess I was unlucky cause its 4 years more in my case. Lot of mental abuse from doctors who flat out called me mentally ill. When you dont have a diagnosis no one believes you. Doesnt matter that I have it now regarding other people because everyone made up their mind long ago...plus the stigma and disbelief regarding the disease in general.

[@jenniferhedrick2852]

Thank you. I was searching for a video to explain the experience. I have long COVID and my gosh it’s all just so overlapping. Anyhow your recording is so spot on I felt like finally someone is explaining EXACTLY how life feels. 😢❤ thank you Love. I hope this finds you well.

[@HappyCatastrophy]

This video made me feel less alone. Thank you. 🙏

[@Fuphyter]

Hello Elinor. I'm so sorry you are dealing with this. I have Ehlers Danlose Syndrome. They have some common symptoms, including complete exhaustion and chronic pain. I'm 66 and just found out a few years ago why I had health issues my whole life. I had to go on disability in 2011 due to being wiped out. I slept til 3pm on my 2 days off. I wish you well, sending soft hugs and my heart. ❤

[@wile031123]

Love you. You'r amazing. Sorry I'm suffering of Me/Cfs in 28 years. My English is not so good. Million kisses and huggs to you.

[@kittymitts40]

I started brushing my teeth in my bedroom using a plastic bowl instead of a sink and a bottle of water. Then, when I next go to the kitchen, I take the bowl and rinse it out and dry it. It makes it so much easier to brush my teeth and save my energy for other things.

[@ElinorBrown]

That's a great idea!! I just have mouth-wash downstairs for when i can't get to the upstairs bathroom!

[@HannahFrostFreespiritedwarrior]

Sending love! It’s so hard dealing with this illness especially if we have to push ourselves to walk somewhere! I do often as I’m not confident propelling my wheelchair on my uneven streets yet. My downstairs bedroom was a godsend in my second year of uni but relate to the bathroom struggle!

[@ElinorBrown]

Hannah Frost yes! It can be so tricky to do some things, especially when you have to do it whether you feel good or not !! I’m sure you can do it with a bit more practice 💕 you got this ! Yes, the downstairs bedroom is so good when I get home but the upstairs bathroom is so annoying. I’m thinking about bringing my toothbrush & toothpaste down the the kitchen, but there’s nothing I can do to make the other things easier !! 💕

[@wildflowersar3595]

i can relate to alot of your struggles. on the worst weeks i get my shopping delivered which really helps me. thanks for sharing your self advocasy & insight for your chronic illness.

[@ElinorBrown]

Yes, shopping delivery is great!!

[@sandi6818]

You’re so young to be going through this. I was diagnosed around your age. Triggered by mono. Hugs. Hope you’re feeling better right now.

[@Zeepjeliefs]

You are quite brave and positive. Your day in the video is like a typical day for me now. Sending love and hugs.

[@mosheontoast]

This has made me feel SO SO SEEN

[@ElinorBrown]

I'm soooon gladd!! xx

[@ASMR-XI-ZUI]

Hello I have multiple medical conditions. My ME/CFS has been getting worse these last few wks sometimes becoming bed bound. When I tell my parents about ME/CFS when flare ups can become bad. They say u will be OK and brush it off. I also have CVS (Cyclical vomiting syndrome) , IBS and mental illness. Currently live on top floor (4th floor) with no lift. But my mum thinks I'll get better and wants me to stay in current flat and not go back on waiting list. Sometimes I have to go back to my parents to stay which is a house and 1 level of stairs. I don't know if long covid has made it worse. Which I had in summer 2022.

[@jond2472]

Your a brave strong lady for showing people this...

[@ElinorBrown]

Thankyou, I just want to make the content i needed when i was first diagnosed and felt alone!!

[@genericyoutubehandle.]

"it's really weird to film yourself crying" 😂 - the vulnerability is something so valuable though 💕

[@ElinorBrown]

Amber Snary haha 😂 it felt so weird ! Thankyou 💕 I hope it can be useful/relatable to someone !!

[@VintageRayne]

I used a backpack & a folding rolling cart when I needed to walk for groceries. Made it much more manageable. Most supermarkets will even let you use your buggy to do your shopping, too. :)

[@ElinorBrown]

Thanks for sharing!!

[@MariaReyes-ih2wg]

We're in the same page. I really wanna recover asap. I want to live life to the fullest but I get tired easily. Let the Lord heal us.

[@margaretkvinnherad8952]

Thank you so much for sharing !❤ I'm in the process of being diagnosed, but it's a bit tricky, cause I already am diagnosed with PTSD and IBS, and both of them could potentially be causing my fatigue. I hope I'll get help for my problems with fatigue tho, being exhausted all the time is driving me crazy. Glad to hear that you live with someone, for me, that has been a big help. Don't think I would have managed to live by my self to be honest.

[@esterfleurke9309]

Thank you so much elinor! This makes me feel comforted and seen. I'm texting this from bed, exhausted. I've been missing seeing your videos. How are you doing at the mo? Love, Ester from Amsterdam❤

[@melissma100]

Thank you for sharing your day! It’s nice to know other people go through the same thing :) one thing I’d recommend is an electric toothbrush! It has been an energy saver for me. You can get cheap ones at your local supermarket :)

[@ElinorBrown]

I’m so glad you enjoyed it 💜 I’ve got one, but there’s nowhere to charge it in this house 😢💕

[@melissma100]

@@ElinorBrown Welcome! Aw that must be annoying, maybe you can find one that uses AA batteries instead?

[@sl8138]

Thank you for this. 💜

[@ElinorBrown]

You're so welcome!

[@Baby.bloodlust]

I’ve had this for 20 years now. I had pneumonia at age 4 which triggered my ME. It’s more a problem now because I had a child and it went from manageable to catastrophic because I aren’t allowed to rest as much. This video made me feel comfort ❤️

[@ASMR-XI-ZUI]

Do u find that energy levels went up overtime with a child or the same.

[@LivingLifeSlower]

I'm here as I live with MS. I'm now living with this horrific symptom. Had 3 attacks today and though my time was up.

[@Truerealism747]

Horrendous the rib cage pain had it 2.5 years stabbing my mum who just lost had severe ms I have fybromyalgia have you been tested for heds

[@dfjulesful]

I brush my teeth in my room. It really helps

[@ElinorBrown]

I do now as well!!

[@nathanh1665]

The me/cfs drunk feeling is real...😮

[@MackLee23]

Do you mind explaining what your misery building into something worse means? I personally deal with sadness that can quickly spiral into legitimate depression. It's scary but ive learned that it's definitely correlated with my overall level of fatigue.

[@sandrachaney8995]

Dear Badsz, I think this is CFS please go to the Drs. You will probably have to go to a Specialist. That feeling like your dying seems to be a part of ME Blessings and Luv from Sandy in NZ❤

[@ilikebmw]

look at the title dumbass

[@ShannonEmelia]

Loved this! Would you do an autumn evening routine? I’d love to see that 🍂

[@ElinorBrown]

Thankyou! I'll put it on my list!💕

[@mentalhealthwithalana]

I might be dignosed with chronic fatigue syndrome as I've had all of the symptoms and my health has declined so much I'm barely functioning at all. I've got a new doctor after my normal doctor was completely dismissive and said it was basically all in my head. Hopefully I will get the dignosis so I can get access to extra disability services and funding, obviously I don't want any new health dignosis but I need to have answers to what is going on with my body.

[@KyleLeeuw]

You’re amazing sweetie ❤❤❤❤ wish I could talk to you sometime about my disability issues

[@extortin]

I'm 27 and def have this and didn't even know what it was until I found it myself, my doctors are useless at diagnosing.

[@badzs.]

I’m not sure if I have cfs, but I have been so tired, physically weak, I feel like my muscles aren’t engaged, i deal with anxiety a lot. I feel like I’m going to die all the time due to feeling weak. It’s weird.

[@ElinorBrown]

hate to say it but that sounds very relatable!! I hope your feeling ok!

[@badzs.]

@@ElinorBrown I’m doing better :)

[@karlyx1585]

Hi, me too! I hope you’re doing better by now :(

[@ChronicallyMichelle1995]

Can you keep toothbrush and paste and even body wipes in your room and use in the kitchen instead? The wipes for if you need a quick wipe down but can’t get upstairs

[@ElinorBrown]

a great Idea!

[@ASMR-XI-ZUI]

With my OCD I would wash so much. Now I can only bathe once a week as otherwise my skin dries out so much n cracks/peels.

[@VintageRayne]

I often brush my teeth at the kitchen sink. Less walking. 🤷🏼‍♀️ :)

[@ElinorBrown]

Love that!

[@Sueer225]

When you are walking somewhere and stop to take a break on the way, how long do you rest before resuming your walk? I’m asking because I’m struggling with pacing. I know everyone is different, but an idea would help. Thank you so much. Your videos are so well done. ❤️

[@ElinorBrown]

It depends, I try and sit for 10 minutes ish, but sometimes I get bored so I get up sooner, but then i have to rest more often so its a balance!! I also try and sit down before I NEED to sit down as it helps me to feel a lot better in the long term!!

[@daniellecoleman6979]

How are you doing now?

[@bluewave8212]

do you wear an eye mask to rest? They help!

[@ElinorBrown]

I don't at the moment! I'm not sure they would work for me, because I move quite a lot when sleeping and i think that sunlight coming in, in the morning helps me to wake up! but those are only theories, i should probably test them out because i know a of of people find them really useful! 💕

[@AGirlinherSunglassesMECFS]

How are you doing these days?

[@oliviahinkel3695]

I know this is an old video and this may be a stupid question, so I apologize. Can you not brush your teeth in the kitchen? Or is the kitchen also not downstairs? I mean I know you would still have to go upstairs to do other things, so I guess it doesn't really matter.

[@beepboop9519]

How long did it take to get diagnosed?

[@ElinorBrown]

honestly not sure, it was years ago, but i think between 6 months and a year, its not easy!!

[@TheDetoxCureGuide]

Hi, I made a video about recovering from both ME and Anxiety by removing persistent pollutants. This lowers immune system activation and restores anti oxidant levels. Please take a look.

[@user-lv4ov5rp6d]

Meds for what? There is no meds for ME?

[@ASMR-XI-ZUI]

Yh that's what I thought, the doctor didn't refer me to anyone. Same for CVS (cyclical vomiting syndrome). No cure just have to manage.

[@TransparencyBodycam]

How many boyfriends have you had?

[@ElinorBrown]

Hi, that’s a personal question I’d rather not answer. Thank you for understanding. 🙂

[@ThornyRoseV]

Why would you ask something like that ? Sick people can have partners you know..

[@Chirpingcherub]

That kind of a weird question to ask

[@masoudhashemi5792]

🤦

[@estelanavalenzuela311]

Your fine