Best and worst things I did for my ME/CFS in 2023! Crashes, pacing and a worsened chronic illness

I’ve done a lot of bad things for my chronic illness (me/CFS) over the last year and a handful of good things too! Living with a disability is always a challenge!
What are the worst and best things you’ve done when dealing with an illness, disability or impairment?
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!
About Me:
My name is Elinor, I am a 25-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 KZbin 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!!
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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 [e-mail]
#babewithamobilityaid
#neowalk
#walkingstick
#Chronicfatiguesyndrome
#Myalgicencephalomeylitis
#mecfs

[@foeyyz]

Its so comforting to hear someone going through similar issues as me. College has absolutely wrecked "my best" as u described it, and now in my last semester im trying to cut down and the exhaustion is catching up to me... alao the job hunting is so real, theres nothing that makes my heart drop more than every job application asking if i can stand for 8 hours straight pick up heavy objects, and work in a chaotic environment (i have POTS autism and a sleep disorder so all of thats an absolute no). Oh and despite knowing mobility aids would help me,im much much too ashamed to use them regularly, i only take my cane to big events like concerts and festivals.

[@ccc2784]

Thank you for sharing your experiences!

[@kaybrown3162]

A series of videos on your streamlining would be great. Hope your upturn continues into 2024. 😊

[@sarahvda4787]

Yes to a streamlining video 🎉 thank you for this one. It was very helpful!

[@jacks2222]

Hi Elinor. I just appreciate your openess and honesty with talking about this stuff. I had someone from the CAB to help me with the PIP process, she said ''if you didn't have mental health issues before dealing with the DSS you will after''. It's designed to lower the numbers of people claiming benefits not help the people who need it. But on a more positive note you are doing far more good in the world making these videos than if you were working a job for pay. Personally you've helped me understand and come to terms with some things that I didn't know were part of the fatigue. I'm much more at peace with a lot of things because of you and your beautiful authenticity..Thank you 🙏🙏 xx

[@swurvestar1]

Thanks so much for explaining almost exactly how I feel. I hate that you have to go through this too, but it's so nice to know we're not alone. It's definitely a struggle to balance your mental health vs physical and decide which activities are worth the crashes.

[@naomieggl]

I’ve found that my recovery is roughly 1:4. That means if I’ve pushed myself for a day, it will take roughly 4 whole days to recuperate from it. Or to use your example of writing a dissertation, if I had taken 6 months to write it, I’d need 2 whole years before I was back to normal. Most importantly, if anything else crops up before I’m back to normal, then that time has to be added on to my recovery time too!

[@ForTheLoveOfMusicals]

On the topic of inflexible institutions, check if it’s actually as inflexible as you think it is! My university for my bachelors was an inflexible institution, but if you had a medical reason you could take a reduced course load (they just didn’t tell the students that or put it anywhere where students could find it and the only way to know it existed was asking about it or knowing someone who did that)

[@silvermoonuk]

As someone with disabilities myself, I've tried volunteering in the past, but it was it hard for me to be a volunteer. Also, I've just got a wheelchair from the nhs recently. But it is that that mental thing of learning to use mobility aids.

[@beknight9399]

Oh, and I'm very interested in your "streamlining" 😊. I moved and because everythings new, I have to figure out how to do things! I think after a move it's a good point to adress this topic - how to do daily things saving as much energy as possible. Edit: My new kitchen area is wheelchair adapted (I can sit to prep meals, cook and wash dishes [sadly no dishwasher 😢]). I was on the minimalist side, even before I get ill. I struggle with a schedule for housework. I love schedules and before I get ill everything worked for me. Since I'm ill schedules are not working. So I do what's possible day by day. Every day it's to less. This gave me anxiety and depression. I know, following rules gave me a feeling of control. So this is a vicious circle.

[@beknight9399]

Hi Elinor, I agree, forms are exhausting and I really struggle emotional to write down "what's wrong" with my body and daily life. I had to do it last week for my blue badge and I hope I will get it. I wish you're going better with your baseline in 2024. Mine is stable - and I think my new wheelchair is a big part of this. Without you, I woudn't be able to make this step!

[@kayleighrose3996]

Thank you for sharing Elinor. I would love to hear more about streamlining 😊 it was helpful to hear someone talking about 'new rules'. Thats a concept I'm trying to get my head around atm with my chronic fatigue. I keep finding myself wondering what I have done differently or done 'wrong' everyday! I was also wondering if you could do content/share about what your typical rest period is like after different activities and what activities you manage to do most days? Thank you again for making such honest and relatable content! ❤

I suffered of the cfs and other symptoms that come with it helped me is that I found I am so sensitive to many natural and synthetic chemicals in food and environment, since I in strict diet and avoid chemicals in air, I feel much much better. Just to let you know and hope you find what will work for you.

[@mosscap_]

hey, just discovered your channel! I live a different disability and have also just gone through the pip process - sadly i had to go to tribunal but it was worth it as I won. Totally get what you said about having to list everything you struggle with. - it's awful!

[@mentalhealthwithalana]

I'm currently studying and I have chronic fatigue too. I have found spacing out and breaking up my work in little chuncks makes it less stressful and draining. I am in training to become a counsellor and am almost finished my course! So I can relate to being so close yet feeling so far away from the end

[@GeorginasJourney]

I was so thrilled when I saw you made it to your graduation 🥹☺️ I didn’t make it to mine, but did go for a photo at the end of the day 😊(which was harder than I imagined as the staff kept saying how sad it was that I missed my graduation ceremony 🥲)

[@geoff2504]

Hi Elinor. Your video is a useful way to explain the many ways that your physical restrictions hamper everyday life and I am sure that other people will associate selected aspects with their own situation. I am most interested in how you mentally conceive and deal with these problems. I was tempted to call them challenges, but that would be disingenuous. Everyone has challenges and/or problems but how we overcome them is as much a mental exercise as a physical one. If you feel inclined and whenever possible, I would love to know how you manage acceptance, understanding and mental preparation of your lifestyle. What are the biggest challenges for you, personally. Love & best wishes. Jeff

[@Maycat133]

Thanks for this video. Your explanation of your ‘best’ and the ‘rules changing’ is so helpful. The best thing I did for myself in ‘23 would be getting my diagnosis and reengaging with my therapist. Worst thing was thinking I was able to work 33 hours over 4 days 🫠 we move!

[@EmsJ1976]

Thank you for this video. I can relate so much and have definitely “Boggled” my rules recently. xXx

[@Dimich1993]

Since I mentioned ME/CFS and CIRS in my profiles, recruiters virtually disappeared - so I wouldn't recommend doing that🤷😁

[@HannahEliseMcNabb]

I had extremely mild fatigue when I was a kid and teenager (8-18). My fatigue is now extremely severe even with certain medications. It changed in 2020 and has been gradually worsening since then. I wasn’t even able to handle working even when mostly healthy, I can’t handle volunteering I tried once and was exhausted 30 mins or less in when I was much healthier than this.. and when I was mostly healthy, I would work 3 hour shifts come home barely able to walk my feet would hurt so bad after 30 mins and e especially an hour or more on them, and I’d feel exhausted, and this is when I was literally healthy. And had a different job as a 18 yr old and I had to quit that one (quit the other one too). Because I’d have to walk around a lot and also bend and I’d have so much Pain especially back pain after. Which makes sense now because i have a herniated disc l5-s1, facet arthritis l3-s1, worst l5-s1, and cervical spine bulging discs 3 of em c4-c6, stenosis in cervical spine c4-c5. Due to Ehlers Danlos. Have applied to ssi (I’m in the us) 3 times and been denied even though I legit can barely bathe or shower even having help and definitely can’t shower standing. Denied 3 times, lol. Use a wheelchair for even 15 feet of walking a lot of the time & I got a lawyer 4 or 5 months ago to help keep get it and it’s gonna be at least the end of march before I do if even then

[@Jules-zw7iu]

Anyone else struggling to make face-to-face friendships with other disabled young people? Any suggestions how to do that??

[@anneyfrancis701]

❤️

[@frankienixon8413]

I’m epileptic and the exstream tiredness that comes with is debilitating me recently. I don’t know weather I should invest in any walking aids because I’m still very nervous about accepting it and I also don’t know wich aid would be helpful

[@emilyvbr1878]

I would love to hear about streamlining! I'm trying to do the same

[@mranch5763]

If volunteering is something really important to you (and you have the mental capability for it), you could seek out volunteering online. Some of the stuff is more skills based (ex. helping conduct mock interviews, translation) and some of it is more menial (ex. identifying/tagging animals in field camera footage).

[@Jules-zw7iu]

Thanks for suggesting tagging animals in field camera footage! I'll have a look into that. I find it so hard to find meaningful and ACCESSIBLE ways to volunteer with a disability (ME/CFS in my case). I also can't find ANY clubs I could go to where I can meet people in their 20s or 30s. Would love to make face-to-face friendships with young disabled people but this seems impossible as I have no idea how to find them. Anyone else relate to this? Any suggestions welcome.