ME/CFS Severity Spectrum (shortened)

[@fight4me747]

Full Version found here➡ kzbin.info/www/bejne/nHOaqoV-j7yXbck

[@kbear2478]

🥀thanks hope u r ok J.🥀

[@lifewithspirit323]

Hi, y’all!❤I am moderate. I leave the house once to twice a week to run errands. Any and everything I do takes effort! I have my groceries delivered, and may do one thing to check off my list daily, like wash or fold clothes, wash dishes, clean my floors, or make a KZbin video. But most of the time I am resting.

[@truemecfsuncensored1022]

Until a person experiences this condition for themselves, they truly can never fully appreciate the uniqueness of (ME). Great video as always.

[@fight4me747]

so true, even with the best intentions, they will never fully understand

[@AnyOtherNamePlease]

I'm in the moderate to severe group, unfortunately it's gotten worse over the last few years, and it scares me what will happen when my father is no longer around. I just hope they make progress in diagnostics and treatment. Maybe - harah as it sounds - Long Covid was a benefit for people like us because it showed a lot of people what it's like to be this debilitated without any tests that can back up your claim.

[@fight4me747]

Have you researched LDN?

[@donnahall104]

VERY SCARY.. Just hoping they don't throw us under that Mack Truck chasing that covid vaccine 😂

[@kbear2478]

🥀😢Severe there are no words only heartache & tears ,tried EVERYTHING.Thanks Johnny😢🥀

[@bernadettebrown1852]

im on the moderate side. i cant work anymore, in fact going shopping is overwhelming.

[@EarthAngelPreparedness]

Same here. I am working on getting a person in to help me with shopping, laundry, cleaning and cooking. I have a lot of trouble. My mom or my close friend does my grocery shopping right now. Once a month I try to go to get a bag or two of items. If I can.

[@donnawiseman3686]

Same here. Having to wear ear muffs etc at home or in public when having my flare ups. Im turning 60 this October i have been unwell over 20 years. The fatigue has impacted my life bigtime

[@lindasnyder2774]

Your assessment is pretty spot on. Thanks for the information and help in understanding what’s happening to me. I have been in denial a long time. 🤦🏻‍♀️👍🎈

[@MissBlueEyeliner]

It always makes me sad when I tell people that my ME is, on average, ‘moderate’ these days because they can’t believe that being housebound 95% of the time with no school/work/socialising etc could be considered moderate. People besides my mom haven’t seen me when I’ve dipped into the ‘severe’ territory for stretches of time that blur together. Everyday I think of all the very severe people laying in their dark rooms, devoid of light and sound with feeding tubes and I know that they’re invisible to the world. It’s so sad. What other disease was be considered ‘mild-moderate’ when it has stolen your life from you?

[@TraceyBarracloughInspiration]

I’m on the milder end I’m told, so I do feel luckier than most. It’s still totally brutal though; but it’s not lost on me that it could be so much worse. Thank you as always 🧡

[@chihuahuapixieprincess2482]

It's bizarre that people have a problem with the spectrum of ME because virtually all illnesses have a spectrum - we saw that daily on the news with Covid, we know depression can be SAD to suicidal. Every day I'm thankful I'm Moderate and not Severe 🙏. When I was younger I worked P/T with mild/moderate.

[@EarthAngelPreparedness]

I am definitely moderate to severe. Sadly.

[@c-p1976]

Same. It was mild for many years and then turned to moderate & sometimes severe. It's the worst.

[@evelisisdavis7242]

Thank you

[@gloriaanngomez3238]

I think you pretty much nailed it 👍🏻🫶🏻🕊️🕊️🕊️!!!

[@mashr52010]

I went from mild to severe in about 2 1/2 years and by the time I was moderate is when I figured out what was going on, and it wasn’t until I hit the severe stage that I got my diagnosis. I’m terrified of getting worse. It has really robbed me so much.

[@websurfer5772]

🏵🌼🏵🌼 Sorry to hear it. I wish I could say I can't relate but my situation is similar.

[@happiness6177]

Thank you.Severe...do nil only your channel of which I'm so so grateful, your my only support.No life only exist ❤😊

[@JennsCorner0]

I’m home bound and need to lay down in order to breathe better. It has ruin the quality of my life. As a stay at home homeschooling mom, it’s hard to be active with my kids. I mourn my former lifestyle, I long for those times!!! 😢

[@Sweepee-v2v]

I'm so sad for the young people who have this illness and have children to take care of. It's just so bloody awful.

[@AnnBaxter-s2l]

Low moderate Foggy weird heads the worse , house bound then, thanks for your videos, Take care

[@ATaurusGirlreads]

This was helpful 😊

[@akcharly]

Appreciate you

[@KidCity1985]

It takes me 4 days to clean my house and it used to take 1. The list of what I can't do in my daily life is very long. I quit working in 2018 and could no longer be able to. I can function enough not to be a burden. But of course my Dr suggests I exercise. I could exercise a bit but that's all, I wouldn't be able to grocery shop, cook, shower or clean.

[@donnahall104]

Funny how we never realize just how much we do, till we can't.Yes,in the same order.. Exercise 😮.His videos address alot of what CFS will take u through.

[@lifewithspirit323]

You sound like me!!

[@EarthAngelPreparedness]

Exercise is not recommended. Can actually damage us internally. Light exercise might be tolerated by some people with CFS, but I know the specialists I have spoken to say it is not recommended. Light calisthenics or yoga, maybe. Our daily, functional activities are like moderate to heavy exercise to our bodies, anyway. It takes so much out of many of us just to perform ADL'S. I always joke to my Dad that after I do 2 full loads of laundry I "feel like I just ran one of my marathons." It is no joke, really. I am in bed the next day with muscle aches, nausea and crushing fatigue. I used to run marathons before I got sick. 😞

[@KidCity1985]

@@EarthAngelPreparedness I 100% agree, but you know Dr's.

[@EarthAngelPreparedness]

@@KidCity1985 Yes. They are the bad ones. Lol.

[@websurfer5772]

I can't finish watching the video because it's too upsetting for me. I'm moderate to severe - leaning more into severe now at 60. It's almost completely ruined my life but I strive to stay in a good head space anyway, which helps sometimes.

[@santipolo1963]

I am going to say something controversial here but, it's based on my fight to stay in the moderate scale. Not that I want to be here, I truly don't. Going away totally or being slight even would be my idea of heaven taking nothing away from the symptoms of 'mild'. Every day though I force myself into that day, I force routine on myself. Every day I am struggling to do the most basic tasks, even getting dressed or undressed as a huge issue for me but, I don't take the help even when offered because, to me, as a professional ex care giver (carer we call it in the UK), I dealt with folk with severe ME/CFS, quite ironic as early on I was working full time. How I got through a day also explains why I don't work now but, way too long for a comment on your channel. In short, without disclosing my own illness I would speak to them about their day. These were mainly bedbound people. Without fail they'd still somehow get a cab to a hospital appointment. I would gently ask how they manage that if they cannot care for themselves during the day and, they'd tell me that they 'have' to. Look, they may not have been representative but, to me, it seemed like they'd just given up. They had the care offered, they didn't have to pay for it (mostly not in the UK) and so, they accepted it. I then wonder, in my own life, how close am I to that? I know that this cliff edge is just one decision away. I also know that I put myself in a worse situation healthwise because I have to push myself not to rely on others (not that the help is really there consistently). I asked a specialist, we have precious few here, what is the difference between moderate and severe with this condition and she said 'choice'. You either keep fighting this or you let it win. Sure, she may have said it to help me somehow but, is it or could it be that simple? Trust me, if I could help anyone I would, I do in fact. I am most certainly not saying that those now severe should choose to be more able, that's crazy. WHat I am trying to relay through intense brain fog here is that, we all have different thresholds. I know I have a high pain theshold. I know I have lived a very complex and difficult life where I didn't have time to be ill. I was a carer for all 4 kids as a a parent (divorced in 2000 and raised them alone) but, two of those kids are disabled, SEN. The eldest also has uncontrolled epilepsy and type 1 diabetes. He was 24/7, the eldest daughter became physically unmanagable just 7 years ago. As such, my entire adult life has been extremely hectic. So, because of that, I learned how to cope with extremes. ME/CFS is made worse by pushing through, sadly, my life rarely allows for rest days. I try to step back but still have at least one ongoing crisis to deal with relating to the now grown kids. My brain has lost the plot now, as much as I would like to have written this better, it's not happening right now. It's too long, I am waffling.

[@Aetherfield]

It’s okay… You are among friends whom understand. You’re saying that we have to push ourselves to stay in the game. It’s true, but it’s also true that we won’t recover while pushing ourselves to do that which we aren not either motivated or when we push too hard and find that we are slipping deeper into the abyss.

[@RitzRed]

Me and my two daughters,probably have Me… We all have it little different,but also similar… One thing we have in common is,we are very stubborn,and push our selfs very hard… Sometimes it’s okej… Other times it can take many weeks,before we doing well again… To all of you with Me,many hugs… It’s a very difficult disease… I read your storys,so sad… But i hope you have something good,in life too! 🤗

[@websurfer5772]

Your input is really valuable because you're the mother of two daughters with it which shows this can be multigenerational. Thanks for sharing and sorry to hear it's like this for all 3 of you.

[@RitzRed]

@@websurfer5772 Thank you 🙏

[@Truerealism747]

​@@RitzReddo you all have hypomobility my father has CFS to better than me now at 75 all his sister's have fybromyalgia adhd

[@carissafisher7514]

I just had a friend that says, "Just think about it, if you were in the wild you'd be eaten." How is that supposed to make me feel? 😢

[@fight4me747]

what a silly thing to say to someone

[@Truerealism747]

I've had that

[@johnqualls5990]

My worst symptom is sound sensitivity. I love music and love to play mandolin, but it has an advantage.

[@Anchor7]

😀😀😀

[@carissafisher7514]

Does anyone know a doctor in Colorado or one I can see via telehealth? I have been denied twice for disability. I literally sleep in a bed in my living room.