Working a Job if You Have CFS | CHRONIC FATIGUE SYNDROME
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- Опубліковано 1 гру 2022
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Are you struggling to work a job because of Chronic Fatigue Syndrome (CFS)? You're not alone. Millions of people around the world are living with CFS, and many of them are working while managing their symptoms.
In this video, we'll share tips on how to work a job if you have CFS. We'll also share inspiring stories from people who have managed to do just that. Keep watching for helpful advice and inspiration!
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Tags: Cns fatigue, cns burnout, nervous system burnout, nervous system fatigue, cns exhaustion, chronic fatigue, cfs, chronic fatigue syndrome, bedridden, housebound, adrenal fatigue, chronic fatigue syndrome treatment, cfs symptoms, cfs recovery, cfs health, chronic pain, chronic pain syndrome, chronic pain explained, chronic pain meditation, post-viral fatigue syndrome, long covid, covid long hauler
#cfs #cfsrecovery #cfsme #bedridden #anxiety #somaticsymptoms #somatic #panicdisorder #panicattacks #chronicpain #chronicsymptoms #longcovid #postviralfatigue
DISCLAIMER: I am not a medical doctor or therapist. I am sharing my own experience and research. My video content is for information and educational purposes only. Please consult with your medical professional.
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I've had CFS for over 10 years. Never worked. I've progressed form being bed-bound and not eating (literally not enough energy to eat) to being able to cook for myself and even shop.
I really want to be able to start working. The fear of being unreliable or unable to make deadlines is high. It'd really mean a lot if I can overcome my issues especially so I don't have to rely on my aging family. My partner is LDR and I want to be able to support her visiting.
Didn't help that I was misdiagnosed with depression and kept being told to do more, do more, do more. Told to exercise, get out more, go for more walks etc.
Luckily now I have a specialist. Anyway. Just ranting for anyone in similar positions. You're not alone
Your comment made me realize that if doing "more" either a) doesn't help or b) makes us worse, it's not depression! Thanks.
@@maura6487 Np! It really blew my mind having it put that way to me. Ofc you can have depression and CFS at the same time though :D
Wow 10 years hang in there your NOT alone i cant eat when tired too
@@Phantomstories1831 Thank you c:
Hey all I can say is props to you for even having a girlfriend. I know what you mean by the concerns from this post. I'm going on 8 years with this issue.
Truly never linked my work-a-holic ways to getting hit with 2 years of long haul covid. Brain fog, dizzy, rocking feeling, fatigue, just OFF. I worked 2 jobs at an intense overachiever and when I feel better I go back in FULL FORCE and aways end up feeling like crap again. I'm in that cycle now. I just can't stop comparing myself to other young entrepreneurs who can do it all :(
I totally get where you're coming from. However, it's really essential to listen to your body and find a balance that works for you. Remember, comparing yourself to others won't help your healing journey. Focus on what's best for your well-being and take it one step at a time. You've got this! 😊
The biggest thing I took away from this video, is to do the things you enjoy, not for any selfish reasons, but just to pull you out of the sympathetic and into the parasympathetic. Sucks my only passion is writing non fiction, and I have no time between full time retail and fatigue to get my foot in the author's door.
HOWEVER! I've only this week realized I've been suffering from mecfs for the past 3 years, and I officially have a diagnosis, and a referral to the closest thing to a specialist we have in my city! Can't wait to get some fukken help, cuz f me if I have enough functioning braincells to do it alone. This community is amazing, gone from literal mass histaria to a treatable disease because of yall!
I'm so glad it helped. We'd love to help you out more. I have to see if we can even help you first. I always recommend going through the questionnaire and if you qualify, booking a strategy call to see if you're a good fit for the program! www.cfsrecovery.co/apply. Looking forward to connecting with you! 😊
@@cfsrecovery I indeed completed the questionnaire, but I have no money to spare... Tired and broke, haha
I'm a medical student with CFS, and find it so hard. I want to exercise and go gym, but especially emotional stressors at uni just really exhaust me. Feel like its so hard.
I totally understand 👍 May I ask what symptoms you may be struggling with ATM?
@@cfsrecovery trouble reading, focusing. Brain fog, a lot of lethargy especially post exercise. Emotionally drained quite easily. Been hard to cook and be active, and studying is really hard as I have huge amounts of organisation to do.
I don’t feel it’s possible for me to stop working full time. However, I need to say no to overtime (even if I want the extra money), as I’ve been getting a lot worse lately. I need more time to rest.
Yes you absolutely do. Overworking yourself won't help a thing!
There's no possible way I could have stopped working without losing everything when I had long covid, but I think being on my feet at work was actually healing over time. My main symptoms were POTS, fatigue and panic attacks, but each work day I would have terrible symptoms for 1 to 2 hours then my body would "regulate" and I'd feel normal again until the end of the work day. I feel like If I'd been able to be off of work I would have become so deconditioned and paralyzed by fear that I wouldn't have recovered (it took less than 6 months to get back to normal). So many people stress the obvious importance of rest but it's also recognized that exercise is beneficial with POTS and it certainly has been for me. Above all there seems to be some kind of brain rewiring that takes place once you get some positive momentum, but that momentum isn't possible for people who spend time in bed reading long covid forums (like I did early on).
It just makes logical sense to listen to those who have recovered rather than those who are still sick.
That might've worked for you but my body doesn't "regulate". When I crash I crash totally & my body forces me to go to sleep. There is no other option. I've crashed on jobs before & I had to try to get some sleep in my car because I couldn't drive myself home. And I'm not the kind of person that can simply fall asleep anywhere. It's extremely difficult for me to fall asleep anywhere but in my own bed. I sat there for a couple hours in misery until I finally fell asleep.
@@sci-fi.tsunami so sorry to hear of yr ill 🤒 health, and I wish u a full recovery 🙏 in yr body's own time (DO NOT LISTEN) to anybody but yrself .it's yr body's way of saying it needs help and time to heal so LISTEN to that ,just because we look the same dose not mean that we are. Be kind to u 💛 and the rest will follow. As they say time is a great healer .love and light to u. ❤🌈
The thing is if you dont listen to your body and rest it will give up and force you to rest. The symptoms do not go away by ignoring them. That is my view anyway. There is a bigger picture in all this too. Society needs to change the mindset that if you cant work and cabpnnot contribute to the economy you are worthless. My maxim has always been 'I work to live' not 'live to work'.
This is what happened to me! You are right.
Hi there, I wish I'd known when I could work that I had me/CFS and how to recover too. My doctor kept fobbing me off until I literally couldn't stand or string a sentence. Maybe we are all too good at managing more than we are able for. I've found the videos really good not only to learn concepts but just to hear someone knows just what you've been through. The minute I was taken seriously and diagnosed all the fear and stress of searching left my body. Only up from here! Only in a few weeks I am beginining to feel peace in my body that I haven't felt in years and had given up hope I would ever!! Keep up the good work ☺️
Thank you for sharing. I'm quitting my job next month to recover from CFS, burnout and health issues from prolonged stress and trauma. Not nearly as bad as you described having to be in a wheelchair etc, but enough to take the risk of quitting my job. This is really encouraging and helps me not feel so alone. I appreciate you showing that recovery is possible!
Recovery is possible! You got this! 💪
Thank you so much for this video. If I put aside the guilt and the persistence and work ethic earlier I totally agree I wouldn't have been so bad. Burnout at work + covid = month 9 of long covid/cfs.
You’re very welcome 😊
I work full time with CFS, symptoms on and off. But i cannot see myself staying home doing nothing... i would definitely be in a terrible state emotionally and financially
I understand. You got this! 💪
They dont give you enough to live on SSI
Unfortunately some places they don't. Try to work just the hours you need to live a okay life and focus more on recovery. As you know, without health, you really got nothing!
No they definitely do not. I earned enough to go from SSI to SSDI and I still don't have enough to live on. I was working part time as a substitute teacher. I'm hoping to get well enough to do that again part time. But it will take some time.
I don’t know how I’ll recover without my income and don’t know how I’ll recover continuing to work. Catch 22.
I will recover though. One day.
Deffo. His "advice" would kill me. I have a mortgage to pay. It's all well and good for the nuclear family who can afford to have one person not work. For those of us on our own no f*cling way. Also can't work my profession part time. And to those morons who say "wha change profession" fuck you
No I pay two-thirds of my SSI income in rent. I have to back to work or face eviction.
Thank you for your video, so helpful. Thank you 🙏🏽
You are so welcome! Glad it was helpful 😊
Great tip about blue light blocking glasses
Glad it was helpful!
This really spoke to me and validated what I’ve been struggling with. Thank you for this!
I'm so glad this resonated with you! 😌
Hi Miguel, if I only knew before how bad Cfs can go I wouldn’t have done three jobs at the time!
I’m at the point now where I reintroduced a little bit of working (only one lesson per week! 1 hour in total!) and I was actually wondering how much I can expand my capacity..
Thank you so much, I really appreciate your tips
I had to stop working in my 50s due to CFS. I worked term time and couldnt manage. I had my hours reduced but still coukdnt cope. It was a scary time as I lived alone. I had to be very careful with my money anyway. In the end my contract was terminated and I was lucky enough to get Medical Retirement two years later with a very small pension. I still had the financial stress but without the struggle of working.I have moderate CFS and believe that unless you have very mild CFS, Long Covid you will really struggle to work. The only way I could continue working was to have very flexible hours, be able to finish work when I felt worse and had a bed available for me to lie down! I would rather cope with this illness and not working without having the stress and worry of work. I couldnt even commit to doing very light voluntary work never mind paid employment. I am now 12 years older and manage my condition the best I can. I feel sorry for others who have to carry on. Please take care of yourselves.
Thank you for sharing!
This is really encouraging because although I'm currently off on medical leave for a month, I have the wfh piece, mildly interested/enjoyable piece, when going back will be part time piece with short term disability which can hopefully help w wage replacement and ADA, so hopefully hours can be flexible
I hope those pieces work to help you with the recovery journey Murphy!
Wow this is a good video
Right?
I used to be in steel fab working with my back, it was my passion 5 years of dealing with CFS I rediscovered my love of the ocean and found a part time job working on a ferry. I won't feed anyone bullshit I still shake and experience symptoms but there was a point when I didn't think I could and to anyone in that place you can. It will be hard and suck but that's life ups and downs smiles and frowns. Just remember without the bad the good wouldn't feel as sweet and remember I'm routing fer ya!
Good for you! Thank you!
Thank you
You're welcome 😊
I have no choice but to work full time. I live alone with a mortgage. I'm very symptomatic at work but because I'm the manager I can chose which tasks suit how I feel. It does wipe me out and I'm home and in bed early but I don't have any choice ATM. Thanks for the tips
I understand. You got this! 💪
@@cfsrecoveryI sure have . Im loads better than last year. I had a massive crash which left me housebound and off work for a month. Onwards and upwards
I’m surprised you don’t have 250,000 subscribers.
Our community is still growing. We will get there soon. Thanks
I've felt guilty doing pleasurable activities the last few months (first time in my entire life), but thought these activities would help the shift into parasympathetic mode, or let the vagus nerve heal along with a regimen of B vitamins.
Maybe that guilt/anxiety is a sign that some of us are sensitive and were prone to developing this problem in the first place? (The actual trigger was probably an exotic virus, in my case.)
Thanks again for these videos. Would enroll in the program if I had the funds! :)
You’re very welcome 😊
Thankfully, I have been able to reduce to 3 days a week, but even so I don't always manage that.
Doing what is manageable for you is very important for your journey!
The clicking at 14:26 is a little loud.
Thank you for sharing your story and offering support.
Thanks for the feedback 🙂
I substitute teach. It's not WFH but it is very flexible part time, and you are needed. But it depends on where you are physically. I have fibromyalgia and post exertion malaise really bad. I also had 3 back surgeries which is where it all started.
But subbing might be a good steppingstone. Unfortunately, I'm struggling to even do that. But for those looking for part-time flexible work to start working again, it might be worth looking into. My goal is to get well enough to sub 2-3 days a week again.
I hear you, and I understand where you are coming from.
However, it's very important to consider your own limitations and listen to your body's needs. If you find that even subbing is currently challenging for you due to the fibromyalgia and post-exertion malaise, it may be beneficial to prioritize your health and focus on your recovery journey. Gradually working towards your goal of subbing 2-3 days a week is a positive aspiration, but it's essential to prioritize self-care and pacing yourself appropriately. Best wishes!
I couldn't work for some yeats but found ways to make passive income. I can work now - mainly from the couch/bed. I have a desk, but don't use it much but to look normal on Zoom calls.
Walking is easier than sitting or standing. I haven't figured out how to sit or stand still for a significant amount of time with the hyperPOTS
I've had viruses back to back to back recently and now have Influenza A and feel guiilty that I am not getting much done.
How did you make your passive income?
I’m only working 12hrs a week, I have CFS and fibromyalgia and I feel like I have hit a wall. I sleep most of my time away from work, my body is sore and muscles are so exhausted I can barely walk for 5-10min and need a stick to help me. My body trembles constantly and I can barely think or remember things. I don’t know how to begin my recovery journey and leave my job so I can get better. I live alone but my mum helps me with housework. I’m scared to have no money even though I am not earning much currently.
Please check this link. I hope it helps!
ua-cam.com/video/nWvsSpNqjjY/v-deo.htmlsi=AHyvYMjAV5l_ifuF
I can’t listen to longer videos. Can you please get to the point faster and add bullet points it just pulls more energy out listening to rambling on and on
Thanks for the idea! 🙌
I work 28 hours a week averaging 7500 steps. Symptoms only start when I pick up exercise.
I totally understand 👍 May I ask what symptoms you may be struggling with ATM?
@cfsrecovery I took a couple of days bedrest and am now sleeping ok again. I'm picking up my zone 1 'cardio' again and 2 weight training sessions per week. As long as I have good Garmin sleep scores I'm doing OK. Today no symptoms. I ditched the running and HIIT. every time i don't listen to my watch, symptoms come back. Because I am an Atype personality lol, I put my watch in charge and not myself. This watch even gives a training 'burden' score and I dialed back from trying to keep a score of 600 to a score of 200 which is a lot easier to maintain.
During the day I regularly check my stress score which I now keep under 30 on days off. At work my stress scores sky rocket to 80, so on days off I have to compensate. I should make a UA-cam video for you, because I seriously agree with your approach for 90%, but not with the 'throw away your watch' part. And I can show you exactly how and why. I think that the watch could be a good part of your program if you do it right.
It sounds more like severe burnout and your body wanted you to stop and re energize.
I appreciate the insight 😊
how do I know what amount of work is appropriate? I just stepped up from 50 % to 75% but I feel really tired now and getting anxiety about going to work, since it takes alot of energy to get there, stay focused etc. So then when I come home I just wanna sleep. When I worked 50% it felt more managable, so how to I know when I'm ready to step up in working hours?
Just the way you explained it is exactly how you know the appropriate amount of work for you. No one size fits all. If it's only the 50% you can handle without crashing, then stick to 50%. Don't try to increase unless you are absolutely at the point you feel you can handle it. Best wishes.
What about feeling symptoms and cannot pull back ,, any suggessions?
Please check this video out: ua-cam.com/video/I6HE8WtI2Z4/v-deo.htmlsi=AFykdHZPm1SYmoqj
I stopped working and it made me actually worse, I focused all the time on the symptoms and lost all my confidence in myself.
I totally understand. May I ask what symptoms you may be struggling with ATM?
@@cfsrecovery hard to tell as I have a strong symptom imperative. My symptoms change daily, sometimes even within hours with symptom-free periods in between. I was already quite well and then experienced a setback. The most debilitating ones are currently the occasional weakness in my legs and strong anxiety. But tbh I do not think it really matters what kind of symptom you have, the nervous system can create anything as long as it fulfills its purpose to scare and protect you.
This what happened to me after I had covid 3times my brain doesn’t work always forget3x
I understand. How long have you been experiencing this?
@@cfsrecovery i suffered almost 1year from now. 5 months left my company contract finish and i will stop work need to take rest
What about a work from home job
You still have to use mental energy which brings on the same symptoms as physically going into work.