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When I was first diagnosed the nurse (from our local support group)said the people she sees getting worse are the ones that keep pushing themselves, like i was . It scared me into actually making some changes, hard as it was/is. Didn't help that my previous colleague would always say you're just tired and proceed to tell me how much more tired she was because she has kids and i don't. I'd love to be just tired!! Fatigue is completely different!
Over the years (I'm in this for twenty three years) I went from totally isolated to now still very limited, but capable of taking part in some activities and going outside my house on a daily basis. The steps you mention certainly were part of this gradual increase of energy. Other very helpful habits for me are: being grateful. Especially when I was unable to do anything, to fatigued to call anyone or receive visitors or even sit up for longer then ten minutes, it really helped to very intentionally be thankful for the good things in my life: a safe place to lay down, someone who took care of all the practical stuff like groceries, the sun shining into the window (or a curtain to shut it out if it was too bright to bear), birds singing outside my window, all the good things I could think of. Even in isolation and total breakdown of my body, it brightened up my days if I focussed on little nice things that could be a reason to enjoy. Also, I learned it was better to mourn my losses then keep trying to get better as fast as possible. We can keep dreaming but not to the point where it keeps us captive in disappointment; to me, it turned out to be better to cry about all the dreams and plans that didn't come true and let go. Who knows what the future will bring, but for now, being content and cherishing the good things gives me more positivity in life. Last but not least, it helped me to develop a strong spiritual connection. Forgotten or even rejected by most people, I focussed on being loved by God. Even though I couldn't have human company around, I was never alone and I could always talk to him, even in my mind if I was too tired to speak out loud. This provided me with unconditional love and support that carried me through the darkest days and gave me comfort when I could only cry. Because of that, I never lost hope and kept believing things would get better. And they did! I'm still on my way, it's gradual, it's slow, but seen over the years there is a lot of progress.
Thanks Esther for your suggestions, especially gratefulness and belief in God!! He has definitely been a lifeline and, without His love and encouragement, don't know where I'd be too!! Thanks so much for sharing!! God bless you and others too!! Jx ❤❤❤❤
HALLELUJAH! Wishing you a glorious day! I woke up this morning and there was no nausea, headache, lava in my knees, pins in my feet. I woke up and I don't feel bad... not that I JUST don't feel bad, I FEEL GOOD! I wish I could smear how good I feel right now all over this post, all over you, all over all of the thousands of subscribers. To what do I attribute this? Grace. I did the same things I always try to do: drink water, eat well, and so on. Last night I had refreshing sleep. Wow! When was the last time that happened? I wish I knew! I wish I had the power to create the environment that forces that result. I'd give you all the recipe. I wish I could squirt i through internet just give everyone a break that is filled with sunshine, refreshing mountain air, the perfect temperature, birds singing, squirrels fighting over sunflower seeds. SO, GUESS WHAT I'M GOING TO DO? Nothing. I'm going to sit here and revel in this moment of no pain, no frustration, no tears and hope that you get to experience it soon, too.
My biggest mistake was putting myself under intense pressure to get better. And expecting people to care. If I had been easier on myself... I wouldn't have the wisdom I have now. I've embraced being "lazy", "selfish" and "antisocial". I don't owe anybody anything and vice versa. Tbh I'm tired of trying to explain. Tired of searching for solutions. While I was focused on those things, I didn't notice life slipping by. I didn't notice how great it is to be alive! To say: I may not get better... and I'm cool with that.
Excellent video, I’m in agreement with all your points. They’re not all easy to do though. 10 years in and I still find myself feeling worthless when I have to say no. And that comes from me, my family doesn’t make me feel that way. And for people not understanding? I remind myself that prior to getting sick, I guarantee I would never have understood either. Makes it easier not to take it personally or be angry about it. And absolutely, do NOT push through a crash (and avoid one if possible). Not only will you not get better, you’ll continue to decline. Thank you so much for all your down to earth and useful videos, one of the best out there.
I really agree with keeping your symptoms to yourself, unless asked. I really try to do that, because I don’t want to be THAT person who’s always complaining about their health.😋
I complain so much. I want to be understood so much. I had a relapse and my family new nothing about it when I finally saw them, no one knew what it took for me to go to there house. No one said a word about my health.6 years in and I am bitter. As a Christian I must forgive but I am so hurt by people.
I’m so sorry you’re hurting so much. Forgiveness isn’t for their sake - it heals you. Could you ask a couple of genuinely trustworthy people in your church community to pray with you and support you through the forgiveness process. Or attend some Sozo prayer ministry sessions? Bitterness is so depleting our strength. I pray you get the support and love you need. 🙏🏽✝️💐
Thanks for taking the time to post your helpful tips. Due to me/cfs being such a lonely journey it helps to hear from others who know exactly what you are struggling with. I’m guilty of people pleasing and sometimes wanting to share and as you say it almost always leads to disappointment and a sense of even more isolation. Your posts are like a warm hug. Thank you.
Thank you. This is very helpful. Especially jumping right to the five points. The one point that resonates the most for me is forgiving myself. I blamed me for doing this to myself. I’ve been so ashamed. I appreciate you providing this video.
Thank you so much for your videos!! You definitely inspire me to be more positive regarding this illness. I Overshare often in attempt to help others to understand, but THEY WON’T… ever 🥺. Bless their hearts, though. They really do try! Hell, I don’t really even understand this illness, and I’ve had it for almost 20 years myself lol! It’s very complicated and complex. I’m positive that if I wasn’t the sick one, I wouldn’t understand either. I definitely need to work on forgiving them for not being able to understand. As well as forgiving myself for being ill. I didn’t choose this. 🤗❤️
Your videos help me so much as you have ME/CFS and you know how it is! Every point is spot on! When you said how long you've had this illness I felt awful for you, I'm so sorry. I am 4 years along with other illnesses too and it's certainly a physical and emotional journey. I love your videos and wish I had you to listen to a few years back! My strategies...... 1. My home, my life is set up for me. 2. I let go of my old life. 3. I listen to my body and mind. 4. I'm kind to myself as I am the one who is very unwell and only I understand myself. Thank you xxxx
Forgiveness for others... not always. "If someone shows you who they are, believe them" said Maya Angelou. I've had ME/CFS for 16 years, and the horrible person that is supposedly my mother, still talks to me like I'm faking it. She's always been nasty, my condition only brought out her true colors even more. I neither forgive nor hate, I simply ignore.
One of my favorite videos to day, and I've been binging! John, you are an inspiration and insightful. THANK YOU not just for sharing your vast amount of knowledge but for your gracious and humble manner, your kind nature, your desire to bring comfort to others. You are an inspiration. It is inspiring to see someone who uses his limited energy to help me, a stranger without a face, to bring peace and comfort into a place where there is chaos and criticism.
it took me a long time to learn to say no more, and to only socialize with people that get that I need to rest frequently. after making that change, I crash a little less often. thanks for another informative video. greetings from Norway :)
Thank you for this wise advice 🙏 in my experience no one gets it 🥺 even family & friends & I actually realised after a decade of trying to explain, that it’s better for me to not mention it any more.
I totally agree with every thing you ate saying but I am in a situation that works against my cfs I was pushed into being a caregiver for my bed bound mother I constantly live with PEM needless to say there is nothing left of me I am trapped because of finances and and a toxic sister who doesn't believe I am sick and holds it over my head God how I wish that I could be free to take care of myself I live every day in a push and crash cycle
Linked to your comments but might help some... Buy an oximeter that aslo shows pulse rate. When you have to do something that will tire you. Cutting the grass? Nobody else is going to do it. Never start until your pulse rate is low. Then find your acceptable pulse rate to start again. THat means I take rests when my heart starts to race. I don't start again until it's back down to that lower level. Mine is about 80-85. When I start again it quickly jumps to about 120. Stop...back in the chair and wait. This makes the crash that follows more bearable and quite short. Takes a long time to finish the job but it's worth it.
This is a great idea. I have a FitBit that keeps me on track with my heart rate. I haven't finetuned my numbers to see where I need to rest, but I will put that on my list of things to do. Thank you!
Thank you for your posts. What works for me: not wasting energy trying to convince anyone of anything. It truly is a weight off one's shoulders when one realizes that and lets that sHiT go. Secondly, learning to say no and doing it completely neutrally (without aggression, apologizing etc) You will see who your real friends are, i. e. whos there for you and whos there just to take advantage. Not nice necessarely but neither is exhaustion. Allowing yourself to rest without guilt and realizing deep rest is actually hard work.. boring and depression inducing. But still necessary. I have sleep issues still but when they were really bad i realized i had to basically bed rest for two days before i could sleep. Counterintuitive for some, worked for me to calm my nervous system after overexertion. Dont exercise. This exercise craze wasnt even a thing before the 70-80s lol. If you have pem then dont do it. A person will naturally become more active when the body allows it. Before that its better to rest and if able do other things (non-physical work related, study, some chores maybe) I like doing yoga asanas when i can but i hate when im tired, theres no point if i feel worse after. Little bit of stretching, deep breaths and fresh air (either short walk or from the window) is good maintanance. I personally love the sauna but its no good when too weak. Listening to dhamma talks or other smart content. This is pretty self-evident. No superficial motivational speeches or crazy pseudo-spiritual stuff though. i like the buddhists from a forest monastery in australia (ajahn brahm, venerable canda) What doesnt work: doing the opposite. I banged my head against a wall with the exercise stuff for years. And the sleep stuff too which the exercise always made worse. Being smart about it and nowadays i can actually handle much more exercise. But its definitely not something to stress about because it will kick your butt if you get cocky with it 😅 im just learning to say no and i practisebit frequently, really empowering in the long run.
you r ideas here are really good and speak to me personally. i'm having a hard time with that pendulum swing - i was never allowed to express myself in my family and that silence flipped straight to a roar when i got super sick. i now know that that energy is draining the shit out of me. i like what you said about exercise - have a migraine right now so i'm not looking at keys in case this is a mess! The videos. Yes, there is one thing that helps - i have really bad breathing troubles and i watch a particular monks instructions on Qi Gong self acupressure. it's not excerrsie - many of these things you could do in bed. And they DO help . i had a pain specialist years ago that could make my pain and muscle knots leave - by acupuncture and magnesium . he's gone now sadly.
Teach it in ways someone can get..."a severe energy limiting(ELC) condition "I have energy at the cellular level less than 5% of usual" "I do not have full blood volume to ensure good nutrients and oxygenation and removal of waste...up to 20-50% missing blood volume" " I have inadequate blood volume that slumps to the bottom edges of my body" " I am so weak and in pain with a body that is malfunctioning 24/7" All our talking of tiredness is not remotely explanatory
I've recently subscribed to your RU-vid channel & just want to say 'Thank You'. I've had ME/CFS for 18 yrs & just like everyone with this horrible thing, I get so frustrated with 'it' & when people don't understand how I feel but I really must try not to worry about other people & think of myself xx
Belive or not i exactly experienced the same situation and learned those things very quickly if i wanted to feel better 😌 .... and yes i want sometime to scream it out of my chest , trying to get rid of the weight that it choke my brain..... i explain it ( rarely ) ant the oly thing that i see is that weird look meaning 🤔 😳 oookkk soo ...... and you're like..... nothing never mind !! Would be nice to talk with u sometime and share more knowledge and useful solutions for it !! Take care Man
Thank you for this video❤️ i have ME, 11 years. I am in a PEM now and its really hard! I have 2 kids and im struggling to be the mom i wanna be. They dont understand me so well eather, even they are 15 and 11 years old. I am severe and on good days moderate.
number 2. - i think it's why we ended up with ME in the first place. before i got 'this sick' - it was something, pneumonia every fall , random things BVP - now, i'm like well. NO. I have one friend who actually gets it. - and he didn't need to be convinced in the first place.
I had cancer surgery beginning of October and during the healing I had NO symptoms, a whole month..it was weird. It was scary for sure but I’ve never felt better. But since November I’ve been in huge flares, the PEM is out of control. Not sure how to get it under control, trying everything 😢
Hi, I find those things Ive also learnt but it is hard trying to break habits of a lifetime isnt it? Harder said than done but vital to get to grips with. Unfortunately, our societal norms make us more ill.
i see meditation or mindfulness as a tool to achieve at least 2 items from your list. do you use any of them? what about neuroplasticity? did you try any of the programs available: Gupta, ANS ... ?
Unfortunately this video is quieter than all the other videos for some people. All I can recommend is increasing the volume within the youtube app/site
I'm not Gunna forgive others for verbally abusing me for what I go through. Ok, if you don't understand, back off or ask me some questions about how I feel. The selfishness of some people astounds me!
I agree, but at the end of the day, holding on to that anger will mostly hurt you. Not them. People are so selfish and ignorant to things its astounding.
@@fight4me747 Yup, you are right. The reason I made this comment is cause it's eating me up how others treat me. I need to let it go...But it's hard... especially when it's family.
Forgiveness is NOT saying that it's ok that someone hurt you. It's never ok for someone to hurt you. Forgiveness is letting go of the feeling that you personally want to make them pay, personal revenge. Holding on to those negative feelings uses up a lot of energy that you need to use for healing.
@@fight4me747 I hope you can figure how to fix the sound too. I scrolled through your video to find some of the points you were making. It would have saved me a lot of trouble to have gotten that advice a couple of decades ago. I've been slowly coming to the same realizations about how we can't just explain ME or Fibro and how they disable us. (I have both.) You sure do uncover covert narcissists quickly with this situation though which can be a time saver and a heart saver.
