ME/CFS brings loss. Loss must be grieved. Often this is misinterpreted as self pity and is shamed by others. This misunderstanding and inappropriate judgment can cause great difficulty to someone who is struggling to accept & adjust to much loss. Frequently we lose not only our energy and general health, but with that goes jobs, careers, income, social involvement, hobbies, various activities, friendships, standard of living, the excitement of making plans and joy of anticipation, and an overall. Loss of ones sense of self. This is trauma by definition.

@fight4me747

3 жыл бұрын

Very well said. Penelope.

@alysmarcus7747

Жыл бұрын

yup, you nailed it. i'm getting really tired of hearing how someone else experienced 'something similar' like being sick is a contest . i'm a bloody perfectionist -- if i could control this you bet i would! i've lost everything in a very short period of time. the lockdowns were a piece of cake, now the alone in this is mind crushing. all of the hobbies, music, painting everything i did is gone. i have 0 purpose in life or reason to be here. I survived alot of trauma in much of my life - only to be landed with this sentence.

@visionvixxen

Жыл бұрын

True. It’s so much that it makes the fight to live SO HARD at least when you’re a sleepy. IFyoucansleep, there is no tortutre

@alysmarcus7747

Жыл бұрын

yup, and i wonder how many of us came from trauma - (childhood) just to have this laid upon us. The hyperviligent brain says it all

@deiadraper6358

24 күн бұрын

​@@alysmarcus7747my goodness so true what I tell everybody I had a good life a lot of good things in life for other people and myself now I don't even care to wash my hair or take a shower I'm always sick the damn doctors get you a cocktail meds that work for two or three years and then all of a sudden they cut you down and then you get back down again you always have a couple hours a day of something good but then you're not sick so you sitting and enjoy the fact that you're not sick and debilitated anymore and then you still have that don't get anything accomplished and it's just a three-ring circus with the doctors the meds the the sickness and it's just ridiculous and I admit I have it and I need for people to know that I was supposed to get a pain shot at my doctor back in November of 2022 and they literally gave me a covid shot and I have not been the same since I know it was a covid shot is I am allergic to vaccines back in 2012 I got a vaccine in my left arm and could not move it for a year even had a lawyer take my case and then a year after that I got a letter and stated that it was not nothing due to my fault or anything to do with prior medical records but he is no longer trying to take or even able to take vaccine of any kind lawsuits because I know he was stopped by the government he was even on TV go on and on about this me and not to mention before that I had throat cancer and I cancer and went through chemo and radiation and surgeries and two years of Prednisone forced to go on disability I really want many prayers and many blessings for people that are gone through this and I really think this person for bringing it up but no matter what I do I have tried everything I am a retired hairdresser after 57 years or should I say I was forced to go on disability due to to the thyroid cancer and then I turn around and I think to myself I am blessed I built myself a house I'm laying in my bed I have my chihuahua I can talk I can still see things to for eye surgeries the doctors have ruined my looks can't be in the beauty business anymore I am still blessed I built myself a house I have my 1400 Social Security I have friends but then to add to all this I've lost two of my children cancer and one of them through negligent malice not enough money to fight the courts and people need to be aware that this is serious and the doctors just don't give two squirts of house yet or have enough sense to really know about it or the sense of a billy goat to know how to get the time legs up in order to take care of us and then when they do the pharmaceutical companies change the formula of our meds and one month they might work and the next month they're nothing but placebos not only that you try and go the vitamin regimen yeah I did that for 15 years now after covid you got everybody in the world at with all these vitamins saying the ones that you've been taking for 15 years are no good because you were brainwashed so you go and you pay $50 for a new vitamin and oh for sure the first bottle works and oh yeah they want to make their money by making you sign up for automatic withdrawal so that you can get them every 3 months and then their prices go up and then you got a lot of money coming out of your bank account and then what happens they're automatically withdrawn and then the prices go up and then the banks end up charging your overdraft fees Amazon start sending you the wrong products and then it takes you months to fight with them to get your money back oh yeah the system is nothing but a bunch of b******* with us sick people with this problem yes I'm betting yes I'm irritating yes I'm angry I have worked on my life no man has put a roof over my head clothes on my back not even my husband and now I'm here in bed not taking my meds that really work every other day if they're not placebos every month from the pharmacy and the pharmaceutical company I'm taking him every other day because the doctors cut you down on them and we don't even know the meds that they're prescribing us and we didn't even ask for what they prescribed us and then you got to fight insurance companies for prior authorization the girls in the doctor's office are overloaded with these prior authorizations and it's just a three-ring circus with the doctors the pharmaceutical company and the doctors not able to prescribe them as then you got to go to a psychology in order to get the amount of meds you need because they Cut You Down every other month eye doctor literally told me where were afraid you're going to lose your mind due to these meds bulshit I'm going to lose my mind if I don't get them he says you're you're old you can't be taking these meds and I said it fun too damn old for these meds it's because you it's your fault because I am this old was it first this doctor saved my life from all the other doctors that tried to kill me with chemo now I can't afford to pay for a program in order for me to write this book and be outspoken as I can be you lose 14 friends family members in one year and a half you lose your eyesight you lose your job and then you get this sick you're not allowed to be agitated you're not allowed to be over spoken you're not allowed to say it's other people's thoughts it is other people's faults due to the food that they're poisonous with I wish I could digress and in the years since I've lost my first child in 2013 and then lost my second child in 2015 and then lost my third child in 2023 I'm not supposed to be aggravated or agitated according to so many psychiatrists on KZread that wants you to spend money in order to go to zoom so they can analyze you I don't need no psychiatrist to analyze me

thankyou so much for speaking about this. it is so frustrating to see these 'i cured myself' with brain training things . it still says - you are responsible for being sick. Don't think i haven't tried everything under the sun to get well.

@bas3374

Жыл бұрын

Richtig 👍🙁

Have you heard about this study? I signed up for it as I've been struggling with my.e/cfs for around 8 years now. I used to be so active. I had more energy at 38 than most teenagers these days. I'm just starting to slowly recover from a crash. Although lately I feel my condition is getting worse not better. 😢 I feel trapped. On my good days my mind thinks about all the things I really want to do. On a bad day I can't even think about doing anything. Just the thought of doing anything makes me feel exhausted. The Brain fog is so bad I thought I was starting to loose the plot. I didnt know brain fog could entail confusion etc. I remember the time I forgot my address. I didnt know it was related to m.e. infact I didn't know what symptoms were related as when I was diagnosed I was told what was wrong and to go home that was it. I've now started venturing on learning about my condition. I think for years I just sat in denial and kept trying to push myself and then for weeks lay in bed, even rolling over in bed, sitting up or going to the bathroom felt like a real tough task. Your video randomly popped up, not something I searched for either. I'm learning that I'm not lazy despite getting a diagnosis, I still felt lazy. Here's the website, It's a study they are doing for m.e/cfs www.decodeme.org.uk/portal/ Thank you for doing these videos. I also had covid and I feel its made me worse . Somethings I used to do whilst having this I just cant do anymore. I feel trapped in my own body. I have forgotten the last time I went out despite having a mobility scooter. 😢 Hoping to hear some good news on how we can all recover from this horrible illness. God bless the whole m.e /cfs Community.

Thank you for this video! I want to add to your excellent points about the pressure to exercise… - subtle pressure from “encouragement”: I find myself feeling pressure from well meaning people who rather than actively pushing me to do something I can’t do, they subtly encourage me without realising that this can also put pressure on me (because I’m so desperate to feel normal, to ‘get my life back’ and not miss out on things). This can range from saying stuff like “I heard this podcast that talks about the benefits of exercise on fighting depression and improving mental health, we can do some gentle exercises together every day if you like, or maybe you should get into a yoga class.” I ended up trialing one PT session after all the endless messages about exercise and mental health, and stupid me completely forgetting about my body’s most fundamental limits these days being the need to aggressively pace myself - after managing to do that somewhat unconsciously for the last couple of years to the degree that I must have forgotten how bad it gets when I don’t pace. It’s now day 2 post PT session and I am in absolute hell. My partner tells me that he’s surprised that a one hour session had this effect and I just want to slap him. But most of all I want to slap myself, if doing such a movement wouldn’t bring on further pain and fatigue.

Ich bin froh, Sie entdeckt zu haben. Das tut gut . Hier fühlt man sich verstanden .❤ Gruß aus Deutschland ☺️

I my biggest grief is not being able to commit, embarrassment at sayingI have this, and then saying yea on a good day or moment and the. Too tired to even think or respond and wanting to wait until Ihave an idea.

@pennyrobertson6118

Жыл бұрын

I feel exactly the same way 🥺

Firstly, I have to say that my family and friends have been amazingly supportive. I don't know how I lucked into such true niceness, but I did. Secondly, thank you for your advocacy. I'm new to your channel and appreciate your gentleness. I plan to explore because I've noticed some nuances among those who do support me -- ex. don't quite understand that passive energy (e.g. being a passenger in a car vs being the driver) doesn't solve the "I don't have energy to go" issue. Or they forget that it takes more energy than most people realize for our bodies to do "normal" body stuff (e.g. digest food). If you've covered any of that, I'm especially looking forward to it! I come from and joined families where ADHD is rampant (yes, another one of my hidden illnesses), so these kind of reminders are so helpful.

Thank you for your kindness and understanding about ME/CFS ❤️🙏✝️ Thank you for this video! It would be difficult for anyone to be in a relationship with someone with ME, they would need someone special to understand and acceptance.

Wow!! My brother says get the hec to work and get over it!! Going through post covid and ME. People push me to work out more, I’ve done and I got worse.. I have to do small incremental walks.. Thank you for sharing!!

@fight4me747

3 жыл бұрын

Yes, take it slow and rest as much as possible.

@Georgina7769

Жыл бұрын

Share these videos with your brother. I was diagnosed with m.e anout 8 yrs ago and then got covid a few years ago. Its so awful isn't it. Your mind can say so much but your body just cannot cope. It can have a real impact on your self asteem. Some days just thinking of doing something makes me feel desperately tired. When I'm suffering from a crash I even find I tell my husband to just relax as it feels exhausting just thinking about all he's doing

@sherryblatt4459

5 ай бұрын

May your brother never know the “ hell” you’re going through!! Years of going to doctors and tests and more doctors and your so tired even being at the drs office and they say you are the picture of health, ARE YOU DEPRESSED?????😓

It's good to see you are back. Was a little worried about you. Thanks for the video!

@fight4me747

3 жыл бұрын

Thanks, been a crazy year.

Welcome back, Johnny! I am a new subscriber but have been watching you for a while. You are an inspiration to so many of us with M.E./CFS, and I always look forward to what you have to share! I am single and have been ill for about 20 years now and had to stop working in 2018. It can be very isolating and difficult. I really appreciate your presence on this platform! Blessings to you and your family!🧡

@fight4me747

3 жыл бұрын

Thanks for the kind words and the sub! Im sorry you are going through a tough time.

@lifewithspirit323

3 жыл бұрын

@@fight4me747 I'm learning how to move through this with grace and perseverance, and I try to find blessings in each day. You know how it is!😋

@recynd77

3 жыл бұрын

@@lifewithspirit323 What a beautiful remark. May we ALL work to make it through life with grace and perseverance. ❤️

People can be very dismissive for sure

@fight4me747

3 жыл бұрын

Unfortunately you are correct.

Thank you for this video. I’m new to your channel. I have found a lot of comfort watching your videos. ❤

@fight4me747

11 ай бұрын

Welcome!

Thank you for your thoughtful and helpful video.

@fight4me747

3 жыл бұрын

Thanks for watching!

Thanks so much, always enjoy your videos. Planning to share this one with family members. I do, mostly, have support from them, but some education is always a good thing! And you do a wonderful job of explaining things in a way that people can understand. So, again, thank you!

Thank you so much for this.

Wow, this applies so well to long covid. Thank you!

@fight4me747

2 жыл бұрын

Im really starting to think Long Covid is actually ME/CFS. But Im no doctor.

@alexandrecouture2462

2 жыл бұрын

@@fight4me747 Keep fighting man, I'm sure there's a way out of this!

@LindaD02

2 жыл бұрын

I also have it from Covid. September will be 2 years. When I first was diagnosed I thought oh ok when I get tired I need to rest. I didn’t understand at all. I am just now learning. My doc got frustrated because she thought she explained it. She did I just didn’t process it. I was hiking 9 miles 2 weeks before I got Covid in 2020. Now. After my 2nd FMLA I just turned in my resignation. It’s a frustrating road but the loved ones taking care of us have to be just as frustrated.

Well said 🙏❤️

Great video. The mental health aspect is a tricky one because physical health affects one’s mental condition and vice versa. So while it’s important not to place blame for symptoms entirely on mental health it’s still extremely important to recognise that it will need attention as a result of the difficulties of living with ME/CFS.

love your viewpoints, very helpful

@fight4me747

3 жыл бұрын

Thank you! Glad they help. =)

Thanks again ❤

Thank you 🙏

Great video! I'm an m.e. sufferer myself and I've come across a treatment plan called the perrin technique that drains your lymph nodes through some type of massage. I've heard it helps a lot of m.e. sufferers, and I'm going to start the treatment soon myself. I'd recommend looking into it anyways :)

@fight4me747

3 жыл бұрын

I've actually done it years ago. It actually flared me up really bad. Be careful, it can get much worse before getting better. But I have heard many people find some degree of relief. Good luck!

@Spewl_Studios

3 жыл бұрын

@@fight4me747 Oh that sounds awful. Sorry to hear that

@fight4me747

3 жыл бұрын

@@Spewl_Studios Thanks, I hope you have a better experience!

@nickylodge9079

3 жыл бұрын

My son has been doing the treatment since July. You do get much worse before you get better. I do have a huge amount of confidence in Dr Perrin and our practitioner. Dr Perrin’s recently published book is fantastic. I am a neuroscientist and physiologist and I am very impressed with his understanding of the condition. Good luck 😉

@Spewl_Studios

3 жыл бұрын

@@nickylodge9079 Thanks for sharing. I'll definitely keep that in mind :)

❤❤❤

Thank you for your excellent videos. 💜 I was wondering if anyone has experience of using antibiotics for me/cfs? I recently got clindamycin for something else and felt better, did some research and apparently some people have experienced improvements.. I've become quite sceptical though because there have been ups and downs through the years x)

@fight4me747

3 жыл бұрын

I tried that. Made me feel a bit better but it ended up really messing up the gut bacteria in my stomach. Permanently. Have you been checked for Lyme disease?

My question is is this really what fibro really is??. I have fibro and myofacial pain. And few other illnesses. And been diagnosed for about eight years and do still greive a lot still.

@fight4me747

3 жыл бұрын

ME/CFS and fibro are very similar.

@lifewithspirit323

3 жыл бұрын

Penny, I have several chronic illnesses, including M.E./CFS, fibromyalgia, Epstein Barr, hypothyroidism, and multiple chemical sensitivity. I've been unwell for about 20 years now, but had to quit working in 2018. I am single, and it has been rough and isolating. I still grieve! I started a KZread Channel to give me purpose and to help others. You're welcome to visit, as I have a few chronic illness videos. Blessings on your healing journey!💛