5 Things NOT to say to someone with M.E. (shortened)

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Fight4 ME

Күн бұрын

Пікірлер: 35

@fight4me747 2 ай бұрын

Full Version found here ➡ kzbin.info/www/bejne/eoWmmZZ-fNmma9k

@lauraambrose1789 2 ай бұрын

Great video. I’ve appreciated all of your videos. Grounded, practical and real. Thank you.

@happiness6177 2 ай бұрын

Best Channel❤Great video😊Deeply grateful Johnny for sharing your experiences to help others❤Every video Im in tears,I guess from relief,reassurance,the way you speak & hearing "MY life" explained.You speak so well on behalf of us all.I was fortunate in away than most here,as I was so ill with M.E. no one had a chance to really say things to "ME" but I knew what most thought you can just tell & friends drift away."Stay positive"!! infuriated me the most!! M.E. ceased my old life along time ago.Blacked out rooms,bed, existing ,always hopeful for diagnostic,new treatments & CURE ❤Its so tough,Hang in there everyone,feel for you all😢❤😊

@KidCity1985 3 ай бұрын

I realized this week that it's not like I'm ill , but it's a disability.

@CricketGirrl 3 ай бұрын

Yes, it can be a profoundly disabling condition.

@CricketGirrl 3 ай бұрын

"You just need to exercise." I get that from doctors a lot.

@silvermoonuk 2 ай бұрын

I have severe fibromyalgia with very bad fatigue along side it. I have autism, bpd and bipolar. I hate it when I tell ppl my conditions and they reply, "I think I get that condition, too" because they get a little fatigue, or normal pains and aches or basic mood swings that everyone experiences. It frustrates me as ppl with my conditions aren't just a little moody, or tired or has basic aches and pains. Our mental and physical symptoms are more intense and chronic then just the every day issues ppl suffer with. I could rest and lead a normal lifestyle but still feel crap. Plus, I get fed up of ppl just telling me to exercise and eat healthy and think positive and all my issues will go away. I understand certain lifestyle routines may help us to us a certain extent but it isn't that easy to do these things. It can take time for us to even do the simplest things, such as showering, dressing, eating, answering the front door, etc... Big hugs 🫂

@traceytrotter9934 3 ай бұрын

People don't normally say these things to me but they definitely think them. I try to keep to myself as much as possible. I feel like I have to train people to be my friend and that I am not worth it. I am difficult to be around.

@esthercave8111 2 ай бұрын

Honestly after 7 years of battling this illness. I just know God knows how much i suffer and try my best daily to do what i can. I still push myself on to help people. They have no idea how much i suffer to do the things i do. I do have the odd day when i feel normal but its a rare occasion. Daily fatigue, unfreshed sleep, migraine, brainfog. Its taken me two years to learn to drive as i feel awful on most driving lessons. Never give up... God sees our suffering and there is a reason for it. Read the bible and turn to God for strength to endure and to God willing fully heal.

@Angel-rp4nu 3 ай бұрын

Good video👌 I have been through cancer therapy and only since then doctors take me seriously. The ridiculous thing is ME is so much more restricting than people can imagine. We have to fight to get heard and fight to get through each day without too much PEM or risking a crash. And yeah, tiredness is actually nice, while the extent of exhaustion in ME in body and brain can not be explained. Wishing everybody a little joy today🌈 !

@reneaconaway7380 3 ай бұрын

Thank you, Thank you, Thank you. 💯

@premadimauro2691 3 ай бұрын

I get laughed at and ridiculed for not going out in the rain. I can get very sick with increased pain caused by the high humidity and low barometric pressure. I stay home and dry to protect my health

@inezRamses 3 ай бұрын

Me to!

@chihuahuapixieprincess2482 2 ай бұрын

I'm moderate since '95, I'm happy, cheerful, grateful that I'm well enough to sit in my garden if it's not too hot rather than reclining on sofa, and I have my best telling me I have a fabulous full life. When I ask what's fabulous about being too ill to go out, that a choice is garden or sofa and Christmas day is 4 hours max, the reply was well you're always energetic (I assume they mean positive) so you can't be that ill. My personality is not my illness; as you say it's taken everything from me including my home - people expect us to be lying around groaning and moaning. Made me furious which obviously I can't do or I'll pay for it 😂

@akcharly 2 ай бұрын

Such great advice

@TraceyBarracloughInspiration 3 ай бұрын

I’ve long since come to the conclusion that some people simply have a problem accepting that I have ME. I’ve decided that it’s their problem, although this is not an easy point to get to. Some people don’t WANT to accept it, for whatever reason. God help them if they ever got it, because I doubt they’d be able to handle it. The most difficult thing I find is when people use the T word (tired); I have a dear friend who I love, who always refers to me as being tired. If I had the energy, I might throttle her 😂 I also get told how well I look, as if that somehow makes it alright. I used to say, it’s a shame I don’t feel it. Now I just say thank you and think ‘whatever’ inside. I always appreciate your videos from the UK 🧡

@chihuahuapixieprincess2482 2 ай бұрын

Thank god we don't look how we feel 😁❤

@TraceyBarracloughInspiration 2 ай бұрын

Indeed 😬mixed blessing ha? 🧡

@johnqualls5990 3 ай бұрын

Thanks for the video! With Long Covid and M.E, my immune system so is randomly hyperactive that my symptoms change every day or weekly. That’s why family and friends think I’m unreliable and “faking”.

@bas3374 3 ай бұрын

Es wechselt immer und ständig 😢Grußaus Deutschland ❤

@johnqualls5990 2 ай бұрын

@@bas3374 Schlaf hilft mir am meisten. Allerdings mit der Geräuschempfindlichkeit ist Gehörschutz notwendig. Welche Region in Deutschland?

@bas3374 3 ай бұрын

Hitze, Sturm, Wetterwechsel machen es besonders schlimm ! Gewitter im Kopf ❗️🙈

@SueHornby 3 ай бұрын

I had a family member say to me You're lucky you haven't got children to look after. There's people who've got what you've got that have little ones to look after. That must be hard for them. Yes I'm so lucky aren't I. They just don't get it.

@alysmarcus7747 3 ай бұрын

i have people say to me: Oh, you're one of those. (doctors say that particularly when they want to give me a drug i cannot take) So basically it's like 'oh, you are exaggerating or faking. I got told EVERY time i went to the dentist (every week) this year, you need to eat more protein and you'll be fine. I said, well i eat 6 eggs a day, yogourt and cottage cheese. ; i'm not sensitive to pain, i have more pain. my legs feel like they are being burned and crushed all the time. When the weather changes it' s everywhere. etc So - 3 assesses in my face - i can't even describe ; everything hurts, what hurts more - i can't even tell any more.

@christineryan2988 2 ай бұрын

I am very tired of people recommending diets, like that will cure me. And, I'm desperate, so I have literally tried them. No help. I am a rare ME sufferer in that I have a job. But it is literally all I do. I teach. During the school year, I go to work, come home and sleep. Then I sleep all summer to try to get back some (it really doesn't work, I get worse every year). Students will get sad that I don't see their games or plays, etc, but I literally can't. And this is my second career, I already had to leave one as I couldn't keep up anymore. I'm terrified of when the time comes that I'll have to quit this career too, but I see myself slowing getting worse. Sigh, it's such a struggle, but I try to stay positive because I DO have a job and so many of us can't. My doc is great and I have a handicap placard, but I still feel the stares...I use it though, because those extra steps to the store can make such a difference for me. I donno, this is a rant. Thanks for the video and raising awareness,

@fight4me747 2 ай бұрын

Have you looked into LDN?

@neuroctopus Ай бұрын

I hope I can get some of my (well meaning) friends to watch this video because I've heard almost all of these before! I try to give people the benefit of the doubt knowing that I would't understand ME either if I didn't have it. But that doesn't make it any easier ofc. Great resource to share.

@alexiapappas2741 2 ай бұрын

Everyone is telling me that it's a hex. 😂 I don't even believe in that

@annahallgren1055 2 ай бұрын

😄 OMG! It’s really hard for many to understand that this illness exists!

@IncognitoGypsy 2 ай бұрын

🙏🏼💜 thank you

@kbear2478 2 ай бұрын

🥀Thank u 👌so much sorry I can't contribute too diff.🥀

@annahallgren1055 2 ай бұрын

“You’re lucky that you don’t have a serious illness at least, like cancer.” “What are you doing with all of your free time?” “I was SO exhausted when I came home from South Africa, you can’t imagine” First time with the therapist: “I will fix this, I have almost always succeeded to cure all sorts of things and I had what you have” Some months later when the therapist have not ‘succeeded’: “Are you sure that you really are thinking positive thoughts and look forward to the future?” (Yes.) “I get more energy when I see other people. You actually get energy from that.” “I was so worried that you would look thin, but you look so fine! The only thing (wrong with you) is that you close your eyes sometimes when you speak (like I wouldn’t know that myself or notice my brain fog and cognitive disabilities).” (The friend that has a nice husband and a child repeatedly texts, calls;) “I feel so lonely. Are you ever going to see me?”