It’s always so good to hear someone describe the way you feel so perfectly when no one else around you can understand. It makes it all a little less lonely.
What I find really difficult about this illness is that sometimes I feel like I have more energy and at the beginning I used to get really excited and think that I was better and try to do the stuff I did before I had it and then I would end up bedridden for weeks. Now if I feel good that I have energy, I have to make sure that I do not do too much. It's really hard as it's like being in a prison where the gates are open but you can't go out of them.
I'm a type of person who can turn on an outgoing personality when I need to, like for a job. I also truly love makeup. Because of both of these things, MOST people assume that means I'm healthy as I can appear to be. Your talking points are seriously two of the most difficult aspects of this illness. It ends friendships, relationships, and can make family relationships difficult when they don't understand. Thank you for your videos to reassure us living with ME/CFS that we aren't crazy and it's just that many people, and to clarify sometimes very loving people, can have egotistical viewpoints when you try to explain your struggles. Another GREAT point I'd like to add that's in line with this video is, "You're so young! Of course you're healthy!"... Yep. Because every illness chooses what age to affect people. There are no children with cancer, heart conditions, etc in the world. So me at 28? SUPER HEALTHY guaranteed! XD
Tell your friend that CPET testing has 100% confirmed that people with ME have severe post exertional malaise . They have found that people with ME have a worse Post Exercise recovery time than some people with lung cancer. We go into anaerobic threshold from basic tasks like taking a shower.
Before I found my current doctor I had a previous doctor tell he wanted me to take adderall. Fortunately, even before my diagnosis, I had the sense to know that that was a terrible idea. Later on I talked to the same doctor and told him what I had and he still wanted to put me on adderall. Glad I never took that drug and glad I found my current doctor who has more sense. Adderall is a stimulant. More specifically it is a sympathomimetic (stimulates the autonomic nervous system). ME/CFS patients have autonomic nervous system instability and orthostatic intolerance. This means stimulants make things worse. The former doctor basically told me I looked fine and I should snap out of it. Not only is it really is unfortunate when friends and family don't understand, but there are some doctors who are clueless. I think I saw a statistic that is takes ME/CFS patients seeing several different doctors before they're diagnosed correctly. Keep up the good work everyone. I know this is the most challenging thing I've dealt with in my life. Also, there are some really good doctors out there too.
Thats a really good point. I personally saw about 50 different doctors before I found any relief. I live in southern california where there are some of the "best" doctors. You'd think that I would have had a better experience.
William Price Having been ADHD since childhood (but unmedicated and managing for many years)....when everything first began and I was desperately searching for answers I thought I was just no longer able to control my ADHD symptoms due to all the unknown physical issues that were arising and I did decide to go back on Adderall....and personally I have found it to be extremely helpful in fighting thru the fatigue and fog!! After having been thrown SO many meds with various side effects without much if any benefit....I felt that this was definitely a winner....of course if taken in moderation. I do not take it daily, I only take it every other day at best and I still listen to my body and rest when necessary which has allowed me to not become dependent or even a need to increase dosage despite having been on it for a couple years now. Buuut....now you have me wondering if I'm causing more harm than good. Hmmm. I'm glad I came across this and will def do more research in this area....but honestly I'm hoping that maybe for those that also have ADHD, this is a good choice cuz Lord knows it helps me function on my "so called good days" and if I get any less productive I'll need a caregiver lol
Samantha Mills Hi Samantha. I'm not an expert, so my best advice is to listen to your body. Perhaps if someone with CFS/ME also has ADHD then adderall would not cause adverse problems if taken in moderation. I don't know. I do not have ADHD so I don't think it would have been a good idea for myself. I take DHEA, a lot of other supplements, eat super healthy (eat 6 different colored fruits or vegetables each day), use resistance bands for mild strength training, and have taken a medical leave from my career until I'm better. All that being said what I can tell you is what I do for myself, and you should do what's right for you. I really do wish you the best! You'll do great on this difficult journey.
I'm in Ativan over 25 years I feel so sick after I take them and feels like I'm going to have a stroke or heart attack 😰This why .. After so many doctors none of them told me
Hi, great video. I'm thinking I might have ME CFS. I have been diagnosed with Fibromyalgia since about 2019 but I now obviously have post exertion malaise now after I did my normal part time online tutoring for an hour at 8.30am on Tuesday.. 2 days ago. I had all Wednesday yesterday exhausted in bed and it's the same today. I can't even take a bath. I think I'll mention this to my GP today as they're brilliant and they really know about Fibromyalgia and ME CFS. I've subscribed to your channel here. I hope you have positive and professional support in your ME journey. I have a brilliant husband who is very down to earth and has patience, understanding and humour. He's very skilled at cheering us both up. Thank you. Kind regards from Elizabeth in Yorkshire UK
You picked one of my hot buttons! "Gee, you look fabulous." I jokingly tell people to wait on and they can watch me wilt. Thanks for making this video. You are a treasure! I guess I'm not as crazy as I thought I was!
This is a truly wonderful video. This is a perfect video to show to family and friends. I look fine but I feel horrible. I try to educate people but I do understand if people do not get it. It’s hard enough for me to accept my condition. This is an excellent tool to assist in understanding what a person with ME/CFS deals with daily.
Hah, I went to doctor complaining fatigue and he adviced me to sleep more and go to work. I think that it was, because he is a workaholic and for him, the work is the most stabilizing thing in his life. People even doctors understand things only through their own experiences. He was a nice doctor who really wanted to help me.
Thank you SO much for sharing, a couple of your videos have brought me to tears this morning because THIS is what I find MOST difficult about living with ME/CFS....but I can never find the words to make other people understand. Sometimes even attempting to explain is too exhausting....and with most still unable to understand, I often don't even bother. So again, THANK YOU!!!
Johnny, I was sick with a mystery illness, on top of M.E., during the pandemic and had to stay with my sister. When I visited the dr, who actually diagnosed me with M.E., he said, “Well, you look good.” That was the last thing I needed to hear, while struggling with my lungs, stomach, and heart!!! I was as sick as a dog then, and it really felt as if he didn’t take me as seriously because I looked so well. I’m told that all of the time, and it is a compliment, but it discounts our experience with chronic illness. Btw, he wasn’t able to diagnose me, but I ended up having h-pylori, which I wouldn’t wish on my worst enemy. The symptoms are better, but I still have it and have been diagnosed with treatment resistant h-pylori. I haven’t even talked much about it on my own channel bc it’s been so traumatic. Be well, Brother!🌻
I feel like my family still doesn't understand this illness at all... Even though I send them links to information on the internet describing the symptoms. I've also had a few remarks from them saying that I look fine and seem find by my social media posts/ text messages etc....I told them that you can never know what someone is going through or how they feel by a text or social media post or by the way they look on the outside. This illness has made me very compassionate and understanding towards everyone I meet and know in my life. I can truly relate to how they are feeling and try my best to picture myself in their certain situation.
I've seen a lot of post Covid people leaving comments and joining the support groups. Im sorry you're going through this, but welcome to the community.
Yours is the first channel I've found dealing with ME. I think I have it, but not a severe case. I've watched other videos of people who have it a whole lot worse than me. I just do what I can by pacing myself. For everyone going through this and all debilitating conditions, I wish you all the best. Thank you for bringing awareness.
You are an angel, thank you for your videos! I don’t feel like I’m alone anymore. Plus you put into words what I feel, what I want to say, But have difficulty expressing it as clearly as you. so very helpful for me, thank you
What about 'during' exertional malaise? I mean to get extreme fatigue and malaise that does not permit one to continue whatever activity was being done? That's what I get. And I'm sick of people looking at me funny and thinking I'm just a weakling or even lazy. I'm not!
Sergio Reyes we need to learn to ignore this type of people. You know you are honest and truly struggle, so they should be ashamed of themselves, not us. We do t need to prove anything to anyone.
You highlighted this in your video, so it's a bit amusing. I've had my dad watch your videos and his response is you seem well and are probably maintaining a close to normal life. If I could ask: what's your activity level? Are you able to work? Maintain a social life? I've been ill 8 months now and feel I've plateaued. I'm pretty mild I suppose although I definitely feel quite sick all the time and this past week was rough. It's quite daunting to know I will most likely get progressively more ill. I'm struggling enough as is.
Hello Bri, Sorry to hear you are not well. Please tell/show your Dad that before this I had a six figure career. Thats gone. My wife and I wanted kids, thats gone. Hiking with friends family? gone. I used to box, play basketball and baseball, gone. I only make these videos about once a month because most of the time i cannot get passed the neuro issues I have to even remember what I want to say. I also have about 20-30 outtakes making these because I flat out run out of energy and stop for a while. Im still bedridden at times and my activity level is almost nothing. My life is a fraction of what it once was. Many people dying of cancer can make a 4 minute video and look fine btw. Like I said, I grew up boxing. Im not weak minded or "soft". If this can cripple me, it is probably destroying others. I hope your father understands and I hope you feel better Bri.
Fight4 ME You're my hero....I can truly relate!! I can only imagine how long it would take me to be able to do these videos....between losing my train of thought, getting my words jumbled, rambling, flat out forgetting what I wanted to say....and especially just being too overwhelmed/over stimulated to finish. Geesh...and that's without even having to find the energy to put make up on first to even get the nerve to go on camera lol. Again, THANK YOU!!
thank you for making these videos - no one in my family understands this, we are not lazy & because we look healthy people including doctors think we are lying
Another wonderful video! PEM is one of my biggest "symptoms" of CFS - I ALWAYS crash if I over exert myself - its just a matter of how bad and how long it lasts. I appreciate your candor!
Very true. Thanks for sharing these things. Just one little point....best keep away from the word 'tired', as you're aware, M.E. doesn't really have to do with normal tiredness or fatigue. it's G force in the brain! ;-) Peace to you
I concur to a degree, but I have found that people don't understand much about the illness and I don't want to sound very technical in some of my more basic videos. In the near future Im going to make videos for those of us who have had ME for years and are a bit more aware of the illness. Cheers
I understand. The reason I probably mentioned it was in my 20 year experience with M.E. here in England (although I nearly moved to the States before I got ill), especially in relation to claiming disability benefits, certain words tended to trivialise the true extent of the disability. Thanks again, I enjoy your videos. I'm sure it takes a lot of strength and courage to make them. Take care
I would always get that. I would exercise, and even a small amount of light exercise, like clockwork, by that evening I would have a migraine headache. It’d get to the point where my stomach would get upset from taking my migraine pills every night. Exercise was never fun and after awhile I started dreaded it. It would become a matter of what was supposed to make me healthy was making me worse….
if I'm active for 2 hours I might manage that , if I m not active the next day . If I go out for 3 or 4 hours it would take me 3 or 4 days at least to recover. I have fibromyalgia .
i have flu like state and feeling very sensitive and uncomfortable to cold like cold weather and cold water does this relate to PEM? as if my body struggles to regulate temperature and malaise
What can we do for work? I have pretty bad CFS and also work a very heavy labor job. After 8 months of this job my body is seemingly dying and flaring up I’ve had to drop my hours significantly. What do you do for work? I want to do something less physical yet I have a hard time focusing because of the brain fog
@@AlbaLynxQueen Many of us pushed through when we shouldn't have. They think we're lazy but we're some of the most determined people. I wouldn't discount that person for pushing through. He may be in the early years of ME/CFS when many of us continued working even though we know now we probably shouldn't have because what really do you do without a job esp if you get an ALJ judge who doesn't believe in ME/CFS like I did.
@@JudesOth-acc Well, I couldn't work sice day one. I still could walk a bit and drive. But i feel extremely unwell 24/7. I don't understand how people can even push through. I physically collapse if I try to do anything harder than my usual routine. And general chronic fatigue isn't ME/CFS at all.
