One tip I'll mention that I learned the hard way after a long time of denial is, when things get bad, or impossible, then take a nap. Sleep even if only 2 or 3 hours and you may wake up and find that the impossible becomes doable. When in doubt, take a nap. It's sound good sense for us.
That is such an amazing tip! It's a great way to just mentally step away and also give your body a recharge, thank you for sharing! I absolutely need to incorporate this into my daily life 😊
I know this is an old video, but I just got diagnosed after living like this since I was 17. I'm 41 now. I pushed through because that's how you build stamina, right? Turns out that is exactly the worst thing to do. I have horrible agoraphobia too due to all the things, like anxiety from potentially running out of energy and not being able to get home. I get sick at the drop of a hat, so that's a good excuse to stay in too. It's validating to know I'm not alone here. This is 100% the kind of information I was looking for and it took me weeks to find. I appreciate it so much.
Thank you so much for watching, this comment means so much to me! I know how isolating it can be 💕 I'm really glad I could help you feel less along because that was 100% my goal! I plan to make more videos about this illness in the future, if there is anything you'd be interested in seeing please let me know! I'm always looking for suggestions 😊
@@xosammtastic I would love some tips on coping, or basic things like how you figured out your own warning signs for when you were running out of steam, because I am so used to pushing through, knowing how to listen to my body is foreign. Another thing that would be awesome for me at least is a talk about the tools you find most helpful. I am so glad I now have a cane and never looked back, but I've been talking options with my doctor. It would be great to hear your journey in finding the aids that work for you (if not too personal). I just woke up from a nap, so I know there's more, but I'm not fully awake. I am just so happy to hear you'll be making more content relating to ME/CFS!
@@sarasynfox these are great suggestions, thank you so much! I had a spot marked out for a new video about this but no idea yet, so this was very helpful. I can absolutely make a video for all of these things and look forward to offering more help 😊 Just a little heads up, all of October I will be uploading Halloween content, but then I will be back to my normal stuff! If you think of anything else you'd like to see, just let me know!
Well done. Thank you. I'm eighteen years in, and like you have found things that make having M.E. a little easier. I hope you do not mind if I add a few, but sharing our experience with this curse can, as your video does, help others. A shower chair. Battery powered socks, gloves for around the house when your thermal regulation is impaired. A fan for the same reason. Orthostatic intolerance puts me on the floor..instantly. I have a lot of pillows scattered around that I can quickly grab for head support since this can leave one prone for quite awhile. A robot vacuum for those living alone. The sedentary life that most of us have to lead creates weight gain. Remove your bathroom scale from your home. If you like being outdoors and can afford it, a powered mobility device makes that part of living doable again. If you live alone and still clean your own home, Swiffer's rather than a dust cloth are less taxing than using a dust cloth. If you have one, your dishwasher is your friend. Again...putting a video like this can cause a crash. I really do appreciate your work...
Thank you so much for you contributions! Those are really great ideas, I knew my obsession with throw pillows and stuffed animals would find a use one day! I'm going to scatter then around the house now 😊 And thank you for your kind words, I always felt like my life's mission was helping people. When I lost my ability to go into my chosen career path, I thought I lost my ability to help. I'm glad I haven't 😊
thank you so much for this video I have had long covid for 2 years now, I have been through the galslighting from doctors and even my own family. It is so true that you start to gaslight yourself when everyone around you is treating you a certain way. I bought a wheelchair for myself and my dad told me I was over reacting and laughed at me.
I'm so sorry you have been dealing with this 😔 it makes being sick so much more isolating when the people closest to you don't try to understand. I'm so glad you bought yourself a wheelchair because it isn't an overreaction at all! You know what will help you and mobility aids are for everyone, there aren't minimum requirements for needing assistance. Thank you for watching 💕
Thank you for this video! I have been suffering with longcovid since november last year and I really needed to hear that I'm not alone. I mean I know I'm not, but just hearing you talk about all these little things was very helpful!❤️ I am currently struggling to graduate school and it's been pretty hard. I can't really go to school and have to study from home which can be pretty isolating, so it really helps to hear that other people struggle in the same way😭❤️❤️
I'm so sorry to hear you're struggling 😔 this isn't a situation I would wish on anyone, but I'm so happy to hear I could make you feel less alone! 💕 It is so isolating being stuck at home, especially when we are struggling to come to terms with what's happening to our bodies! You are absolutely not alone 💕😊
I've had CFS since 1998. The journey for myself and my wife has been very long, extremely emotional, and very costly in $$$$$. So many medics claimed they could help but not one could. More $$$$$. Putting a name to my illness was important, which put me on the path to better understanding. From a high level and well paid salary to being totally exhausted after a shower mind shattering. I think acceptance of the illness is important, even though that doesn't lead to better health. A lot more research is focused on CFS/ME following long COVID, and that is great. Thank god for our carers and support people, even though some of those cannot fully understand what we go through. Thanks for your video.
I can't even imagine how hard it was to lose your career like that 😔 it was important to me to get a name too, it didn't cure me, but it sure helped me feel seen and like a person again; I'm sure you understand that well. I'm grateful that COVID has brought more medical attention and understanding to this illness, I can only hope with it comes some sort of legitimate treatment. I'm so glad you have amazing carers and support people, too; they are priceless in our lives! Thank you for watching 😊
I got CFS a few days before my 30 th birthday,it has now been 32 yrs and I did find out it started after getting the Epstein barr virus .Doctors are of no help ,I have to deal with the symptoms alone,even lost my job as a nurse,due to pain, fatigue and brain fog .I hate to say this but I'm bitter for the life that has been stolen away from me .
I'm so sorry to hear that 😞 I can't say I feel "lucky" but in a sense I call it luck that I got sick before I could start my adult life as I feel like the grief is so much worse when you have a life stolen rather than never getting to start it. I think it's totally normal to feel bitter about it sometimes, it truly isn't fair the hand we have been dealt.
@@xosammtasticdo you have hypomobility had CFS 26 years fybromyalgia 6 even though I believe it's same thing found out I have Asperger's add this year all part.rccxx gene theory
@@Truerealism747 I am absolutely hyper mobile, but haven't yet been officially diagnosed with anything formally! As I've aged it has for sure caused extra pain and discomfort than just the fibro alone
@@xosammtastic what else as the hypomobility caused if you have hypomobility heds it's related to ADHD Asperger's check out Dr lenz do you have those ime diagnosed late 43
I have had cfs since 2009 it came down on me like a ton of bricks it has been devastating. I have sleep apnea recurring cellulitis ptsd as well as major depressive disorder doctors have not helped me in fact I have had more than one tell me to my face that they don't think cfs is real I am in a awful situation now taking care of my bed bound mother because my sister refuses to believe I am sick I feel like I am slowly dying trapped hopefully I will be set free from this nightmare I am totally alone with this devastating illness
CFS is a world shattering illness and it's so upsetting when people refuse to see it for what it is, assume it isn't real, and assume we make things up for whatever reason. I see you and I believe you. This illness is no joke and it takes so much from us. I'm so sorry to hear that you're struggling to find a doctor and that you don't have support at home while you're taking care of an ill relative at the same time. I don't want to give toxic positivity here and say everything will get better, that never helps. I want you to know that I understand, truly. I don't have a lot of advice myself, as my situation is different, but this forum has been so helpful to me and offers a lot of resources for all different levels of CFS so I'd like to share it with you, it might be able to help you find a doctor in your area as well www.reddit.com/r/cfs/
I think that you are actually good with words (opposite what you say about yourself on the video). You are very precise and clear with your words 😊💗💗💗 (Just realized that my other comment in here is kind of downplaying the weight of this one hah 😄But I think that I commented the same way to some other video of yours yesterday.)
Thanks for the video, it is very kind and compassionate of you to share. I'm sorry that you have to go through this. I wish you a happy life and that the medical field finds a cure soon.🙏❤
I am a 52 year old male and I have been unable to work since November 2018. That was when I was diagnosed with 3 hernias and one umbilical hernia that required surgery. Since the diagnosis I developed a constant pressure headache behind my eyes that never goes away and pills do not help. Advil Extra strength liquigels help keep the pressure down but do not alleviate the headache entirely. I am also dizzy whenever I move my head and I cannot ride in a vehicle for long. I ignored the dizziness in early 2019 and fell down some stairs, breaking my foot and receiving a nasty head wound. May of 2019 I felt severe pain in my chest when trying to exercise. I was not able to see a specialist until fall that year and she was enraged that I went to see her, I did not understand why, I had never seen her before but she did not believe me, yet she put me on steroids meant for people suffering with COPD and I am still taking them. I had 2 sleep studies of which they both found that I stopped breathing roughly 23 times in a minute. I tried a CPAP for 5 days. It made my headaches and chest pain worse, on the fifth day I ripped it off of my head while sleeping because it was severely disrupting my sleep. The other specialist recommended I spend $3000 on a mouth piece. I never wake with a sore jaw and my breathing issues are 24/7, not just when I sleep. I have been told by roughly 6 specialists that nothing is physically wrong with me, I can tell they believe I am making this up. I crash between 2 to 5 times in a day from 20 minutes to 5 hours at a time and I never feel rested. My Circadian rhythm is out of wack and currently believes I should be sleeping between noon and 6pm. I used to forget simple things once in a while, now I struggle to watch tv or movies due to brain fog. I struggle to pay attention and tasks that I once found simple are now complex and I am unable to complete. It is a good day if I can make breakfast and do the dishes, which I might do half of the time. I used to love to cook, now meals are either supper simple or take out. I bought a $1500 BBQ around 2014 that I would use 3 to 4 times in a week. I have used it around 2 to 3 times this summer to cook hot dogs and plain chicken. I shower between 2 and 3 times in a week because it takes so much energy. I used to shower twice in a day without thinking about it. I was told my heart is in good condition. I just found out that I will no longer receive Canada Pension Plan because my issues are not severe enough. This is no where close to my idea of retirement. I have so many issues that I forget stuff that happens to me. Recently I am getting very sharp pains that go away as fast as it comes on and my hip is really sore when I wake up. I am very lucky to have a wife that is understanding but we are not going to be able to survive on her income alone. I wish I could have brought her or a lawyer with me to my appointments. I needed an advocate. The entire time I am at an appointment I am thinking I need to get home to bed and since I ride in a vehicle to appointments I avoid taking Advil so they can run tests without that being a factor. Since 2018 I have put around 3500km on my truck. I am NOT able to work...
Do you get disability? I'm also not able to work anymore but living off savings. Scared if I don't get normal soon...I need to heal and work so I don't spend more of my savings
I'm sorry I didn't reply sooner, UA-cam is not very good at notifying creators of comments. That's so much to happen to a person and I'm so sorry your going through that 😔 I'm glad that you have your wife as a support person, that's so important. None of it is easy, but having people be there to advocate and support me has been so helpful. I don't know much about how the process would work, but I would do some research into if you have a disability program as it could really help you out. The application process is usually very demeaning and takes a long time, but you deserve to have support even when you're ill!
One tip I'll mention that I learned the hard way after a long time of denial is, when things get bad, or impossible, then take a nap. Sleep even if only 2 or 3 hours and you may wake up and find that the impossible becomes doable. When in doubt, take a nap. It's sound good sense for us.
That is such an amazing tip! It's a great way to just mentally step away and also give your body a recharge, thank you for sharing! I absolutely need to incorporate this into my daily life 😊
Great video. I've learned to rest at the first sign of worsening. And dont compare yourself to other people your age.
Thank you! 😊 And you're exactly right, you can't compare yourself to anyone else!
I know this is an old video, but I just got diagnosed after living like this since I was 17. I'm 41 now. I pushed through because that's how you build stamina, right? Turns out that is exactly the worst thing to do.
I have horrible agoraphobia too due to all the things, like anxiety from potentially running out of energy and not being able to get home. I get sick at the drop of a hat, so that's a good excuse to stay in too. It's validating to know I'm not alone here.
This is 100% the kind of information I was looking for and it took me weeks to find. I appreciate it so much.
Thank you so much for watching, this comment means so much to me! I know how isolating it can be 💕 I'm really glad I could help you feel less along because that was 100% my goal!
I plan to make more videos about this illness in the future, if there is anything you'd be interested in seeing please let me know! I'm always looking for suggestions 😊
@@xosammtastic I would love some tips on coping, or basic things like how you figured out your own warning signs for when you were running out of steam, because I am so used to pushing through, knowing how to listen to my body is foreign.
Another thing that would be awesome for me at least is a talk about the tools you find most helpful. I am so glad I now have a cane and never looked back, but I've been talking options with my doctor. It would be great to hear your journey in finding the aids that work for you (if not too personal). I just woke up from a nap, so I know there's more, but I'm not fully awake. I am just so happy to hear you'll be making more content relating to ME/CFS!
@@sarasynfox these are great suggestions, thank you so much! I had a spot marked out for a new video about this but no idea yet, so this was very helpful. I can absolutely make a video for all of these things and look forward to offering more help 😊
Just a little heads up, all of October I will be uploading Halloween content, but then I will be back to my normal stuff! If you think of anything else you'd like to see, just let me know!
Well done. Thank you. I'm eighteen years in, and like you have found things that make having M.E. a little easier. I hope you do not mind if I add a few, but sharing our experience with this curse can, as your video does, help others. A shower chair. Battery powered socks, gloves for around the house when your thermal regulation is impaired. A fan for the same reason. Orthostatic intolerance puts me on the floor..instantly. I have a lot of pillows scattered around that I can quickly grab for head support since this can leave one prone for quite awhile. A robot vacuum for those living alone. The sedentary life that most of us have to lead creates weight gain. Remove your bathroom scale from your home. If you like being outdoors and can afford it, a powered mobility device makes that part of living doable again. If you live alone and still clean your own home, Swiffer's rather than a dust cloth are less taxing than using a dust cloth. If you have one, your dishwasher is your friend. Again...putting a video like this can cause a crash. I really do appreciate your work...
Thank you so much for you contributions! Those are really great ideas, I knew my obsession with throw pillows and stuffed animals would find a use one day! I'm going to scatter then around the house now 😊
And thank you for your kind words, I always felt like my life's mission was helping people. When I lost my ability to go into my chosen career path, I thought I lost my ability to help. I'm glad I haven't 😊
thank you so much for this video I have had long covid for 2 years now, I have been through the galslighting from doctors and even my own family. It is so true that you start to gaslight yourself when everyone around you is treating you a certain way. I bought a wheelchair for myself and my dad told me I was over reacting and laughed at me.
I'm so sorry you have been dealing with this 😔 it makes being sick so much more isolating when the people closest to you don't try to understand. I'm so glad you bought yourself a wheelchair because it isn't an overreaction at all! You know what will help you and mobility aids are for everyone, there aren't minimum requirements for needing assistance.
Thank you for watching 💕
Thank you for this video! I have been suffering with longcovid since november last year and I really needed to hear that I'm not alone. I mean I know I'm not, but just hearing you talk about all these little things was very helpful!❤️
I am currently struggling to graduate school and it's been pretty hard. I can't really go to school and have to study from home which can be pretty isolating, so it really helps to hear that other people struggle in the same way😭❤️❤️
I'm so sorry to hear you're struggling 😔 this isn't a situation I would wish on anyone, but I'm so happy to hear I could make you feel less alone! 💕 It is so isolating being stuck at home, especially when we are struggling to come to terms with what's happening to our bodies! You are absolutely not alone 💕😊
I've had CFS since 1998. The journey for myself and my wife has been very long, extremely emotional, and very costly in $$$$$. So many medics claimed they could help but not one could. More $$$$$. Putting a name to my illness was important, which put me on the path to better understanding. From a high level and well paid salary to being totally exhausted after a shower mind shattering. I think acceptance of the illness is important, even though that doesn't lead to better health. A lot more research is focused on CFS/ME following long COVID, and that is great. Thank god for our carers and support people, even though some of those cannot fully understand what we go through. Thanks for your video.
I can't even imagine how hard it was to lose your career like that 😔 it was important to me to get a name too, it didn't cure me, but it sure helped me feel seen and like a person again; I'm sure you understand that well.
I'm grateful that COVID has brought more medical attention and understanding to this illness, I can only hope with it comes some sort of legitimate treatment. I'm so glad you have amazing carers and support people, too; they are priceless in our lives!
Thank you for watching 😊
Yes most doctors are there just for the money I worked with some. Thank you for sharing this information. I know it will help someone 😊
Thank you, that's really my goal 😊💕
Ugh I can't even imagine what working with some of them must have been like 😬
I got CFS a few days before my 30 th birthday,it has now been 32 yrs and I did find out it started after getting the Epstein barr virus .Doctors are of no help ,I have to deal with the symptoms alone,even lost my job as a nurse,due to pain, fatigue and brain fog .I hate to say this but I'm bitter for the life that has been stolen away from me .
I'm so sorry to hear that 😞 I can't say I feel "lucky" but in a sense I call it luck that I got sick before I could start my adult life as I feel like the grief is so much worse when you have a life stolen rather than never getting to start it. I think it's totally normal to feel bitter about it sometimes, it truly isn't fair the hand we have been dealt.
@@xosammtasticdo you have hypomobility had CFS 26 years fybromyalgia 6 even though I believe it's same thing found out I have Asperger's add this year all part.rccxx gene theory
@@Truerealism747 I am absolutely hyper mobile, but haven't yet been officially diagnosed with anything formally! As I've aged it has for sure caused extra pain and discomfort than just the fibro alone
@@xosammtastic what else as the hypomobility caused if you have hypomobility heds it's related to ADHD Asperger's check out Dr lenz do you have those ime diagnosed late 43
I have had cfs since 2009 it came down on me like a ton of bricks it has been devastating. I have sleep apnea recurring cellulitis ptsd as well as major depressive disorder doctors have not helped me in fact I have had more than one tell me to my face that they don't think cfs is real I am in a awful situation now taking care of my bed bound mother because my sister refuses to believe I am sick I feel like I am slowly dying trapped hopefully I will be set free from this nightmare I am totally alone with this devastating illness
CFS is a world shattering illness and it's so upsetting when people refuse to see it for what it is, assume it isn't real, and assume we make things up for whatever reason. I see you and I believe you. This illness is no joke and it takes so much from us. I'm so sorry to hear that you're struggling to find a doctor and that you don't have support at home while you're taking care of an ill relative at the same time. I don't want to give toxic positivity here and say everything will get better, that never helps. I want you to know that I understand, truly. I don't have a lot of advice myself, as my situation is different, but this forum has been so helpful to me and offers a lot of resources for all different levels of CFS so I'd like to share it with you, it might be able to help you find a doctor in your area as well
www.reddit.com/r/cfs/
I find that sublingual D3 works the best. It goes straight into the bloodstream.
I didn't know they made this! I use the sublingual B-12, so I'll have to check into it
@@xosammtastic The brand is Superior Source and I get it at Vitacost. What brand is your B12?.
I think that you are actually good with words (opposite what you say about yourself on the video). You are very precise and clear with your words 😊💗💗💗
(Just realized that my other comment in here is kind of downplaying the weight of this one hah 😄But I think that I commented the same way to some other video of yours yesterday.)
I'm glad to hear this because sometimes I wonder if I might be confusing people more with my brain fog lmao
Thanks for the video, it is very kind and compassionate of you to share. I'm sorry that you have to go through this. I wish you a happy life and that the medical field finds a cure soon.🙏❤
Thank you so much, this means the world to me 😊💕 I've been having a few days of feeling quite sick and this cheered me up for sure!
@@xosammtastic So sorry to read that you are feeling quite sick.😔 I hope you get well soon.🙏❤
@@realsabrina9362 💕 thank you!
I am a 52 year old male and I have been unable to work since November 2018. That was when I was diagnosed with 3 hernias and one umbilical hernia that required surgery. Since the diagnosis I developed a constant pressure headache behind my eyes that never goes away and pills do not help. Advil Extra strength liquigels help keep the pressure down but do not alleviate the headache entirely. I am also dizzy whenever I move my head and I cannot ride in a vehicle for long. I ignored the dizziness in early 2019 and fell down some stairs, breaking my foot and receiving a nasty head wound. May of 2019 I felt severe pain in my chest when trying to exercise. I was not able to see a specialist until fall that year and she was enraged that I went to see her, I did not understand why, I had never seen her before but she did not believe me, yet she put me on steroids meant for people suffering with COPD and I am still taking them. I had 2 sleep studies of which they both found that I stopped breathing roughly 23 times in a minute. I tried a CPAP for 5 days. It made my headaches and chest pain worse, on the fifth day I ripped it off of my head while sleeping because it was severely disrupting my sleep. The other specialist recommended I spend $3000 on a mouth piece. I never wake with a sore jaw and my breathing issues are 24/7, not just when I sleep. I have been told by roughly 6 specialists that nothing is physically wrong with me, I can tell they believe I am making this up. I crash between 2 to 5 times in a day from 20 minutes to 5 hours at a time and I never feel rested. My Circadian rhythm is out of wack and currently believes I should be sleeping between noon and 6pm. I used to forget simple things once in a while, now I struggle to watch tv or movies due to brain fog. I struggle to pay attention and tasks that I once found simple are now complex and I am unable to complete. It is a good day if I can make breakfast and do the dishes, which I might do half of the time. I used to love to cook, now meals are either supper simple or take out. I bought a $1500 BBQ around 2014 that I would use 3 to 4 times in a week. I have used it around 2 to 3 times this summer to cook hot dogs and plain chicken. I shower between 2 and 3 times in a week because it takes so much energy. I used to shower twice in a day without thinking about it. I was told my heart is in good condition. I just found out that I will no longer receive Canada Pension Plan because my issues are not severe enough. This is no where close to my idea of retirement. I have so many issues that I forget stuff that happens to me. Recently I am getting very sharp pains that go away as fast as it comes on and my hip is really sore when I wake up. I am very lucky to have a wife that is understanding but we are not going to be able to survive on her income alone. I wish I could have brought her or a lawyer with me to my appointments. I needed an advocate. The entire time I am at an appointment I am thinking I need to get home to bed and since I ride in a vehicle to appointments I avoid taking Advil so they can run tests without that being a factor. Since 2018 I have put around 3500km on my truck. I am NOT able to work...
Do you get disability? I'm also not able to work anymore but living off savings. Scared if I don't get normal soon...I need to heal and work so I don't spend more of my savings
I'm sorry I didn't reply sooner, UA-cam is not very good at notifying creators of comments.
That's so much to happen to a person and I'm so sorry your going through that 😔 I'm glad that you have your wife as a support person, that's so important. None of it is easy, but having people be there to advocate and support me has been so helpful.
I don't know much about how the process would work, but I would do some research into if you have a disability program as it could really help you out. The application process is usually very demeaning and takes a long time, but you deserve to have support even when you're ill!
I take my B12 and D-vitamins as a spray to my mouth, under the thong. Highly recommend!
I absolutely need to get back to the under the tongue b-12, thank you for the reminder!
Under your thong? I suppose you mean under your tongue lol