As a teenager with chronic pain and fatigue from Ehlers-Danlos syndrome, the best 80 dollars I ever spent was for a walking cane with a handle shaped like a raven. I can't begin to describe how much more confident an aesthetically pleasing mobility aid made me!
Thanks so much for making this channel. There's not a lot of channels like this out there. Do you ever get brain fog and find it hard to do cognitive tasks? Or find it hard to find the right words to express yourself? Your GP tip is so true, but so hard to find. I've heard "there's nothing wrong with you", "you just lack motivation", "tiredness is a symptom of your depression". Being gaslit by doctors is a real thing and it's so disheartening. The "don't try to be normal" is a really important one and it's something I really struggle with. I just feel like "normal people" are judging me for not doing enough and it's difficult to feel a part of society. Do you still have "regular people" friends or have you found more of a sense of community with people with illnesses? I lost touch with my regular friends because I had to say "no" to doing most things. and it felt like we didn't have much in common anymore.
Wanting to be "normal", as in healthy, is a very natural thing and part of the grieving process that comes with a chronical condition. It's not ridiculous at all. You've got this new illness, that brings a lot of things into your life that are unpleasant. Wanting to at least appear "normal" in the midst of all that can be a way to cope, to let yourself be the person you used to be and get the focus off all the things that are happening to you, if only for a moment or two. It takes time to adapt to something as life changing as a chronical illness. When you are ready to let people around you know, you can tell them, the important thing is that you are comfortable sharing that part of your life. I've been ill for five years. It took some time before I was ready to share how my illness affects me to the people around me. I still don't tell new people sometimes. It depends on how well we know each other, what type of relationship we have, weather I like the person or not and what situation we are in at the moment. My point is. Every chronically ill person is different, every relationship is different and if and when you tell somebody depends on a lot of things. And sometimes, you just don't want to get into it all - explaining can be exhausting too. Sometimes it's good enough to say "I'm exhausted, I need to sit"
Sounds like you have a great community around you. I'm still trying to be normal because nobody believed me, everyone I thought cared refused to help and understand and I've been left to homelessness and...
@@johnkimball5872 Yeah! Crazy Right? Actually, it's more like going to bed feeling great & waking up feeling like you've been hit by a car, you have a really bad flu and a cold on top of it & even though you slept hard, it feels like you've been up for days. But, there are things to do, people to see and a paycheck to earn, so you drag yourself through life. At some point, you're walking along & your legs stop & you can't move an inch. You go to all the doctors in town & NOBODY knows what ME/CFS is or how to treat it. Along comes Covid-19, which (in some can turn into ME/CFS (for those who didn't have it before) or it can make your symptoms of ME way worse. Just ask me! It robbed me my childhood, teens & 20s to age 60. My dreams of retiring & traveling have been shattered. All from a little virus...
Thank you for sharing your knowledge with us 🙏 Unfortunately i’m developing ME/CFS myself and this info was very helpful for me! Especially i struggle with tip 3 cause everytime i mention my chronic illness nobody understands and shrugs it off as inconsequential so i feel a lot of shame and and dispair so i often try to act ‘normal’ I don’t know if your religious but may god bless your soul and take you to the highest level of success
Good advice, having a good GP is so important. Looking normal is hard, but I understand as a teenager it must’ve been so hard. All of your advice is spot on ❤
I am so grateful for your experience tips and knowledge. Thank you for taking the time to do this. I feel not alone now more accepting of m/e. Been diagnosed 6 months ago 58 years old. Bless you 💫
Hey, I've got a question and I'm wondering if anyone can help? I'm 16, and i was hosptalised with a sort of flu triggered asthma attack, but with that, I've had all the symptoms of ME/CFS for 3 months now. The doctors havent brought it up but nothing has shown up in my bloods so theyre not believing me. How can i bring up ME/CFS being a possibility without seeming like I'm self diagnosing? On days when its not too bad, i still have to use a walking stick to get around and cant really do stairs, I'm always weak and dizzy, and so tired. Im feeling the pressure of college- i cant do work let alone homework. Ive had time off. I used to do long distance running- now i can barely work. On bad days, like today and all of this week, I'm basically bedbound. I can barely walk a few meters to the bathroom without collapsing. I get nausea, so i cant eat very well either. It feels like i cant do anything
If you've just been diagnosed these tips are really helpful! (At least Ive found it in my experience too. Ovs not a doctor though) Thanks so much for making this video Elinor. I defo think these are needed to be said :)
thank you ... not sure if I agree with the mobility aid ... it is like accelerating and making a vision how the illness will unfold ... my previous manager had CFS in addition to another autoimmune illness yet she walked around the workplace on days she was at work .. I d say lets people see their own progress ... btw, when I go outside walking with people and I can't keep up, they go .. maybe ur age and the people at your age are less selfish .. that feeling of seeing people go and go until their disappear and wait! beside the parking hits hard..
your right that not everybody with ME/CFS needs a mobility aid, i just mean that people should be more aware of the option to get one if they need them!!
It’s abit more then “just tired” try waking up no matter what sleep health techniques you try or within an hour or 2 of being awake you get all your energy sapped out of you it’s far more complicated then “just tired”
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As a teenager with chronic pain and fatigue from Ehlers-Danlos syndrome, the best 80 dollars I ever spent was for a walking cane with a handle shaped like a raven. I can't begin to describe how much more confident an aesthetically pleasing mobility aid made me!
aesthetics can be so important!
Thanks so much for making this channel. There's not a lot of channels like this out there. Do you ever get brain fog and find it hard to do cognitive tasks? Or find it hard to find the right words to express yourself? Your GP tip is so true, but so hard to find. I've heard "there's nothing wrong with you", "you just lack motivation", "tiredness is a symptom of your depression". Being gaslit by doctors is a real thing and it's so disheartening.
The "don't try to be normal" is a really important one and it's something I really struggle with. I just feel like "normal people" are judging me for not doing enough and it's difficult to feel a part of society. Do you still have "regular people" friends or have you found more of a sense of community with people with illnesses? I lost touch with my regular friends because I had to say "no" to doing most things. and it felt like we didn't have much in common anymore.
Wanting to be "normal", as in healthy, is a very natural thing and part of the grieving process that comes with a chronical condition. It's not ridiculous at all. You've got this new illness, that brings a lot of things into your life that are unpleasant. Wanting to at least appear "normal" in the midst of all that can be a way to cope, to let yourself be the person you used to be and get the focus off all the things that are happening to you, if only for a moment or two. It takes time to adapt to something as life changing as a chronical illness. When you are ready to let people around you know, you can tell them, the important thing is that you are comfortable sharing that part of your life.
I've been ill for five years. It took some time before I was ready to share how my illness affects me to the people around me. I still don't tell new people sometimes. It depends on how well we know each other, what type of relationship we have, weather I like the person or not and what situation we are in at the moment. My point is. Every chronically ill person is different, every relationship is different and if and when you tell somebody depends on a lot of things. And sometimes, you just don't want to get into it all - explaining can be exhausting too. Sometimes it's good enough to say "I'm exhausted, I need to sit"
beautiful words 🙏may god bless your soul
Sounds like you have a great community around you. I'm still trying to be normal because nobody believed me, everyone I thought cared refused to help and understand and I've been left to homelessness and...
im sorry, hope youre doing ok!
You couldnt work due to fatigue?
@@johnkimball5872 Yeah! Crazy Right?
Actually, it's more like going to bed feeling great & waking up feeling like you've been hit by a car, you have a really bad flu and a cold on top of it & even though you slept hard, it feels like you've been up for days.
But, there are things to do, people to see and a paycheck to earn, so you drag yourself through life.
At some point, you're walking along & your legs stop & you can't move an inch.
You go to all the doctors in town & NOBODY knows what ME/CFS is or how to treat it.
Along comes Covid-19, which (in some can turn into ME/CFS (for those who didn't have it before) or it can make your symptoms of ME way worse.
Just ask me! It robbed me my childhood, teens & 20s to age 60.
My dreams of retiring & traveling have been shattered.
All from a little virus...
@@barbarateresarhiannonsreal1756 oh no thats horrible. I think i have it too. I cant stand or work long.
@@johnkimball5872 I hear you, I hope it gets better.
Thank you so much. Almost 2 years in to long COVID and learning I have ME/CFS and post exertion malaise.
Thank you for sharing your knowledge with us 🙏 Unfortunately i’m developing ME/CFS myself and this info was very helpful for me!
Especially i struggle with tip 3 cause everytime i mention my chronic illness nobody understands and shrugs it off as inconsequential so i feel a lot of shame and and dispair so i often try to act ‘normal’
I don’t know if your religious but may god bless your soul and take you to the highest level of success
Good advice, having a good GP is so important.
Looking normal is hard, but I understand as a teenager it must’ve been so hard.
All of your advice is spot on ❤
What an excellent video with great advice on how to take care of ourselves while living with ME/CFS. Thank you so very much for sharing. ❤
I am so grateful for your experience tips and knowledge. Thank you for taking the time to do this. I feel not alone now more accepting of m/e. Been diagnosed 6 months ago 58 years old. Bless you 💫
I love your five tips. This gives me hope and guidance.
Thank you for making this. Ive just started my journey to gettimg diagnosed
I'm happy to be able to help a little!!
Hey, I've got a question and I'm wondering if anyone can help? I'm 16, and i was hosptalised with a sort of flu triggered asthma attack, but with that, I've had all the symptoms of ME/CFS for 3 months now. The doctors havent brought it up but nothing has shown up in my bloods so theyre not believing me. How can i bring up ME/CFS being a possibility without seeming like I'm self diagnosing? On days when its not too bad, i still have to use a walking stick to get around and cant really do stairs, I'm always weak and dizzy, and so tired. Im feeling the pressure of college- i cant do work let alone homework. Ive had time off. I used to do long distance running- now i can barely work. On bad days, like today and all of this week, I'm basically bedbound. I can barely walk a few meters to the bathroom without collapsing. I get nausea, so i cant eat very well either. It feels like i cant do anything
If you've just been diagnosed these tips are really helpful! (At least Ive found it in my experience too. Ovs not a doctor though) Thanks so much for making this video Elinor. I defo think these are needed to be said :)
Thanks for sharing!! 💖💖
thank you ... not sure if I agree with the mobility aid ... it is like accelerating and making a vision how the illness will unfold ... my previous manager had CFS in addition to another autoimmune illness yet she walked around the workplace on days she was at work .. I d say lets people see their own progress ...
btw, when I go outside walking with people and I can't keep up, they go .. maybe ur age and the people at your age are less selfish .. that feeling of seeing people go and go until their disappear and wait! beside the parking hits hard..
your right that not everybody with ME/CFS needs a mobility aid, i just mean that people should be more aware of the option to get one if they need them!!
People don't know anything about chronic fatigue syndrome you're tired that's your diagnosis
It’s abit more then “just tired” try waking up no matter what sleep health techniques you try or within an hour or 2 of being awake you get all your energy sapped out of you it’s far more complicated then “just tired”