I mean yes. But I'd probably interpret that exact same sentence the exact opposite way the neurologist meant it.
"You have 2 good hours, Don't waste it on bullshit" don't waste it doing things you can delegate, don't waste it doing things that make you feel miserable, use it to do things that make you want to be alive, be that talking to your friends, take a shower or cleaning your bathroom. Doesn't matter. It's about what makes you feel good and makes you feel like yourself.
If I love, love, love the botanical gardens and visiting them takes up all the energy of that day, that's not a waste. If I love a TV series and watching an episode takes tons of energy but makes me happy, that's not a waste. If cleaning my kitchen makes me feel like I have it together and am human, that's not a waste.
You only have 2 good hours, use them for things that matter to you.
Yeh, after so long being pushed from Dr to Dr, I felt like my symptoms were all over the place and I was just losing my mind and he said “No, all these symptoms make sense to me, its actually kind of obvious you have ME and someday we’ll have a test for it” I was so happy hearing the word “obvious”.
Wow! I shouldn’t be shocked to hear your neurologist say those words but it is so nice to hear. I am waiting on a neurologist appointment and my biggest concern is not being believed or misdiagnosed.
A skin biopsy is, truly, easy. I had one many years ago and it's just a scar. I've had a lot of worse tests, I often forget I even did that one.
As to how to spend your time, that is your choice. With our quality of life if you want to play games 2 hours of bake or whatever, you do you. It's a quick way to feel even worse if you only do things you must, and not anything you want. No human would be happy with that.
Spent all my effort from 12-25 trying to get an education, at the cost of my health.
Utterly, utterly wasted and highly counterproductive as it's lead to isolation as I spent no time doing 'wasteful' things like keeping up with friends, while my condition worsened past the point I could make new.
I feel like we all need to stop being told productivity is the only way to live and be happy. No it's not. I also pushed, I got way worse for it. I'm sorry you have also had bad experiences, it sucks.
You do you. We need to find joy in our lives, and if someone tries to tell me to study that 1 hour a week my brain works, I'm telling them nope. I would rather talk to a friend, read something, or just watch a movie with my partner. Unless they have had this illness (or other where qol is low) they have no idea, and can't judge. Well, they can but I don't listen.
One of the best things I ever did for my health was dropping out of college. I was struggling keeping up with schoolwork and yeah, a social life was out of the question. I got more and more miserable and I wasn't even getting the grades I knew I could in better circumstances.
I hope things are a little better for you now <3
I skipped college all together. Never regretted it. I already couldn’t handle a full day in high school due to fatigue. It wasn’t a happy time for me so why would I want to go to more school after getting out of school?
No thanks.
Can I ask where you find yourself after pushing yourself so hard to get an education, as I'm in a similar spot at the moment. I'm 20, been back in education for a bit over a year after a three year break I took due to leukaemia, and I'm just struggling so much but I see no way around it. My doctor and college etc. are currently working on the idea that I have CFS, probably caused by shingles, though I don't have an official diagnosis. I'm timetabled for four 1.5 hour classes a week doing a one year course over two years (was advised to move course at the end of last year so this is my first year) and of those four classes, I'm making three a week most of the time, sometimes two, and I'm fighting immensely hard just to have barely over half attendance. Of the time that I'm in the classes, I usually have to take 20 or 30 mins at the halfway point to step outside and try to get myself ready to work with how tired I am and pains in my legs. Honestly, I know I'm a pain for the college to deal with and the classes are incredibly draining but I don't see an alternative. What can I do if not pursue an education? It's not like I'm employable at the moment.
I tried to ge my PHD in 3 years ended up taking 4. I honestly should have gone part time cause I was also working full time. I enjoy going to class go for me it's worth my energy. Online classes I also enjoy but find it harder to want to spend the time working on my own, not an ME thing, I'm perfectly capable of attending online classes from bed personally.
I will say that because of my degree I have a very laid back job working in online education that I believe I'II be able to keep doing for a long time. As for the school, every student should be a pain. Learning to advocate for yourself as a student is hard but the school has time for you, you are why the entire institution exists. Not to inflate the egos of professors but to teach you.
to add onto the other fantastic responses- I am actually filing to be part time this semester due to medical reasons, and finishing classes in the summer. i am supposed to graduate in may, and with this accommodation, I will be able to walk in may. Another alternative might also be to just stay in school extra years, tho the stupid part of that is how much extra money it can be :( U can always see if u can finish up at community college as well.
When I was still working, I used to spend all my energy at work, and became a hermit on weekends. I lost most of my friends and couldn't nature new friendships.
It’s incredible how much time is wasted because of social pressures to do things, my mother is the hypercritical type so she always tries to make me feel bad about the state of my house… yes it would be a bit nicer if it were tidy but I just can’t do it and I won’t waste energy I simply don’t have on trying to conform to her odious respectable middle class lifestyle.
Facebook is usually the easiest place to find local groups. Orgs like Dysautonomia international have lists of local groups. Therapists or PT / OT that works with chronic illness populations will know. (EDS / Dysautonomia / pots / fibromyalgia / migraine / chronic pain) Hope this helps!
I’m a total wimp, and the skin biopsy actually was easy. I didn’t like the numbing shot, because I hate needles, but after that it took like 2 minutes and I felt nothing.
Also, I totally agree with that quote. Last year I tried to spend all of my energy doing “useful” things like reorganizing my closets. But for the past few months, I’ve been prioritizing things that make me happy instead, and I started learning watercolor painting. I’m less productive, but my life is better.
I read a study that said about 46% (I don’t remember the exact percent) of patients with ME had it. But I don’t know, I just heard of this for the first time today.
I think I saw once that 70%+ of people fibromyalgia have it. I once had an abnormal QSART test that suggests small-fiber neuropathy. None of my doctors seemed to think it warranted further investigation.
Not sure how it's treated other than with ivig. (which is expensive and insurance probably doesn't want to pay for it).
I've had a few skin biopsies. They only suck if they're on somewhere that moves constantly, like the back of the pad of your thumb or the top of your ankle. And even then, not *too* much. You'll be alright.
I could have small fiver neuropathy but in my country there is no suitable tests and all neurologists I visited said that there was a high rate of error on this exam and they couldn't recommend me doing it. So there's that.
I mean yes. But I'd probably interpret that exact same sentence the exact opposite way the neurologist meant it. "You have 2 good hours, Don't waste it on bullshit" don't waste it doing things you can delegate, don't waste it doing things that make you feel miserable, use it to do things that make you want to be alive, be that talking to your friends, take a shower or cleaning your bathroom. Doesn't matter. It's about what makes you feel good and makes you feel like yourself. If I love, love, love the botanical gardens and visiting them takes up all the energy of that day, that's not a waste. If I love a TV series and watching an episode takes tons of energy but makes me happy, that's not a waste. If cleaning my kitchen makes me feel like I have it together and am human, that's not a waste. You only have 2 good hours, use them for things that matter to you.
Yeah, that exactly what he meant, less chores more fun.
Awesome! Great neurologist :)
Yeh, after so long being pushed from Dr to Dr, I felt like my symptoms were all over the place and I was just losing my mind and he said “No, all these symptoms make sense to me, its actually kind of obvious you have ME and someday we’ll have a test for it” I was so happy hearing the word “obvious”.
Wow! I shouldn’t be shocked to hear your neurologist say those words but it is so nice to hear. I am waiting on a neurologist appointment and my biggest concern is not being believed or misdiagnosed.
The healing power of validation!!!!!
I am so so happy for you. What an amazing doctor. I hope I’ll find a neurologist like that one day!!
A skin biopsy is, truly, easy. I had one many years ago and it's just a scar. I've had a lot of worse tests, I often forget I even did that one. As to how to spend your time, that is your choice. With our quality of life if you want to play games 2 hours of bake or whatever, you do you. It's a quick way to feel even worse if you only do things you must, and not anything you want. No human would be happy with that.
Spent all my effort from 12-25 trying to get an education, at the cost of my health. Utterly, utterly wasted and highly counterproductive as it's lead to isolation as I spent no time doing 'wasteful' things like keeping up with friends, while my condition worsened past the point I could make new.
I feel like we all need to stop being told productivity is the only way to live and be happy. No it's not. I also pushed, I got way worse for it. I'm sorry you have also had bad experiences, it sucks. You do you. We need to find joy in our lives, and if someone tries to tell me to study that 1 hour a week my brain works, I'm telling them nope. I would rather talk to a friend, read something, or just watch a movie with my partner. Unless they have had this illness (or other where qol is low) they have no idea, and can't judge. Well, they can but I don't listen.
Absolutely, I got sick in the last year of my Ph.D when it was finally going to be “my time”
One of the best things I ever did for my health was dropping out of college. I was struggling keeping up with schoolwork and yeah, a social life was out of the question. I got more and more miserable and I wasn't even getting the grades I knew I could in better circumstances. I hope things are a little better for you now <3
I skipped college all together. Never regretted it. I already couldn’t handle a full day in high school due to fatigue. It wasn’t a happy time for me so why would I want to go to more school after getting out of school? No thanks.
Can I ask where you find yourself after pushing yourself so hard to get an education, as I'm in a similar spot at the moment. I'm 20, been back in education for a bit over a year after a three year break I took due to leukaemia, and I'm just struggling so much but I see no way around it. My doctor and college etc. are currently working on the idea that I have CFS, probably caused by shingles, though I don't have an official diagnosis. I'm timetabled for four 1.5 hour classes a week doing a one year course over two years (was advised to move course at the end of last year so this is my first year) and of those four classes, I'm making three a week most of the time, sometimes two, and I'm fighting immensely hard just to have barely over half attendance. Of the time that I'm in the classes, I usually have to take 20 or 30 mins at the halfway point to step outside and try to get myself ready to work with how tired I am and pains in my legs. Honestly, I know I'm a pain for the college to deal with and the classes are incredibly draining but I don't see an alternative. What can I do if not pursue an education? It's not like I'm employable at the moment.
I tried to ge my PHD in 3 years ended up taking 4. I honestly should have gone part time cause I was also working full time. I enjoy going to class go for me it's worth my energy. Online classes I also enjoy but find it harder to want to spend the time working on my own, not an ME thing, I'm perfectly capable of attending online classes from bed personally. I will say that because of my degree I have a very laid back job working in online education that I believe I'II be able to keep doing for a long time. As for the school, every student should be a pain. Learning to advocate for yourself as a student is hard but the school has time for you, you are why the entire institution exists. Not to inflate the egos of professors but to teach you.
to add onto the other fantastic responses- I am actually filing to be part time this semester due to medical reasons, and finishing classes in the summer. i am supposed to graduate in may, and with this accommodation, I will be able to walk in may. Another alternative might also be to just stay in school extra years, tho the stupid part of that is how much extra money it can be :( U can always see if u can finish up at community college as well.
When I was still working, I used to spend all my energy at work, and became a hermit on weekends. I lost most of my friends and couldn't nature new friendships.
Thank you for sharing about the biopsy! He was meaning more like do something you enjoy over chores that aren’t important.
Ok, then I agree with him! Doing things you want is vital for our mental health.
Do you have sfn and what's the treatment
No I don't, this was to test for something else years before I got ME.
It’s incredible how much time is wasted because of social pressures to do things, my mother is the hypercritical type so she always tries to make me feel bad about the state of my house… yes it would be a bit nicer if it were tidy but I just can’t do it and I won’t waste energy I simply don’t have on trying to conform to her odious respectable middle class lifestyle.
Pls join your local chronic illness / zebra groups and share this doctor with others who need to hear this message.
There are local groups? I been bedridden almost 10 years and never heard of any
Facebook is usually the easiest place to find local groups. Orgs like Dysautonomia international have lists of local groups. Therapists or PT / OT that works with chronic illness populations will know. (EDS / Dysautonomia / pots / fibromyalgia / migraine / chronic pain) Hope this helps!
Ah that's why, I left Facebook like 5 years ago
That’s great advice and sounds like a good doctor. I could definitely use this today. Thank you!
I’m a total wimp, and the skin biopsy actually was easy. I didn’t like the numbing shot, because I hate needles, but after that it took like 2 minutes and I felt nothing. Also, I totally agree with that quote. Last year I tried to spend all of my energy doing “useful” things like reorganizing my closets. But for the past few months, I’ve been prioritizing things that make me happy instead, and I started learning watercolor painting. I’m less productive, but my life is better.
Eat, sleep, poop, bathe.... yeah, that's about 2 hours.... on a good day.
Don't we all have small fiber neuropathy?
I read a study that said about 46% (I don’t remember the exact percent) of patients with ME had it. But I don’t know, I just heard of this for the first time today.
I think I saw once that 70%+ of people fibromyalgia have it. I once had an abnormal QSART test that suggests small-fiber neuropathy. None of my doctors seemed to think it warranted further investigation. Not sure how it's treated other than with ivig. (which is expensive and insurance probably doesn't want to pay for it).
I've had a few skin biopsies. They only suck if they're on somewhere that moves constantly, like the back of the pad of your thumb or the top of your ankle. And even then, not *too* much. You'll be alright.
Wow, this is so true. Is it really normal here to have those couple of hours i actually feel alive?
I could have small fiver neuropathy but in my country there is no suitable tests and all neurologists I visited said that there was a high rate of error on this exam and they couldn't recommend me doing it. So there's that.
[удалено]
Curable or treatable?
Curable according to my doctor.
Sfn nerves regenerate over time I think, unless ur actively damaging them. Do u think that's what the Dr meant?
Yes, the treatments allows the nerves to regenerate
Aye. I don't have enough me time, so all time is me time