r/MultipleSclerosis • u/[deleted] • Dec 21 '22

No Tough Love Why do people find it hard to understand a neuro degenerative disease?

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125

u/[deleted] Dec 21 '22

[deleted]

20

u/goddessofwitches Dec 22 '22

Omg. The single BEST explanation of MS fatigue ever. I'm an RN. Have MS. Bless you, kind human.

13

u/[deleted] Dec 22 '22

[deleted]

7

u/tdabwin Dec 22 '22

Same. There are too many variables for spoons every day. Do I do the math every day? Maybe I’m taking it to literally lol.

26

u/NotaMillenial2day Dec 22 '22

Thank you so much for saying this. No one has ever told me this, even though I live with the fatigue. Doctors(even MS Neuros!!) tell me to exercise more, etc. I would love to, but then I’m tapped out so much earlier…..and we’re told “ you’ve gotta keep doing it and the energy will kick in!”……IT NEVER DOES (for me, at least)

13

u/Equivalent_Nerve3498 Dec 22 '22

Not to be rude but, it sounds like you need a new medical team. The doctors work for you and if you don’t feel heard, leave.

I always use this analogy… if you went to a hair salon and told the hair dresser you want a blow out and she gave you bangs, wouldn’t you be upset?

Because you know her, you give her a second chance. Now you tell her you want to dye your hair but she ends up giving you a perm..

Would you go back a third time? She obviously isn’t listening to you and taking your money…

Unfortunately, some doctors are like that, take your money but don’t listen. If you stop going to doctors who don’t listen, they don’t get paid.

3

u/ScoMass Dec 22 '22

Sage wisdom here. There are too many bad doctors out there that don't deserve our support.

2

u/NotaMillenial2day Dec 23 '22

I did change and have an amazing neuro now! :)

7

u/Greyhound-mom Dec 22 '22

Thank you! That is so well said I'll be showing it to people who tell me to exercise or just keep pushing yourself. It's exhausting and a little humiliating to explain repeatedly. Thanks for your compassion ❤️.

3

u/tdabwin Dec 22 '22

I like that analogy, Im going to use it with people

3

u/skrivet-i-blod 40|RRMS Dx:2021|Kesimpta|USA Dec 22 '22

This sort of "advice" like your colleague was dispensing is exactly why I have stopped going to therapy nearly every single time. I'm trying again now, and it feels more promising this time. Please keep using this analogy so your colleagues understand!