I love that song and it says so much about how we with MS are feeling. I was diagnosed at 21 after an Optic Neuritis and I’m now 62. I’ve been fighting the good fight for over 40 years and yes, you’re right, just because we look “normal” doesn’t mean we are. My MS has moved from RRMS to SPMS in the last 12 months, but even two neurologists can’t agree on that, so I’m somewhere in “nowhere land” at the moment. Having this damn disease is frustrating enough without all the ******it being thrown around. Even my friends who know that I’ve had MS for so long greet me with “you look so well” when I know that my brain fog and fatigue is almost overwhelming. Sometimes I just want to lock myself in my home and never venture out, but that’s not going to work either. Ah well, I’ll just keep plodding along and fighting to stay sane lol. Hope things are well for you my friend. Shelley from Australia 👍🥰
Great story Shelley! Thanks for the insightful comment. What is your most important lesson that you would tell someone about living with MS long term? Btw.. my son wants to visit Australia, he is obsessed with Bluey. :)
@@nievesab12 I agree, mental health consideration or lack there of is incredibly frustrating. See my latest video for my rant about it. Haha. Thanks for the comment!
Thanks!! I'm not sure if I put it on the reddit forum. Every time I do, the moderators delete it. I guess sharing knowledge is self promotion in the eyes of some? :)
Really well put together...a cool way to spread the knowledge. Thanks for making it!
Thanks! Just posted a new one to highlight the joys of drug prices for this disease. Enjoy!
I love that song and it says so much about how we with MS are feeling. I was diagnosed at 21 after an Optic Neuritis and I’m now 62. I’ve been fighting the good fight for over 40 years and yes, you’re right, just because we look “normal” doesn’t mean we are. My MS has moved from RRMS to SPMS in the last 12 months, but even two neurologists can’t agree on that, so I’m somewhere in “nowhere land” at the moment. Having this damn disease is frustrating enough without all the ******it being thrown around. Even my friends who know that I’ve had MS for so long greet me with “you look so well” when I know that my brain fog and fatigue is almost overwhelming. Sometimes I just want to lock myself in my home and never venture out, but that’s not going to work either. Ah well, I’ll just keep plodding along and fighting to stay sane lol. Hope things are well for you my friend. Shelley from Australia 👍🥰
Great story Shelley! Thanks for the insightful comment. What is your most important lesson that you would tell someone about living with MS long term? Btw.. my son wants to visit Australia, he is obsessed with Bluey. :)
the mental health is the real gaslighting. Maybe I am just fatigue and cant get things done so it feels like its anxiety but its just the fatigue.
@@nievesab12 I agree, mental health consideration or lack there of is incredibly frustrating. See my latest video for my rant about it. Haha. Thanks for the comment!
🙌 love the creativity. Great to see that you’re not letting ms take that from you. Did you post it back to the reddit post?
Thanks!! I'm not sure if I put it on the reddit forum. Every time I do, the moderators delete it. I guess sharing knowledge is self promotion in the eyes of some? :)
Why don't you make a little effort?
HAHA!! Nice.