Second holiday for my son. I definately recommend getting into music again. Alex plays the guitar and banjo and his experience has been that working his mind to read the music and play an instrument simultaneously has improved his ability to "recalibrate" when he is feeling triggered. He also has dealt with the not knowing how he is "going" to feel. Over the past months he really has come to accept that this is his life for the moment and looks at the good days with vigor and enthusiasm. The real problem it seems, is the unpredictability of this diagnosis. Try to live the proverbial "one day at a time", Cassey and keep doing these videos. Raising awareness is huge and building your community of like-minded folk, can only be a good thing.
Thanks for watching and commenting. I really am looking forward to music again and I like that thought about reading music and playing and how that works the brain. Very interesting.. Yes I think I need to come to terms with a lot. I kind of feel like Im lowkey in denial about being sick and thinking that any day now ill come out of it but I know thats not the case. Thanks for your kind words.
Similar situation here. It's my first dystonia xmas too and I know it's going to feel different. This one will be a more relaxed event for sure! Definitely pick up an instrument. Playing my guitar is incredibly therapeutic on all levels and I can lose myself for hours, no matter how much I suck at it, lol. I think the key word is 'acceptance' which can take time to begin and I believe is really a constant process to be managed rather than a specific 'breakthrough' moment. Go through the holidays at you're own pace with the support of your partner and don't beat yourself up over the stuff you can't do. Wishing you and your family the best this Christmas.
Hang in there Cassey. Many are challenged at this time of year but please know we are thinking of you as we send blessings to warm your heart and heal your soul. We look forward to seeing you again.
this is my third holiday season since getting sick (started beginning of 2020 but started getting PNES events last year too), can relate to how you're feeling. it can def feel hard to be excited about holidays when you're not totally sure how your baseline works anymore and you know you can't show up to events or gatherings in the way you used to. that adjustment does suck and i'll admit i don't always deal with it gracefully lol. honestly i minimize a lot of obligations around the season, it was what i did last year and is what i'm doing this year. some examples: keeping visits i know will take up energy or trigger symptoms very very short (or eliminating some of them altogether, or replacing them by things like zoom or facetime). i've had to get a lot better at saying "no" to things since all this started which is also hard but can be a lifesaver, otherwise i'm "paying" for overexerting myself for a long time. also finding some activities that make me feel like i can still do things and have good experiences! i play guitar and ukulele and i am now trying to teach myself mandolin. i do think music helps. i don't try to be "good" at these either tbh, i just do it for fun. it helps me connect w my body in a more positive way, vs seeing my body (and brain too) as like my enemy that isn't working the way it used to. everything's still so new tbh, it can be daunting, but this year is easier than the first. i know back then i would've wanted to hear that so i hope sharing it with you and with anyone reading might help. wishing you well this december!
Thank you for sharing a part of your story. I do agree that practicing saying no will be helpful. And im really excited to pick up an instrument. Your advice is super helpful. Thank you for sharing and being a part of the community
Hello, I have no job, very poor health, I am having some serious relationship problems with my marriage, I am not looking forward to Christmas this time, I don’t know how I am going to get through this.
Wednesday on Netflix is fantastic. Just wanted to throw that out there. Thank you for another great video!
Woohoo another Wednesday fan, Thanks for watching!!
Second holiday for my son. I definately recommend getting into music again. Alex plays the guitar and banjo and his experience has been that working his mind to read the music and play an instrument simultaneously has improved his ability to "recalibrate" when he is feeling triggered. He also has dealt with the not knowing how he is "going" to feel. Over the past months he really has come to accept that this is his life for the moment and looks at the good days with vigor and enthusiasm. The real problem it seems, is the unpredictability of this diagnosis. Try to live the proverbial "one day at a time", Cassey and keep doing these videos. Raising awareness is huge and building your community of like-minded folk, can only be a good thing.
Thanks for watching and commenting. I really am looking forward to music again and I like that thought about reading music and playing and how that works the brain. Very interesting.. Yes I think I need to come to terms with a lot. I kind of feel like Im lowkey in denial about being sick and thinking that any day now ill come out of it but I know thats not the case. Thanks for your kind words.
Similar situation here. It's my first dystonia xmas too and I know it's going to feel different. This one will be a more relaxed event for sure! Definitely pick up an instrument. Playing my guitar is incredibly therapeutic on all levels and I can lose myself for hours, no matter how much I suck at it, lol. I think the key word is 'acceptance' which can take time to begin and I believe is really a constant process to be managed rather than a specific 'breakthrough' moment.
Go through the holidays at you're own pace with the support of your partner and don't beat yourself up over the stuff you can't do. Wishing you and your family the best this Christmas.
Thank you for the lovely message and encouraging words!
Hang in there Cassey. Many are challenged at this time of year but please know we are thinking of you as we send blessings to warm your heart and heal your soul. We look forward to seeing you again.
Awe thanks for the love!! I hope we see you guys sometime soon
this is my third holiday season since getting sick (started beginning of 2020 but started getting PNES events last year too), can relate to how you're feeling. it can def feel hard to be excited about holidays when you're not totally sure how your baseline works anymore and you know you can't show up to events or gatherings in the way you used to. that adjustment does suck and i'll admit i don't always deal with it gracefully lol. honestly i minimize a lot of obligations around the season, it was what i did last year and is what i'm doing this year. some examples: keeping visits i know will take up energy or trigger symptoms very very short (or eliminating some of them altogether, or replacing them by things like zoom or facetime). i've had to get a lot better at saying "no" to things since all this started which is also hard but can be a lifesaver, otherwise i'm "paying" for overexerting myself for a long time. also finding some activities that make me feel like i can still do things and have good experiences! i play guitar and ukulele and i am now trying to teach myself mandolin. i do think music helps. i don't try to be "good" at these either tbh, i just do it for fun. it helps me connect w my body in a more positive way, vs seeing my body (and brain too) as like my enemy that isn't working the way it used to. everything's still so new tbh, it can be daunting, but this year is easier than the first. i know back then i would've wanted to hear that so i hope sharing it with you and with anyone reading might help. wishing you well this december!
Thank you for sharing a part of your story. I do agree that practicing saying no will be helpful. And im really excited to pick up an instrument. Your advice is super helpful. Thank you for sharing and being a part of the community
Try decorating your home! ❕❤️❤️❤️
Thats a good idea. I was thinking about painting some decorations or something :)
Hello, I have no job, very poor health, I am having some serious relationship problems
with my marriage, I am not looking forward to Christmas this time, I don’t know how I am going to get through this.
Awe I am wishing you the best Paul. hang in there. Theres a whole community all routing for eachother