Thank you for talking about the importance of not being mad at yourself for missing your goals because of your health. I identify as an “artist” but I haven’t been working on my art much at all lately because of my flare up. It makes me feel even worse about myself but I need to give myself some grace.
If it’s any consolation, I kind of still see myself as an artist/painter even though I’ve taken 2 x 4 year breaks from it (that were not in my control), so I’m glad you still identify as one. Art is patient & non-judgmental and it will always wait for you 💙 whenever you’re ready, you can dive back in ☺️
Yeah the arts and crafts section is interesting. I used to love journaling and writing poetry but I found it too exhausting to continue. For a few years I switched to photography and photographed birds in the garden but then I got too sick to go in the garden and hold up the big camera and edit the photos. So I tried scrapbooking which I loved but cost a ton of energy. So I tried colouring books but just found it super boring. I think finding the right activity hard. But since I’m also a bookworm and can still listen to audiobooks I just focus on that instead. I prioritise life essentials and audiobooks above everything else so even when I’m really bad I usually manage at least a few minutes of audiobooks. I think we have to find a combo of what we can manage and what we love. If I tried embroidery or diamond art I just know I wouldn’t love it so I wouldn’t be willing to prioritise it!
I feel relieved about giving up the diamond art (even tho I barely started) but the embroidery was pretty upsetting to learn I could no longer do it. Photography is a lot harder than people think so I know exactly where you’re coming from with that, I gave that up many years ago too & pleased I did. Agreed, scrapbooking is not a manageable one unless you have either a lot of energy or a lotttt of care hours. Thats really great you’re doing well with audiobooks though ☺️
3:30 was probably the most life changing one of all for me & I’ve never heard anyone say it before, but it’s made me treat myself with a lot more kindness & compassion this year ☺️
Hey! I just came from your video on childhood signs of EDS, I’m 13 and me, my family, and my doctors have speculated I could have it, especially considering it runs in the family and your video really helped me. Watching it I realized how many things I’ve experienced from the EDs criteria. My toes and finger turn white in the cold so Reynolds, I am nauseous all the time, I’m always either too hot or too cold nowhere in between, my hips pop constantly, my shoulders subluxate, I’m hyper mobile and a few other things. Anyhoo the reason I’m commenting is that the small chance you see this I was wondering if you could tell me if I’m just really unathletic or if u had these symptoms too and it turned out to be POTS. Whenever I go up and down stairs I get really winded and feel my heart rate go way wayyy up and it takes a while for it to go back down and for me to catch my breath. Sometimes when I stand up I have to sit back down immediately because I get dizzy and I see spots or my eyesight just blacks out. Also I take a sport and things that are easy for other kids my age I get out of breath fast and dizzy and sometimes blackout too. The reason I’m not sure this is POTS thought it because I’ve never fainted or passed out, even though it’s felt like I might before. Thanks for putting EDS and chronic illness content out by the way, it means a lot to me because my aunt has a really severe case of EDS and POTS and much more and she’s been through so much and she’s love your channel. Sorry this wasn’t quite about this video, I just thought you’d be more likely to see this comment here. Thanks ❤
It sounds like you probably have pots. I’ve only fainted three times in my life but i definitely have pots and I’m in my 20s. Fainting is a very common sign but it’s not the only one. Your other symptoms seem to match.
Hello! I’m so sorry you’re still feeling that way, you’ve gotten through 4 years of feeling this way (that I’m aware of) so I know you have it in you to keep going! & if you’re at rock bottom, the only way is up from there 😊
Thank you ☺️ I barely have any care hours a week despite having the funding for it now, but definitely better than nothing after a yr interviewing people & £400 of my own money spent on ads
I have been enjoying scratch art for a low energy art activity. I just do a couple mins at a time when im well enough. Its easy to pull out my draw and put away when im done
I love your videos, I don't know if I said this before, but I feel like your channel is the best when it comes to chronic illness, your tips are very unique and very useful. Thank you!
I've always used the thing on the end of the jar tool as a ring puller as I have a similar device. Crafts are so exhausting. I've been working on the same cross stitch for 14 years. 😅 M.E is a killer of crafts. My mum was shocked to realise I'd yet to read the book she gave me after a year of having it. lol
Ooh thank you! Thats what I thought about crafts, but I know loads of people with ME who love it! I think most of them have lots of care & family support though & few pets to care for, whereas I know for me & you, we would choose caring for pets above all else, where possible…& you do a damn good job at it ❤️🩹☺️
Glad to see you again!🙂 Thank you for telling us you were joking, I actually thought you were serious. I don’t know if it’s because your humor is different and you joke differently being British-especially with your tone and mannerisms, or if it’s just my brain fog, but I can never tell if you are joking or not.😅 I’m glad I’m not alone in not being able to do crafts. For me it takes a lot of energy and effort (other things like showering are a bit easier for me than for others- everyone is different). I have been saying how much I miss coloring, I can’t because it hurts my hands to hold the pencils and sitting up. I can never find the time to do hobbies I enjoy because I’m using the energy for something else or I’m resting. I did manage to make bracelets with my sisters yesterday and I had so much fun! I recommend jewelry making because you can buy beautiful cheap beading sets online and you can do it in bed while lying down. It still takes energy, but it is an easier craft. Another thing that might be helpful if you are wanting to paint is buying a water brush. It’s a paintbrush that holds water inside it so you don’t have to constantly dip your brush into water and also risk a spill. You could buy a paint brush cleaner too. I was wondering if you or anyone else has any advice on hEDS?I got diagnosed in February, and I continue to get worse. I’ve never dislocated anything but I have subluxations constantly, and they continue to worsen and spread to other joints. I’m worried I’m going to start dislocating. Is there anything I can do to help prevent subluxations? My therapist mentioned exercises but I can’t do those as of now due to low energy. Sorry for the long comment.🫠
As a general rule of thumb, RUclips would never pay a RUclipsr with less than 10K subscribers £1million haha 😂 & thank you so much, I’m so glad you got to make bracelets with your sister & enjoyed it ☺️ were they normal bracelets or did you do the viral Taylor Swift style ones? ☺️
@@GeorginasJourney No I’m not a Swiftie. I do use the same beads (clay beads), but I found that glass beads are the easiest to use. Kits usually come with string,beads,charms, and sometimes scissors. The only extra I buy is glue to seal the knot. I love making them for myself but also for family,friends, or even caretakers and doctors. I can’t help them physically so being able to make something is nice.
@@ruby3200 ah nice! For instability, most people will just recommend splints, braces, KT tape or physio, for the most part, or if you’re particularly worried about a joint, you could ask your dr if you need to be referred to a specialist who can assess whether surgery is needed
@@GeorginasJourney Do those things help with subluxations and popping/cracking or just dislocations? Unfortunately there is no one near me that specializes in EDS so I feel kind of lost and confused about it and don’t really know what to do about symptoms, especially weird ones. It’s like I mention it to doctors and they don’t give me an actual answer whether or not my symptoms are from EDS, and what to do about it. I try to do research online and still feel like I come out empty without answers. 😣It’s starting to frustrate me. Thanks for the advice.🧡
Yes, subluxations also 😊 The reality is, EDS doesn’t have a cure, so even people who see the best specialists in the world, often still suffer immensely from their symptoms & that’s just the way it is. I know many people in that position, including someone who has weekly private physio & from a joint instability perspective, they still struggle & suffer as much as me, even though I have not had the privilege or luck of receiving that sort of treatment. Apart from very severe cases that require surgery, people are sadly not typically seeing as big progress & improvements as you’re implying
Yes! Shark, I think it’s called the Never Change or something like that & has easy slide out filters to remove any fur it’s picked up too (this is different to you having to buy & replace the internal filter every few months, like most alternatives). Very pricey, but it is £50 off atm ☺️
Thank you for talking about the importance of not being mad at yourself for missing your goals because of your health. I identify as an “artist” but I haven’t been working on my art much at all lately because of my flare up. It makes me feel even worse about myself but I need to give myself some grace.
If it’s any consolation, I kind of still see myself as an artist/painter even though I’ve taken 2 x 4 year breaks from it (that were not in my control), so I’m glad you still identify as one. Art is patient & non-judgmental and it will always wait for you 💙 whenever you’re ready, you can dive back in ☺️
Yeah the arts and crafts section is interesting. I used to love journaling and writing poetry but I found it too exhausting to continue.
For a few years I switched to photography and photographed birds in the garden but then I got too sick to go in the garden and hold up the big camera and edit the photos.
So I tried scrapbooking which I loved but cost a ton of energy.
So I tried colouring books but just found it super boring.
I think finding the right activity hard. But since I’m also a bookworm and can still listen to audiobooks I just focus on that instead. I prioritise life essentials and audiobooks above everything else so even when I’m really bad I usually manage at least a few minutes of audiobooks.
I think we have to find a combo of what we can manage and what we love. If I tried embroidery or diamond art I just know I wouldn’t love it so I wouldn’t be willing to prioritise it!
I feel relieved about giving up the diamond art (even tho I barely started) but the embroidery was pretty upsetting to learn I could no longer do it. Photography is a lot harder than people think so I know exactly where you’re coming from with that, I gave that up many years ago too & pleased I did. Agreed, scrapbooking is not a manageable one unless you have either a lot of energy or a lotttt of care hours. Thats really great you’re doing well with audiobooks though ☺️
3:30 was probably the most life changing one of all for me & I’ve never heard anyone say it before, but it’s made me treat myself with a lot more kindness & compassion this year ☺️
Hey! I just came from your video on childhood signs of EDS, I’m 13 and me, my family, and my doctors have speculated I could have it, especially considering it runs in the family and your video really helped me.
Watching it I realized how many things I’ve experienced from the EDs criteria. My toes and finger turn white in the cold so Reynolds, I am nauseous all the time, I’m always either too hot or too cold nowhere in between, my hips pop constantly, my shoulders subluxate, I’m hyper mobile and a few other things.
Anyhoo the reason I’m commenting is that the small chance you see this I was wondering if you could tell me if I’m just really unathletic or if u had these symptoms too and it turned out to be POTS. Whenever I go up and down stairs I get really winded and feel my heart rate go way wayyy up and it takes a while for it to go back down and for me to catch my breath. Sometimes when I stand up I have to sit back down immediately because I get dizzy and I see spots or my eyesight just blacks out. Also I take a sport and things that are easy for other kids my age I get out of breath fast and dizzy and sometimes blackout too. The reason I’m not sure this is POTS thought it because I’ve never fainted or passed out, even though it’s felt like I might before.
Thanks for putting EDS and chronic illness content out by the way, it means a lot to me because my aunt has a really severe case of EDS and POTS and much more and she’s been through so much and she’s love your channel.
Sorry this wasn’t quite about this video, I just thought you’d be more likely to see this comment here. Thanks ❤
It sounds like you probably have pots. I’ve only fainted three times in my life but i definitely have pots and I’m in my 20s. Fainting is a very common sign but it’s not the only one. Your other symptoms seem to match.
Hello! Thank you for this video. I’ve been struggling and have lost all hope at the moment but I enjoy watching your videos.
Hello! I’m so sorry you’re still feeling that way, you’ve gotten through 4 years of feeling this way (that I’m aware of) so I know you have it in you to keep going! & if you’re at rock bottom, the only way is up from there 😊
Lovely to hear from you I know the reason we haven’t is because of health reasons and I hope the carers will make your life easier in the long run 🙏
Thank you ☺️ I barely have any care hours a week despite having the funding for it now, but definitely better than nothing after a yr interviewing people & £400 of my own money spent on ads
I have been enjoying scratch art for a low energy art activity. I just do a couple mins at a time when im well enough. Its easy to pull out my draw and put away when im done
My friend and I were talking about these just the other day!! Fab idea! 💡
I love your videos, I don't know if I said this before, but I feel like your channel is the best when it comes to chronic illness, your tips are very unique and very useful. Thank you!
Oh my gosh, this has made my day, thank you so much ☺️😊
The air purifier is defiantly a good idea especially if you live in the city.
Great idea!
Your art is quite good. I really like your style
Oh thank you! ☺️
I've always used the thing on the end of the jar tool as a ring puller as I have a similar device.
Crafts are so exhausting. I've been working on the same cross stitch for 14 years. 😅 M.E is a killer of crafts.
My mum was shocked to realise I'd yet to read the book she gave me after a year of having it. lol
Ooh thank you! Thats what I thought about crafts, but I know loads of people with ME who love it! I think most of them have lots of care & family support though & few pets to care for, whereas I know for me & you, we would choose caring for pets above all else, where possible…& you do a damn good job at it ❤️🩹☺️
HERRO! 👋😀
Hey! Good to hear from you!! 😊😊😊
Glad to see you again!🙂
Thank you for telling us you were joking, I actually thought you were serious. I don’t know if it’s because your humor is different and you joke differently being British-especially with your tone and mannerisms, or if it’s just my brain fog, but I can never tell if you are joking or not.😅
I’m glad I’m not alone in not being able to do crafts. For me it takes a lot of energy and effort (other things like showering are a bit easier for me than for others- everyone is different). I have been saying how much I miss coloring, I can’t because it hurts my hands to hold the pencils and sitting up.
I can never find the time to do hobbies I enjoy because I’m using the energy for something else or I’m resting.
I did manage to make bracelets with my sisters yesterday and I had so much fun! I recommend jewelry making because you can buy beautiful cheap beading sets online and you can do it in bed while lying down. It still takes energy, but it is an easier craft.
Another thing that might be helpful if you are wanting to paint is buying a water brush. It’s a paintbrush that holds water inside it so you don’t have to constantly dip your brush into water and also risk a spill. You could buy a paint brush cleaner too.
I was wondering if you or anyone else has any advice on hEDS?I got diagnosed in February, and I continue to get worse. I’ve never dislocated anything but I have subluxations constantly, and they continue to worsen and spread to other joints. I’m worried I’m going to start dislocating. Is there anything I can do to help prevent subluxations? My therapist mentioned exercises but I can’t do those as of now due to low energy.
Sorry for the long comment.🫠
As a general rule of thumb, RUclips would never pay a RUclipsr with less than 10K subscribers £1million haha 😂 & thank you so much, I’m so glad you got to make bracelets with your sister & enjoyed it ☺️ were they normal bracelets or did you do the viral Taylor Swift style ones? ☺️
@@GeorginasJourney No I’m not a Swiftie.
I do use the same beads (clay beads), but I found that glass beads are the easiest to use. Kits usually come with string,beads,charms, and sometimes scissors. The only extra I buy is glue to seal the knot.
I love making them for myself but also for family,friends, or even caretakers and doctors. I can’t help them physically so being able to make something is nice.
@@ruby3200 ah nice! For instability, most people will just recommend splints, braces, KT tape or physio, for the most part, or if you’re particularly worried about a joint, you could ask your dr if you need to be referred to a specialist who can assess whether surgery is needed
@@GeorginasJourney Do those things help with subluxations and popping/cracking or just dislocations?
Unfortunately there is no one near me that specializes in EDS so I feel kind of lost and confused about it and don’t really know what to do about symptoms, especially weird ones. It’s like I mention it to doctors and they don’t give me an actual answer whether or not my symptoms are from EDS, and what to do about it. I try to do research online and still feel like I come out empty without answers. 😣It’s starting to frustrate me.
Thanks for the advice.🧡
Yes, subluxations also 😊 The reality is, EDS doesn’t have a cure, so even people who see the best specialists in the world, often still suffer immensely from their symptoms & that’s just the way it is. I know many people in that position, including someone who has weekly private physio & from a joint instability perspective, they still struggle & suffer as much as me, even though I have not had the privilege or luck of receiving that sort of treatment. Apart from very severe cases that require surgery, people are sadly not typically seeing as big progress & improvements as you’re implying
Hi Georgia 😊
Could you recommend an ai purifier please? I'm looking into getting one for my dog as he has breathing issues
Yes! Shark, I think it’s called the Never Change or something like that & has easy slide out filters to remove any fur it’s picked up too (this is different to you having to buy & replace the internal filter every few months, like most alternatives). Very pricey, but it is £50 off atm ☺️
@@GeorginasJourney ahh cool thank you
*air not ai
Shark definitely