This is me today! Wishing you better days and smiles, thanks for showing what it’s like. Sometimes I send your videos to my friends to help them understand and it’s been so helpful 🥰.
I just found your channel, but I have fibromyalgia,ms, thyroid issues, fatigue, and more. Eating is hard since I don't get hungry. I am a caregiver for my finance. Mark has congestive heart failure. I've been sick since I was 23. I'm 50 now. It's not easy.
Aw, thanks for sharing! I've wondered too what to film for flare days, but it's all part of the journey. It was so nice seeing your friend and hearing you joking. I'm gonna run a bed marathon, lol. That is totally my speed. :)
Yep that's a flare day. I'm coming out of one that started last week so hopefully I can do some brewing later in the week and if not it will have to wait until the next week. Great to see you have good friends in your videos who support you. Excellent. With CFS we don't swim upstream we go with the flow. Cheers and take care 😎👍
Thank you for sharing a flare day with us, I know it is not easy filming when you are poorly. I know it is not related to this video (well it is kind of), but I wanted to ask if you can have a pacemaker for your SVT or are you too sick with your EDS to have it done? My SVT was in one place so I had it fixed but I know you said yours is more complicated. I know it’s not a fix as you have PoTS too and EDS and CVS. My PoTS is still there and I have mild CVS symptoms but not like I did when I was a child. I also have moderate ME. I’m looking for work that will make accommodations but it is not simple especially since covid made it difficult for everyone to work. Lots of love hun 💜you really inspire me to carry on. You have so much to deal with and you do it with such strength.
Hope you're feeling a bit better now! So glad you have such a wonderful friend. I'm not feeling super great today ... and a family member decided to yell at me instead of being kind 😢
3:11 Then the camera must be turned right about 90 degrees. ;-) This video is a good way to show that "being there for someone" can mean all kinds of things.
Hi Georgina! I hope things aren't doing too bad! 😢 May I ask you on what medications you are/were and if you have some kind of therapy for your disease? If so, are they working a bit? Are there actually some strategies to overcome some of these symphtoms? I'm currently studying to became a nurse, second year. Thank you if you want and can answer, if you are not too sick and tired! Sending you the best wishes and greetings from Italy❤😊
I stay at the flare up but not as bad as hers is if I take my medication right, I may have 2-6 good hrs but then I’m so exhausted it takes 3-4 days to get back to where I can go to the bathroom but I have to always be in a Transport chair or wheelchair, I was using a standup Walker but within 10 minutes I would start Blacking out or be so weak My Husband had to help me get back in bed or sit down real fast, having POTS has totally changed my life, I’m in bed most all days because of being so exhausted
Do you ever find that when your POTS acts up it’s difficult to pass stool? My rate goes up to 180-190 when the episode is really bad even on beta blockers It’s difficult to explain to people
Sorry you’re going through that, that can happen, yes- you may need to increase your dose or add another medication to help it, so could be worth booking a doctors visit to discuss it with them
@@GeorginasJourney thank you so much for replying I’m in the middle of a bad flare and your video really helped. 🙏💜 keep doing what you’re doing 🫶🏼💪🏼 stay blessed
I totally understand what your saying, POTS is terrible I’ve had it for 2+ yrs and keeps getting worse & my Dr increased the dosage of the Beta Blocker but I’m so sensitive to medication that he had to put me back on the lowest dose, I hope You I prove or it just goes away, 😔🙏🏻
HI friend! I also have POTS and ME/CFS and share my journey on YT! I would love to connect and maybe do a collab together! I also have a CZcams channel with 6k subs. I'd love to be friends and collab!
Thank you, I still have flare ups like these, but unfortunately life in general has got so bad for me that my health is the least of my worries these days 😅
@@redhairedviking2657 this video explains a bit of it, I became homeless after finishing university & things got worse from there: czcams.com/video/RcRAhFFthz4/video.html
@@GeorginasJourney I actually watched. I would donate, but I've had to move in with my parents after getting laid off triggered everything after I got mono back in January. You can't call the cops for them being too loud?
@@redhairedviking2657 Oh I wasn’t wanting you to donate, I was just answering your question! No, because they’re not the issue, the issue is the building itself, they’re allowed to make noise in their own home, the issue is the way the building amplifies it into my property & how it rattles the blinds completely off the walls, & door & light fixtures. & it’s not just the noise related stuff, it’s the fact I have no support, I can’t manage my care needs on my own, I can rarely leave as my flat’s not wheelchair accessible & I barely ever see anyone
Sorry if this is obvious but when you're in bed all day are u sleeping? Or can do things like watch TV play on phone ? You're friend seem nice and understanding im glad you have her.
It varies, with POTS flare ups, sometimes I can go on my phone, other times I can’t do anything at all & I occasionally end up in Resus in hospital. In a CVS flare up, I can’t speak, move, use my phone or watch a movie.
I’d like a room tour! 🥰 you have a good friend 💜 I have a question I hope it’s not too personal but do you have a foley cath? I just had to get one due to neurogenic bladder :(
Hi! My doctors couldn’t figure it out for over 3 years & they even missed several red flags, like the fact my resting (lying down) heart rate was 125-130 on all of my ECGs. I then went back to my doctors after being sick for 3 years & asked if I could be tested for pots. In that appointment, the doctor did some simple tests using a pulse oximeter & I was referred to cardiology (I got given an urgent referral due to some other stuff that was missed on my past ECGs). So for me, it took about 3.5 years, but I was only diagnosed so quickly because I noticed the signs myself & asked to be tested
@@Kaazzaam88 mine is caused by a genetic condition called EDS, so it can’t help me as my problem is in my DNA-the cause of illness is important for determining whether programs like that can be helpful or not
I’ve uploaded 1 video a week for the past 2 months. I can’t do any more than that because I’m chronically ill & a full time university student. And I’m not uploading at the moment because I’m too sick.
Hey dude. I enjoyed your content so much. You most definitely need to put out more vids. The skit at 1:30 is my fav. You have to film with Bad Friends! Their stuff are like the Vlog Squad mixed with Casey Neistat. Go check their page out and give them a subscribe! 👉 #SurpriseBadFriends
I hope you’re feeling much better after your flare day Georgina. Take care now.
Hate a flare day.... you want to be productive but your body just won’t let you. Best thing is to do what your body wants to and you recover faster.
Very wise advice!
This is me today! Wishing you better days and smiles, thanks for showing what it’s like. Sometimes I send your videos to my friends to help them understand and it’s been so helpful 🥰.
I just found your channel, but I have fibromyalgia,ms, thyroid issues, fatigue, and more. Eating is hard since I don't get hungry. I am a caregiver for my finance. Mark has congestive heart failure. I've been sick since I was 23. I'm 50 now. It's not easy.
Thank you for being so open honey and I'm so glad you have friends to look after you xx
thank you xx
Thanks for sharing, I have a lot of flare days and my regular days look a lot like this. Makes me feel less alone!
My regular days aren’t much different to this either- I probably should have mentioned that, sorry! And I’m happy to hear that 💕
Lydia seems like an awesome friend so props to her.... Also good luck with your upcoming marathon! 🥇 👍
Thanks, I’m sure I’ll smash it 😂😂
@@susanmargaretwills6432 I’ll let her know you said so, I’m sure that’ll be really nice for her to hear :) Thanks!
Was your friend is so wonderful! I hope you’re feeling a bit better now!
Aw, thanks for sharing! I've wondered too what to film for flare days, but it's all part of the journey. It was so nice seeing your friend and hearing you joking. I'm gonna run a bed marathon, lol. That is totally my speed. :)
Thanks, that’s a good point! I loved your wheelchair racing video btw, that was so fun!
That is very nice of your friend to let you come over and stay at her place while they do painting in your room.
Yes! Super nice of her!
@@GeorginasJourney That is for sure :)
Great video, thanks for showing us what your flares can look like!!
Yep that's a flare day. I'm coming out of one that started last week so hopefully I can do some brewing later in the week and if not it will have to wait until the next week. Great to see you have good friends in your videos who support you. Excellent. With CFS we don't swim upstream we go with the flow. Cheers and take care 😎👍
Thank you for sharing a flare day with us, I know it is not easy filming when you are poorly.
I know it is not related to this video (well it is kind of), but I wanted to ask if you can have a pacemaker for your SVT or are you too sick with your EDS to have it done?
My SVT was in one place so I had it fixed but I know you said yours is more complicated.
I know it’s not a fix as you have PoTS too and EDS and CVS. My PoTS is still there and I have mild CVS symptoms but not like I did when I was a child.
I also have moderate ME. I’m looking for work that will make accommodations but it is not simple especially since covid made it difficult for everyone to work.
Lots of love hun 💜you really inspire me to carry on. You have so much to deal with and you do it with such strength.
Very good video and super awesome friend you have.
She was great 😊
Like this video if you liked it! 👍🏽😊
Hope you're feeling a bit better now! So glad you have such a wonderful friend. I'm not feeling super great today ... and a family member decided to yell at me instead of being kind 😢
So sorry, I’ve been in that situation myself countless times
3:11 Then the camera must be turned right about 90 degrees. ;-)
This video is a good way to show that "being there for someone" can mean all kinds of things.
Hi Georgina!
I hope things aren't doing too bad! 😢
May I ask you on what medications you are/were and if you have some kind of therapy for your disease?
If so, are they working a bit?
Are there actually some strategies to overcome some of these symphtoms?
I'm currently studying to became a nurse, second year.
Thank you if you want and can answer, if you are not too sick and tired!
Sending you the best wishes and greetings from Italy❤😊
I answer all of this in some other videos, I will link a couple for you!
Living With EDS & POTS | My Medication, Braces & Splints!
czcams.com/video/mgdkjQuAwq4/video.html
POTS Tilt Table Test at Home Before & After Medication! | Active stand test
czcams.com/video/_Mul5eag23U/video.html
I ll watch then, thank you very much indeed!!!
Please upload new video fast I love your videos and one of your fan from India you are really a hero get well soon sister
I can’t at the moment. I told you I was I’ll when you asked before, please respect that.
@@GeorginasJourney ok
I stay at the flare up but not as bad as hers is if I take my medication right, I may have 2-6 good hrs but then I’m so exhausted it takes 3-4 days to get back to where I can go to the bathroom but I have to always be in a Transport chair or wheelchair, I was using a standup Walker but within 10 minutes I would start Blacking out or be so weak My Husband had to help me get back in bed or sit down real fast, having POTS has totally changed my life, I’m in bed most all days because of being so exhausted
So sorry it’s like this for you, it’s the same for a lot of us here, I know I film in my better moments but I’m in bed nearly 24/7 too 💕
Do you ever find that when your POTS acts up it’s difficult to pass stool? My rate goes up to 180-190 when the episode is really bad even on beta blockers
It’s difficult to explain to people
Sorry you’re going through that, that can happen, yes- you may need to increase your dose or add another medication to help it, so could be worth booking a doctors visit to discuss it with them
@@GeorginasJourney thank you so much for replying I’m in the middle of a bad flare and your video really helped.
🙏💜 keep doing what you’re doing 🫶🏼💪🏼 stay blessed
💗💜
I totally understand what your saying, POTS is terrible I’ve had it for 2+ yrs and keeps getting worse & my Dr increased the dosage of the Beta Blocker but I’m so sensitive to medication that he had to put me back on the lowest dose, I hope You I prove or it just goes away, 😔🙏🏻
HI friend! I also have POTS and ME/CFS and share my journey on YT! I would love to connect and maybe do a collab together! I also have a CZcams channel with 6k subs. I'd love to be friends and collab!
Sorry I didn’t see this before, but look how far you’ve come! 20K! Congrats!
I hope you are doing better a year later!
Thank you, I still have flare ups like these, but unfortunately life in general has got so bad for me that my health is the least of my worries these days 😅
@@GeorginasJourney why, what's going on that's worse than your health problems?
@@redhairedviking2657 this video explains a bit of it, I became homeless after finishing university & things got worse from there:
czcams.com/video/RcRAhFFthz4/video.html
@@GeorginasJourney I actually watched. I would donate, but I've had to move in with my parents after getting laid off triggered everything after I got mono back in January. You can't call the cops for them being too loud?
@@redhairedviking2657 Oh I wasn’t wanting you to donate, I was just answering your question! No, because they’re not the issue, the issue is the building itself, they’re allowed to make noise in their own home, the issue is the way the building amplifies it into my property & how it rattles the blinds completely off the walls, & door & light fixtures. & it’s not just the noise related stuff, it’s the fact I have no support, I can’t manage my care needs on my own, I can rarely leave as my flat’s not wheelchair accessible & I barely ever see anyone
Sorry if this is obvious but when you're in bed all day are u sleeping? Or can do things like watch TV play on phone ?
You're friend seem nice and understanding im glad you have her.
It varies, with POTS flare ups, sometimes I can go on my phone, other times I can’t do anything at all & I occasionally end up in Resus in hospital. In a CVS flare up, I can’t speak, move, use my phone or watch a movie.
@@GeorginasJourney thanks for explaining.
Isn’t it hard to live alone with such a condition
Yes
Are there not any meds that will help keep.your heart rate lower?
I’m on beta blockers for my usual tachycardia, but when it gets really bad, I can go into hospital for extra help with it
I’d like a room tour! 🥰 you have a good friend 💜 I have a question I hope it’s not too personal but do you have a foley cath? I just had to get one due to neurogenic bladder :(
Hi! I use intermittent self catheters instead of having a Foley catheter
Hi Beautiful how long did it take for a diagnosed
Hi! My doctors couldn’t figure it out for over 3 years & they even missed several red flags, like the fact my resting (lying down) heart rate was 125-130 on all of my ECGs. I then went back to my doctors after being sick for 3 years & asked if I could be tested for pots. In that appointment, the doctor did some simple tests using a pulse oximeter & I was referred to cardiology (I got given an urgent referral due to some other stuff that was missed on my past ECGs). So for me, it took about 3.5 years, but I was only diagnosed so quickly because I noticed the signs myself & asked to be tested
Georgina, have you tried the Gupta Program?
no, what is it?
@@GeorginasJourney It is a brain retraining program for chronic conditions like ME, POTS etc.
@@Kaazzaam88 mine is caused by a genetic condition called EDS, so it can’t help me as my problem is in my DNA-the cause of illness is important for determining whether programs like that can be helpful or not
Why you didn't upload videos regularly
I’ve uploaded 1 video a week for the past 2 months. I can’t do any more than that because I’m chronically ill & a full time university student. And I’m not uploading at the moment because I’m too sick.
@@GeorginasJourney ok friend but love you videos love from India get well soon
@@GeorginasJourney get well soon
@@maxgaming6972 thank you
@@GeorginasJourney welcome 😁
Hey dude. I enjoyed your content so much. You most definitely need to put out more vids. The skit at 1:30 is my fav. You have to film with Bad Friends! Their stuff are like the Vlog Squad mixed with Casey Neistat.
Go check their page out and give them a subscribe! 👉 #SurpriseBadFriends