I saw this video in my feed and was so excited!! It's so hard to find someone who is genuinely relatable when you are ill. It really is like groundhog day. ME is mentally exhausting. I could never imagine how difficult it is to try rest and recover whilst still trying to do the odd thing so you don't lose the damn plot. Then have to do it constantly every single day. Much love ❤️ I really hope you can find the stable routine that works for you soon xxx
I will keep making them! I have just finished editing last months one! Hopefully I will be able to upload it soon! Thank you for your support it means a lot x x
I related to this video sooooo much Alice ❤️ I swear ME is such an unbelievably difficult illness. People don’t understand how hard it is to just lie in bed day in day out for years. Then you get small energy windows and of course you want to do ALL THE THINGS but then you just crash and are back to days, weeks, in bed. And on and on and on. Please keep making videos! Been in bed again all day again today and it is comforting that I am not alone in this. I think you are very strong and brave 💪 And I love your humour! Oh and big love to Ollie the cat, he is precious ❤️ xx
Ugh exactly!! I wish people Could like experience it for a day, and then realise just how hard it is! I’m sending so much love it really is so so shit isn’t it!!! X
Please continue making these vids 🥺💜 we appreciate it more than you know Alice. Also, look into POTS, it’s a very common diagnosis alongside ME. I’m currently being assessed for it.
It’s not you fault you’re not healing faster! Just like you, I’ve wanted to give up, but we haven’t and just getting through this illness makes us strong. The fact that people who are in good health have struggled so much with lockdown is a testament to that. Keep going.
That’s a really good point! Yes we are very strong! I know I can’t try any harder so I guess I’ll just see what happens! Sending lots of love and strength x
I am glad you find Alex Howard helpful. It’s interesting as when I read his book years ago now, I couldn’t relate to his illness experience and recovery with my experience of ME which I have had for 22 years. I really felt he had a post viral syndrome that naturally resolved as post viral syndromes often do within a couple or years. ME doc, Melvin Ramsay, who followed the ME outbreaks having worked at Royal Free when there was a ME outbreak there in 1955 said post viral syndromes are usually self limiting even if can take a while and clearly separated them from ME. Just something to possibly consider.
Thank you so much for your message I will definitely consider that! Yes you never know he may have had that he may have had the other, who knows! Who knows what any of us have! If only there were a test that would definitely make things a little clearer wouldn’t it! Hoping for some new research sometime soon to help us! Thank you so much for your message and I hope you are doing wellx
@@ItsAliceElla, sorry I only just saw this. Thank you for replying. I agree a diagnostic test would help so much and bring some much needed clarity. I think there is a bit more ME biomedical research than previous and growing reluctant recognition of ME by med authorities. So I hope things are slowly moving forward. All the best x
I'm so pleased you decided to carry on making these. At the very least they'll be a diary of your life throughout the year but hopefully you might find them somewhat cathartic too. From an onlooker's view, this seemed to be a better month for you. You certainly gave the impression of being more upbeat than in some previous months. Let's hope the trend can continue into next month too. :)
Thank you so much Graham! It’s really weird when I do you ever look back over them I really can see my journey in a way that I never word without making these videos! There are so so many good times I would never remember as you tend to focus in on the bad don’t you! So it’s a really nice way to remember all the good times as well! Thank you for your support always!x
I don’t know why, but I always get ridden with guilt when I know I need to take a chunk of time to rest, so it’s almost like I have to have somebody else tell me that it’s OK in order to be able to give myself permission to lay around for 48 hours or a week without getting up to attempt something around the house so that I feel like a useful partner. So this is me giving you permission to be a lump for a week! If you haven’t by now, REST UP!
Haha definitely needed that!! Yea I am definitely the ‘achiever type’ and a perfectionist which doesn’t go down well with ME 😂 struggle so much to just rest!! But I will I will promise haha x x lots of love kezzaaaaa x x x
Ha ha! I tried that a while ago and didn’t really like it! But I am watching the new series of good girls now! Which I love! Thank you for your support! X
I sometimes wonder with people getting better do they improve because they get through depression elevates tiredness or is diagnosis slightly different who knows what it is even if all the same can’t blame ourselves, love theses as always 😊
It’s confusing isn’t it? I’ve tried everything that has ‘cured’ others - GET, CBT, pacing, supplements, different diets, Lightning Process, GUPTA, Dr Myhill’s protocol, acupuncture, 5 types of hypnotherapy, heavy metal detox, magnesium injections, B12 injections, kinesiology, massage, crystal healing, reiki, spiritual healing, reflexology, Perrin Technique, CBD oil, various prescription meds, counselling, etc etc etc. Nothing works. A few things help a little but I’m still moderate to severe and have been ill 18 years now.
Lucinda faaaack!! Very sorry and sad to hear this! I feel quite the same! Although I do feel like the lightning process helped me a few years ago but since then I’ve had so many severe relapses that who knows! I do feel like there is definitely a mindbody connection but I don’t know to what extent that could help someone! Sending you love and strength on this bloody awful journey! X x x
It’s definitely something worth looking at! I know that when I work really hard on my brain it can improve how I feel yet I definitely wouldn’t say it makes me better! But I am still working on it! Who knows!x x
Dear Alice maybe u could try cut out walks for a few weeks and see how u feel. U won’t know till u try. It seems this is going over your limit. Only when u stay inside the limit can u then slowly expand it. Heart Symptoms sound like pots. I have that too. Common in cfs. I can’t sit or stand tho :/ all the best!
Yes that is definitely true! I think when I do Cut back a bit I do feel a little bit less terrible! So definitely worth a try! Thank you for your support and I really hope you are doing well! And yes I have got a referral to see a cardiologist soon! Hoping they might be able to help even if just a little bit!x x
Alice Ella Alice pls watch this guy: ua-cam.com/video/-Nr3YpCoDiM/v-deo.html Channel is great. Cfs is a mind body condition (like all are related to mind and body too but cfs much more so!). Best bet is to work on that. I’m severe and started to be able to sit up n do more by doing it let few weeks!!!! Text if u want help
By the way I want to share this video but someone hacked my account so I set up new passwords for everything, wrote them down on a piece of paper and then lost the piece of paper. Yesterday I decided to log out of my social media accounts to have a break and now I’m desperately seeking the passwords. ME life!
Oh god!! I can relate to this toooo much 😂😂 sorry to hear about the hacking though that’s rubbish!! Bad karma to them! Maybe just change all your passwords to ILOVEALICE123 and you’ll never forget 😉 hahaha x x
I saw this video in my feed and was so excited!! It's so hard to find someone who is genuinely relatable when you are ill. It really is like groundhog day. ME is mentally exhausting. I could never imagine how difficult it is to try rest and recover whilst still trying to do the odd thing so you don't lose the damn plot. Then have to do it constantly every single day. Much love ❤️ I really hope you can find the stable routine that works for you soon xxx
Thank you that means so much! It really is like Groundhog Day isn’t it!? I really hope that you’re doing well sending lots of love and support xx
Keep the videos coming you’re an inspiration to many. Much love Alice
Thank you so much that means a lot! X x x
Thanks for making another video to show what living with a chronic illness is like. Please keep making them. Sending love to you and your family.
I will keep making them! I have just finished editing last months one! Hopefully I will be able to upload it soon! Thank you for your support it means a lot x x
Getting to sneeze openly like that at home is one of life’s little treats. Bless you 😆
Ha ha isn’t it just the best! Hope you are doing well x
I related to this video sooooo much Alice ❤️ I swear ME is such an unbelievably difficult illness. People don’t understand how hard it is to just lie in bed day in day out for years. Then you get small energy windows and of course you want to do ALL THE THINGS but then you just crash and are back to days, weeks, in bed. And on and on and on.
Please keep making videos! Been in bed again all day again today and it is comforting that I am not alone in this. I think you are very strong and brave 💪 And I love your humour! Oh and big love to Ollie the cat, he is precious ❤️ xx
Ugh exactly!! I wish people Could like experience it for a day, and then realise just how hard it is! I’m sending so much love it really is so so shit isn’t it!!! X
Please continue making these vids 🥺💜 we appreciate it more than you know Alice. Also, look into POTS, it’s a very common diagnosis alongside ME. I’m currently being assessed for it.
Keep fighting and being strong love 💪🏽
Thank you so much that means so much, yes I am getting that looked into I have a cardiologist appointment soon! Thank you for your support!x x
It’s not you fault you’re not healing faster! Just like you, I’ve wanted to give up, but we haven’t and just getting through this illness makes us strong. The fact that people who are in good health have struggled so much with lockdown is a testament to that. Keep going.
That’s a really good point! Yes we are very strong! I know I can’t try any harder so I guess I’ll just see what happens! Sending lots of love and strength x
I am glad you find Alex Howard helpful. It’s interesting as when I read his book years ago now, I couldn’t relate to his illness experience and recovery with my experience of ME which I have had for 22 years. I really felt he had a post viral syndrome that naturally resolved as post viral syndromes often do within a couple or years. ME doc, Melvin Ramsay, who followed the ME outbreaks having worked at Royal Free when there was a ME outbreak there in 1955 said post viral syndromes are usually self limiting even if can take a while and clearly separated them from ME. Just something to possibly consider.
Thank you so much for your message I will definitely consider that! Yes you never know he may have had that he may have had the other, who knows! Who knows what any of us have! If only there were a test that would definitely make things a little clearer wouldn’t it! Hoping for some new research sometime soon to help us! Thank you so much for your message and I hope you are doing wellx
@@ItsAliceElla, sorry I only just saw this. Thank you for replying. I agree a diagnostic test would help so much and bring some much needed clarity. I think there is a bit more ME biomedical research than previous and growing reluctant recognition of ME by med authorities. So I hope things are slowly moving forward. All the best x
I'm so pleased you decided to carry on making these. At the very least they'll be a diary of your life throughout the year but hopefully you might find them somewhat cathartic too.
From an onlooker's view, this seemed to be a better month for you. You certainly gave the impression of being more upbeat than in some previous months. Let's hope the trend can continue into next month too. :)
Thank you so much Graham! It’s really weird when I do you ever look back over them I really can see my journey in a way that I never word without making these videos! There are so so many good times I would never remember as you tend to focus in on the bad don’t you! So it’s a really nice way to remember all the good times as well! Thank you for your support always!x
Thinking of you. Hope you're ok. Sending love from Canada!
Wow Canada! That’s amazing x x thank you so much xx
Alice Ella 💕
2:31 is an absolute mood.
Hahahah love you 😂😂🙌🏻
I love these vids they make me feel less alone. Your doing great 💕
Thank you that honestly means so much, I will keep making them don’t worry! X x
Good luck, Alice!
Thank you so much x
I came down with Grey Cushion Disease in 2014 and it's really tough! Hang in there...
I hope that you're doing well SOFAR..... ;)
THANK YOU
Thank you for your support x x
I don’t know why, but I always get ridden with guilt when I know I need to take a chunk of time to rest, so it’s almost like I have to have somebody else tell me that it’s OK in order to be able to give myself permission to lay around for 48 hours or a week without getting up to attempt something around the house so that I feel like a useful partner.
So this is me giving you permission to be a lump for a week! If you haven’t by now, REST UP!
Haha definitely needed that!! Yea I am definitely the ‘achiever type’ and a perfectionist which doesn’t go down well with ME 😂 struggle so much to just rest!! But I will I will promise haha x x lots of love kezzaaaaa x x x
4:18 Bless you )
Hehe thank you so much x
I recommend Lenox Hill on Netflix if you've not seen it. Superb mini doc series.
Ooh I haven’t seen it! Thanks so much for the recommendation! X
Move in with that man of yours. 😊
4:18 This Achoo! without the hand 😆👌
Netflix recommendation ... Sense8 🌀your welcome 😃
Ha ha! I tried that a while ago and didn’t really like it! But I am watching the new series of good girls now! Which I love! Thank you for your support! X
I sometimes wonder with people getting better do they improve because they get through depression elevates tiredness or is diagnosis slightly different who knows what it is even if all the same can’t blame ourselves, love theses as always 😊
It’s confusing isn’t it? I’ve tried everything that has ‘cured’ others - GET, CBT, pacing, supplements, different diets, Lightning Process, GUPTA, Dr Myhill’s protocol, acupuncture, 5 types of hypnotherapy, heavy metal detox, magnesium injections, B12 injections, kinesiology, massage, crystal healing, reiki, spiritual healing, reflexology, Perrin Technique, CBD oil, various prescription meds, counselling, etc etc etc.
Nothing works. A few things help a little but I’m still moderate to severe and have been ill 18 years now.
Lucinda faaaack!! Very sorry and sad to hear this! I feel quite the same! Although I do feel like the lightning process helped me a few years ago but since then I’ve had so many severe relapses that who knows! I do feel like there is definitely a mindbody connection but I don’t know to what extent that could help someone! Sending you love and strength on this bloody awful journey! X x x
It’s definitely something worth looking at! I know that when I work really hard on my brain it can improve how I feel yet I definitely wouldn’t say it makes me better! But I am still working on it! Who knows!x x
Dear Alice maybe u could try cut out walks for a few weeks and see how u feel. U won’t know till u try. It seems this is going over your limit. Only when u stay inside the limit can u then slowly expand it. Heart Symptoms sound like pots. I have that too. Common in cfs. I can’t sit or stand tho :/ all the best!
Yes that is definitely true! I think when I do Cut back a bit I do feel a little bit less terrible! So definitely worth a try! Thank you for your support and I really hope you are doing well! And yes I have got a referral to see a cardiologist soon! Hoping they might be able to help even if just a little bit!x x
Alice Ella Alice pls watch this guy: ua-cam.com/video/-Nr3YpCoDiM/v-deo.html
Channel is great. Cfs is a mind body condition (like all are related to mind and body too but cfs much more so!). Best bet is to work on that. I’m severe and started to be able to sit up n do more by doing it let few weeks!!!! Text if u want help
Thanks Jen x x x
By the way I want to share this video but someone hacked my account so I set up new passwords for everything, wrote them down on a piece of paper and then lost the piece of paper. Yesterday I decided to log out of my social media accounts to have a break and now I’m desperately seeking the passwords. ME life!
Oh god!! I can relate to this toooo much 😂😂 sorry to hear about the hacking though that’s rubbish!! Bad karma to them! Maybe just change all your passwords to ILOVEALICE123 and you’ll never forget 😉 hahaha x x
You might wanna check this out: Raelen Agle
Thank you I will have a google! X