- Видео 22
- Просмотров 26 090
gingerels
Великобритания
Добавлен 17 дек 2013
welcome to my channel ♡
my name is Elaina & I make videos all about life with Cystic Fibrosis (CF) I hope that through my videos I can help to raise awareness for chronic illness & what living with it is really like - hopefully you can learn something along the way too!
aside from this I also enjoy making lifestyle, vlog & 'anything else I fancy' videos so stick
around for all of that :)
social media :
instagram - @gingerels
tiktok - @gingerels_
depop - @gingerels
my name is Elaina & I make videos all about life with Cystic Fibrosis (CF) I hope that through my videos I can help to raise awareness for chronic illness & what living with it is really like - hopefully you can learn something along the way too!
aside from this I also enjoy making lifestyle, vlog & 'anything else I fancy' videos so stick
around for all of that :)
social media :
instagram - @gingerels
tiktok - @gingerels_
depop - @gingerels
what being on steroids is REALLY like 🌝
TW !! discussions of weight gain, body image issues & insecurities - apologies I didn't think to put a warning at the beginning of the video, but the topic of steroids is very intertwined with body image problems for me, so that is a strong theme throughout the whole video! In case you are feeling delicate today & perhaps don't want to hear about all of that, maybe give this one a miss :)
Also for anyone wondering the steroid I am on is prednisolone, but I have also been on hydrocortisone in the past too!
& finally just to clarify, this video is not meant to dissaude anyone from steroids (as they are very effective, & I owe a lot of my lung stability to them!!) but more to shed light on t...
Also for anyone wondering the steroid I am on is prednisolone, but I have also been on hydrocortisone in the past too!
& finally just to clarify, this video is not meant to dissaude anyone from steroids (as they are very effective, & I owe a lot of my lung stability to them!!) but more to shed light on t...
Просмотров: 448
Видео
why I dropped out of uni (& why you maybe should too) | University of Sussex Dropout
Просмотров 7 тыс.2 года назад
it's been a few months since I dropped out of second year - & still couldn't be happier about it! I just know that I struggled for a while accepting the decision that I didn't want to be at uni anymore, so if anyone else feels the same please don't think you are alone !! At the end of the day you need to put your mental health first, & if that means taking some time away from your course (or dr...
Tinting my lashes AT HOME?! 🦋 | Testing the Eylure Lash Dye Kit
Просмотров 5 тыс.3 года назад
Today I tried the Eylure Lash Dye kit! I was so skeptical as the last time I tried to do anything to my lashes, it didn't turn out so well... (big rip to the diablo lash lift kit) but I was pleasantly suprised with the results of this, & costed under £10 so pretty affordable too ⭐️ Eylure Lash dye kit - www.superdrug.com/Make-Up/Eye-Makeup/False-Eyelashes/Strip-Eyelashes/Eylure-Lash-Tint Black ...
starting home IV antibiotics, PICC Line insertion AND removal !! 💉
Просмотров 2,1 тыс.3 года назад
minor blood warning !! sorry my lovlies I should have made this far more clear in the video - I'm so used to this kind of thing I didn't even clock all the parts some people may not be able to watch if you are sqeamish T i m e s t a m p s - none of this is super gory or bloody by any means, but just in case here are the parts of the video you may want to skip 🌼 00.41 - 00.45 - sped up clip of P...
Do all Cystic Fibrosis Patients think the same? | CF Awareness Month 💛
Просмотров 4133 года назад
As it is almost the end of CF Awareness Month it was only fitting that I did an extra special video 🌼 I always hope that my videos can give some insight to Cystic Fibrosis, but as with any other illness, it's so important to recognise that everyone's experience will be different !! A great way to demonstrate this is to hear from other people - in this video I was joined by some lovely other CFe...
I answer your questions about Cystic Fibrosis & Kaftrio!! | Q&A
Просмотров 3833 года назад
Happy CF Awareness Month! It's been nearly a year since I did my last Q&A, so I thought it was about time for another - thanks to everyone over on my insta who sent a question in :) My stuff ✨ Instagram - gingerels Depop - www.depop.com/gingerels/ Previous video - ruclips.net/video/uvMY8p82o1c/видео.html My last Q&A video - ruclips.net/video/aOQa85rnUik/видео.html K a f t r i o v...
I stopped Kaftrio.
Просмотров 1,6 тыс.3 года назад
so this video really has been 5 months in the making (oops) but I finally just wanted to bite the proverbial bullet & talk about my experience stopping the Kaftrio. I needed a bit of processing time as the whole experience was pretty overwhelming to say the least. But I feel comfortable to talk about it now - especially as I know it may help some other people. Just from chatting to other people...
10 days in a national lockdown
Просмотров 1423 года назад
not me forgetting I had filmed & edited a vlog from 2 months ago oop My stuff ✨ Instagram - gingerels Depop - www.depop.com/gingerels/ Previous video - ruclips.net/video/jlbqJ8W3Lsc/видео.html How can I help? Donate to the CF Trust - www.cysticfibrosis.org.uk/donate Educate yourself - www.cysticfibrosis.org.uk/wha... I film using a Canon G7x mark ii my Iphone 8 plus I do not own ...
a chatty GRWM | youtube thoughts, insecurities & trying to practice self love
Просмотров 1643 года назад
oh dear oh dear I have been so MIA on this channel oops I've just been going through a patch of the old self doubt & feeling insecure about, well, everything phah (we all get those times...) Slowly but surely I will be posting a lil bit more - I actually love how this video turned out as it was so chill & I was just being myself! hope you enjoyed it too :) x My stuff ✨ Instagram - instagram.com...
my goals for 2021
Просмотров 3173 года назад
happy belated new year everybody! This video was supposed to go up weeks ago oops, but better late than never... My stuff ✨ Instagram - gingerels Depop - www.depop.com/gingerels/ Previous video - How can I help? Donate to the CF Trust - www.cysticfibrosis.org.uk/donate Educate yourself - www.cysticfibrosis.org.uk/wha... I film using a Canon G7X Mark II I do not own any music used...
my relationship with body image & Cystic Fibrosis
Просмотров 5213 года назад
hello lovelies as mentioned today's video is a bit longer than usual as I had a lot to talk about! I hope everything made sense - as I'm sure you can tell this is quite personal for me to go through, but I think it turned out ok in the end 😌 TW (trigger warning) - Because this video is discussing sensitive topics such as body image, perception of appearance, weight loss & gain, please take a mo...
Disability History Month 2020 | Spreading Awareness for our Disabilities
Просмотров 3543 года назад
The 18th of November to 18th of December 2020 marks Disability History Month - the history of both visible & invisible disabilities are crucial in helping to spread more awareness & education of those who are disabled ✨ On this last day of Disability History Month (just in the nick of time oops) I have made a video with 5 lovely ladies who are all spreading awareness for their own disabilities!...
Kaftrio update at 2 months | why the 'miracle drug' narrative can be problematic
Просмотров 6853 года назад
as always these are just my personal opinions & experiences of being on the Kaftrio (& of CF in general!) IMPORTANT TO NOTE - I am by no means saying that Kaftrio does not have the potential to help a lot of people - & if you are one of the people that it is helping then that is incredible!! But as I explain in the video, I think a lot of the time the way drugs like these are marketted only cau...
a very chill day in the life
Просмотров 3993 года назад
hope you guys enjoyed today's video! I'm going to be doing a lot more vlog/general life videos in future too - as I really enjoy it 😌 Thanks to everyone over on my insta who voted for this week's video x A few things I forgot to mention: Creon (pancreatic enzymes) - I did not make this clear enough, having CF we take creon EVERY time we eat!! It's such a habit I forgot to film every time I took...
giving myself a lash lift? | Diablo Cosmetics lash lift kit
Просмотров 3924 года назад
I've linked the lash kit below, maybe don't buy it... or do buy it? I really don't know what to tell you 😂 I've also a linked a lovely lady's video who I had on in the background helping me to make sure I didn't glue my eyes together (that part was a success at least) I think like most beauty, face/hair care products it may depend very much from person to person. I've heard people saying that d...
My first week on Kaftrio!! | Cystic Fibrosis Patient
Просмотров 1,7 тыс.4 года назад
My first week on Kaftrio!! | Cystic Fibrosis Patient
ASMR Organising my pills | whispers, tapping, repetitive movements
Просмотров 1424 года назад
ASMR Organising my pills | whispers, tapping, repetitive movements
my first appointment during a pandemic | hospital vlog
Просмотров 2144 года назад
my first appointment during a pandemic | hospital vlog
Living with Cystic Fibrosis (CF) | Welcome to my channel ♡
Просмотров 9894 года назад
Living with Cystic Fibrosis (CF) | Welcome to my channel ♡
Girl, I'm 2 years late, but I am a strawberry-blonde and I have lashes and brows that's literally white-blonde and you can't see them. I really want to dye my lashes, but I'm in a school with really strict procedures (in one of those schools that have official school uniforms, so iykyk. We aren't even allowed to wear makeup) and I searched everywhere, on every platform for a before-and-after of a ginger girlie, like myself, who dyed their lashes to see if the change is drastic and your video wasn't just sufficient in answering my question, but I really enjoyed watching you - great video! And you do look like a goddess~ ❤ Honestly, we need more representation of redheads in the beauty community; ily!
Hey there! I stumbled upon this video trying to seek some comfort on the internet and ive been finding so many videos of people talking about their experience dropping out of uni. I told .y mom today that i dont want to keep going anymore, it was a very emotional call and i still cant believe i did this but it was my breaking point, i couldnt handle lyinng to myself more anymore, i had to let her know. Its just sad since she fought so much for me so i can be able to go to uni and shes definitely disappointed but i honestly had to consider my own health at thus point and the way i lived and where i lived. I am so unhappy and exhausted mentally. This is the end of my third year and i think i had enough of thinking that i like something that i clearly i actually dont. I just dont want to do it, i dont like it, i dont enjoy it, i have 0 passion for it. In case you wanna know its a mathematics university. I thought i had the strength to keep going but i realized there wasnt even a reason to keep going. I absolutely hated my time, my life, my lectures, the environment and i finally can make the decision to quit and give myself time to see what i actually like and want. Im freshly 21 now, im probably going to work for a year and maybe next year i might have a different type of mindset about it
I have CF and what I discovered is chlorite quartz crystal helps me breath greatly. Give it a shot. Hold one on your right hand for at least 15 minutes and see how your breathing responds. ❤ Many blessings and wishing you well and great health and longevity 🙏🌞🌚
How can I get the drug
Kako to da ste svi toliko debeli?
Hi, I am considering dropping out of the ‘University of Sussex’. Will I get a refund for the first tuition fee instalment that I paid back in September?
Like you could get so sick If you study the wrong subjects
Thank you so much for this video, I guess the reason I’m here is because I got so mentally unwell at uni in the first year that I was suspended and now I’m so conflicted on what to do! 💗
you didn't remember to disinfect the skin at the end when you took it off? when you took it off, I felt somehow uncomfortable when I watched the video, even though I am a nurse.
I just made the decision to not go back next year to uni. I've never felt more alone and anxious in my life, but i know i'm making the right decision. I applie to this degree bc people kept telling me that is such a good area to study (btw I was studying law, more specifically to be solicitor) and not bc I wanted it. I've lost 3 years of my life in something that made me absolutely miserable bc I didn't know what to do but I realized that I have to live for myself and stop trying to impressed others. So now I'm going to find a job, save some money and, hopefully, go and get my degree in something i've always wanted to do!
🥰
Damn. I do deliveries some evenings and deliver to your uni. I had my doubts about uni when I was a student but mainly due to depression and ultimately it paid off because although I don't directly use my degree, it got me a job doing what I like (day job) because they value the degree. That alone is a reason to stick it!
I think you did really well as a first attempt, everything takes practice and it’s definitely cheaper than going to the salon.
Hello my lovely, as a fellow redhead I need your advice please. I’ve tried tinting my lashes with the same tint and it made my eye lashes sting like mad. I want to do the same with my brows help
I was born with CF I'm 45 struggle keep weight on!
Also have Cf, pancreatic sufficient, and trikafta made me feel like I was operating my body in 3rd person. Couldn’t control my body, insomnia, decline in mental health, severe migraines and blurry vision. it also hasn’t helped much of my CF symptoms at all! I’ve been on it 7 months, and my doctor has now suggested I stop the medicine soon. Still not giving up hope because of all the praise my doctor has said about it, but so far this medication has been nothing short of horrible for me. It’s strange that people say a small percent of people can’t handle it, because I’ve read thousands of responses of people who discontinue it as well. The media is sus! Hope you’re doing well
Hello, I have Cistic fibrosis, and I was wondering if you have access to Tricafta, a reletivaly new drug, depending on where you live. For me, it's side effect free and it works really well. It's not the same for everybody, but I think it's worth trying. Keep going!!! 💛
Hello, I have CF and I heard you talk about Kaftrio, which have some side effects, but I was wondering if you had the option of Tricafta, which is a drug I take and is for me, with no side effects. Keep going! 💛
Did it hurt getting mien out tomorrow and I’m nervous
im crying 'why do I have a pen'
🥲🥲🥲
I’m terrified of weight gain with kaftrio I start it next month. I feel like not even taking it.
thank you for sharing as god it’s so reassuring to know it’s not just me?! but also, I’m so sorry to hear that it is a concern of yours too 😩 - I guess the same as every other medication you just have to try & weigh up the pros & cons of it for you personally, & what is going to be best for you & your overall health 💛
I have question for you over cystic fibrosis and lung transplant. 1 Why do new lungs go into rejection for? 2 what happen if people keep on leave Pseudomonas to infected new lungs what would that happen too them? 3 i have question for you over lung transplant for cystic fibrosis. Can bacterial from old cystic fibrosis lungs infected new donor lungs after lung transplant for being sill being in CF sinus? Cf patient who had lung can that happen . 4 i have question for you over lung transplant For CF .why do people get lung transplant for cystic fibrosis when it not cure CF?
sure! 1 - I don't have much knowledge about it, but your immune system can just reject any new organ that has been transplanted which can cause problems! 2 - I'm not sure what you mean?! But because of the mucus a CF patient's lungs produces, even with a lung transplant you are still at risk from infection (such as pseudomonas) as the overproduction of mucus causes this 3 - I'm not too sure! I do know that the damage caused by the infections in someones lungs will not be there anymore after a transplant has happened - as the donor lungs will not have this scarring & damage. But tbh I'm not sure whether infections can pass from one lung to the other? 4 - If your lungs have so much damage from infection & mucus that you are struggling to breathe, & your lung capacity is so low, then your only option to try & survive may be to have a transplant. Although it does not cure CF, it can help to give people another chance :)
can people with cystic fibrosis not always have problems with their liver and kidneys and pancreas and another parts at all I have always wonder that
great question! It really just depends on the person & the type of CF you have? for example, I have never had problems with my liver or kidneys (as of yet) but my pancreas doesn’t work properly without treatment. In contrast some people with CF won’t have any problems with their pancreas. The same goes for the liver, kidneys, bowel, just to name a few! You could have any combination of problems with different organs, or only a few - it really depends on the individual person & genetic strain of CF you have. Hope that makes sense! x
@@gingerels @gingerels i have autism and heart defects call tetralogy of fallot i am interested in cystic fibrosis and lungs disease
Something about you reminds me of a Guinea pig❤️😭 Btw you literally seem like the sweetest person ever
PHAHAH omg that cracked me up so much thank you 😭🤣 x
thank you so much for making this video.... it's pretty much what I'm feeling right now 3 weeks in now
I'm so sorry to hear that you are struggling with side effects :( but thank you so much for sharing this. it is always so reassuring to hear other people have experienced this too!! I hope it starts to become easier for you asap, take care x
Oh and i will sub
Hi! Im new can u post more videos pls?
I wish I’d heard a more balanced talk about uni too, I don’t think I’m the type of person cut out for the big lectures, meeting SO many ppl every week, and the type of work (assignments) we do. I have one year left, so bc of the time and energy I’ve invested, I’m likely to just stick it out. Thank you for this video, it really confirmed a lot of the ways I’m feeling about it:) I couldn’t agree more about uni being advised to the more academic people, and I think that’s unfortunate :(
aw thank you so much for this comment - I completelyyy agree!! I felt the exact same - like uni 'lifestyle' & the style of learning, socialising just did not suit me at all! I'm so sorry to hear that you have felt similarly whilst at uni still :( (if its any consolation a lot of my friends are in the exact same boat, thinking oh god this probably wasn't for me but it's third year so I'll hang on in there) which sucks, but might be reassuring to hear I hope?! Good luck in your final year I'm sure you'll do fabby, make sure you give yourself lots of self-care & treats along the way, you got this ❤x
@@gingerels awe yes thank you! It is pretty reassuring honestly🥰 I’m taking a little break from school which has been really beneficial, and then yeah, I agree with the self care, I’m gonna do my best to focus on that💛
Hi I have cf as well I get weird looks at all the time
This year is my Year finally I'm free from HSV 1&2 illness for years now after applying the herbal medication I receive.ruclips.net/user/shortskeKKXt0iFKY?feature=share
thanks queen
Love this video!! Such a vivid insight into what it's like being on steroids and how it affects you, and so well-made. Kind of heart-breaking in moments - I so wished I could give you a hug when you got upset! I'm so sorry you have to be on steroids for so long and I hope it starts getting easier and that you're able to wean away from them soon! Sending so much love xxx
Aw thank you so much hat hat 😭 that all means a lot I really appreciate it - big hug is pending !! thank you for being so kind & understanding as always, it is slowly getting easier which is fabby 🥰 so much love x x
if you are on steroids, how are you finding it? are you like me struggling not to eat everything in sigh t?! 🤣 this video isn't meant to dissaude anyone from taking steroids (as they are extremely effective, I owe a lot of my lung stability to them !!) but to talk about the realities of being on such a strong medication. lots of love to anyone who might be finding it difficult being on them, hang in there x
Yay! so happy youve followed what is true to you! I regret not doing because I followed everyone else. Thank you so much for sharing this, I wish I waited to go to Uni. I had no idea what I wanted to do or lacked confidence to pursue what I wanted to do so after a term there I really wanted to drop out or change uni but my parents wouldnt allow me to. Not going to lie I did love clubbing but it was because i felt so empty. I think I drank too much and went out to cover how I was feeling. But mental health wasnt spoken about back then so I majorally felt like a failure when it all realness it just wasnt the time for me to be there. Its fantastic youre sharing youre experiences as I dont think everyone should feel they should stay somewhere just because others are, its best to do whats best for you and have more clarity, I wish Id dont the same. xx
aw thank you so much Lissy!! I feel the exact same, looking back I'm like ahhh why didn't I just recognise the fgact I was being such a sheep! But it's ok we were all silly teenagers once 🤣 That's the trouble with clubbing/drinking culture too, if you are struggling it can turn into a coping mechanism (which is not the healthiest yikes) it's so tricky trying to balance everything ! aw thank you, I hope it could help somebody! :) x x
Really brilliant video.. should be shared beyond your CF circle.. well thought out..honest and candid and what so many unsupported young people, or even mature students need to hear.. ACE my dear.. brilliant 🙂👏💕💗
aw thank you so much as always Linda !!! honestly I think all students could do with remembering uni can be bloody hard 🤣 so easy to think that you are the only one who is a complete mess phahah - lots of love x x 🥰
@@gingerels absolutely!! It's crucial for people to know that they genuinely aren't alone and life is a journey.. twists, turns, etc and no shame in having the courage to choose a different route. Life is to be lived, not suffered unnecessarily. So many roads leading to where you could be happy, content and to your personal point or idea of what success is. Too much shite put on kids and people these days.. 👀🤗💖
if you (like me) are feeling really overwhelmed with uni & are thinking of dropping out, please don't be ashamed of it! Your mental health deserves to be put first - doing what will make you happy is the most important thing 😌 * also didn't really mention this oops but for the time I was there, Sussex was fab! My decision had nothing to do with the actual uni :)
I am so glad that I came across ya video. 100% reflects how I'm feeling, been feeling. I have been miserable, MH has taken a knocking recently so.. onwards and upwards. I will be dropping out of uni. And carrying on with my life xx sending love + sunshine xx
@@smallflamesx I'm so sorry you've been struggling too, but thank you so much for sharing (every single person that has said they feel the same it's like ahhh thank goodness it's not just me!?) it's sounds like you are doing the right thing for you & that's whats most important, I hope you start feeling happier soon :) lots o love x x
I’ve been feeling very depressed and lonely at uni. Currently in first year in halls and thinking about commuting for the second year for my mental health. As I think being at home for second year will just be better for me. I was thinking about dropping out but I think the issue is being away from home. It will be hard to tell my parents that but they would want what’s best for me and my well being.
@@gingersnapp114 I'm so sorry to hear that you are struggling too :( I know it's so hard but you really have just got to do what is right for you !!! exactly as you say, I'm sure your parents would much rather you be healthy & happy over forcing yourself to stay somewhere that is having a negative impact upon your health. Just know so many people experience issues like this (unfortunately it seems just not many people speak on it!) well done for coming to terms with it all, you got this 💞
@@gingerels thank you so much for replying and for your kind words! I know they will understand I will just find it hard to tell them but I hope and sure it will work out xx
All them creons 😍😅I love being fully stocked up
it’s the simple things in life for me 🥲
It's a shame you had so many problems with Kaftrio, perhaps in time it might be worth giving a second go and see how you get on. I'm an older CFer (55) pancreatic sufficient and I am lucky to have next to no problems with it and the thought of possibly going back to the terrible coughing I had previous terrifies me!! Take care x
ahh sorry I’ve only just seen this!!! aw thank you so much I appreciate that :) yeah I really would like to try it again at some point as I know from a chest point of view no matter how ‘good’ I am it’s ofc only going to benefit my lungs! I just want to try stay sane at the same time 🤣 so pleased it’s been working so well for you that’s so fab to hear, hope you are doing ok x
You're so entertaining 😄🌟💗💓👁️💃
why thank you I try my best 🤣💓❤️
disclaimer: I mix up saying lash lift kit instead of lash dye kit continuously throughout this video oops ✌🏻
The side effects of Katrio take a long time to die down, its strange. It was around 8 months for me, I had all the same side effects you had but they have finally levelled out. One thing some people have found helps is to take a reduced dose then build up ( or just stay on a lower dose permanently)- if you decide to go back on for the sake of your lungs ever.
ahh sorry to hear you experienced side effects too - so pleased they have levelled out tho!! really appreciate you sharing that, yeah I did try to opt for a lower dose but my CF team weren’t keen which was a shame :( hope you are doing well x
@@gingerels Your doctors aren’t advising you very well then, lots of people do it. Thank you, all I can say is I wish I had Trikafta when I was your age, it would have prevented a lot of the damage I have now. I don’t mean this in a horrible way at all, as I understand side effects are not nice and ultimately it’s your life and you have to do what you think is best but it is easy to fall into the the trap of thinking one’s health will stay the same forever. Things can go downhill very quickly, especially approaching your 30s. I was well and it happened to me. Good luck anyway and wishing you all the best !
Hi. Loving this video. Today is my first day on Kaftrio…feel no change yet. I’m looking forward for weight gain and better lung function. How fast does it happen? Lol
aw thank you!! Oh good luck hope it went well - for me I started to notice both the change of appetite & chest within the first few days!! Weight gain happened rapidly in the first few weeks too, but I think it’s definitely different for everyone so don’t be too worried if nothing drastic happens super quick! hope you are doing ok :) x
Sooo interesting! This stuff must be exhausting urgh but I honestly feel like I understand a bit better what these kind of processes entail! Great video as always lovelie xxx
aw thank you so much hat hat!! yes ahh it can be, I’m just so lucky I don’t have to have IVs too often pheww thank you gal much love 🥰 x x
Please check the description for timestamps in case you are squeamish !! There is nothing super gory shown, but you do briefly see some spots of blood & the PICC line ofc 💉 If you have any questions please leave them in the comments!
🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏!
Another ace video, ..personal and informative perspective.. 👏👏💗💖🌟🌟🌟🌟
Thank you!!! Making vids like this is really important! Count me in on the next one, if you want one of the 'ancient' CFers in your video, ha ha. My story deffo has some tangents in it that are a bit different, - while still sharing bucket loads of the usual stuff... Thanks and God bless ♥️
Aw thanks so much for watching!!! yes omg that’d be great! phahah - honestly I think everyone has some wacky twists & turns & then exactly how you describe the ‘usual’ CF stuff 🤣 Take care hope you are well 💛
@@gingerels Seriously, thank you for making this video! I really needed that at the moment!!! I'm kind of in a new situation/environment and with new people around me, who don't understand anything about CF, much less of how much it impacts us all mentally!! They just think I 'have a bit of a cough', hahahahahaha, - yeaaah (aaarrrrrrrgh!!!) So it was really good to be reminded that it's not 'just me' 《《《HUGS》》》
so I guess the answer to 'do all Cystic Fibrosis Patients think the same?' would be no, not really, but also yes sometimes we really do 🤣 I really hope you enjoyed today's video, if you have any questions please do comment them below! Don't forget to like & subscribe, & happy CF Month! 💛 x
Here's a question suggestion for your next one: 'Do you experience seasonal differences in your level of health and if so when and what are they?'
@@ripbbl5053 ooo thanks! That’s a good one - for sure I think stereotypically in winter everyone must get worse right? coughs & colds season & all that I don’t know about you but I often get the more wheezier symptoms in summer with all the pollen! No time of year is safe 🥲😂
@@gingerels I seem a bit like a schizophrenic to people who don't know me very well, ha ha. The seasonal differences are so huge with me... After the summer, I am 'well' /happy/productive/useful to others (work, family, friends) for a few months and then as spring hits I am constantly ill/weak/tired/depressed/.....GRUMPY, ha ha ha! And because it's always the same months each year, ever since I was a little kid, I wondered if others also have whole 'off-season'?
@@gingerels For many years, I had REALLY really bad hayfever for about 7 months each year, but then I cut out wheat COMPLETELY out of my diet and the hayfever decreased by 95% WITHIN DAYS. Try it out =)
...ok.. what WAS the "chuckle, chuckle.. bugger off" question.. 😂😂🤣🤣😉
oh dear it was a tinder message I'd been sent 🤣🤣
Ha ha 😂💃
Have to say.. best video yet.. which is, admittedly, what I think EVERY time 😆😆 Youu really go from strength to strength.. really informative and helpful.. great, natural and funny presentation.. 😊👏👏👏💃🎉💗💖
awww thank you Linda!! phahah hopefully I'll just keep improving forever & ever that'd be lovely 🤪 thanks so much for your lovely comments!! ❤️ x x
@@gingerels 🥳🎉💖
LOVVEEDDDDDD this video!!! The editing, the insight... I feel like I know you even better, this was so well done xxx also big fan of the hair !!
awww thank you so much Hat hat!!!! (I have 2 of your videos to catch up on later teehee I can't wait) omg thanks I had to edit out so much of me fiddling with it phahah x x
@@gingerels ooh fun! I hope you like them!! oh and so so relatable hahaha xx
I have only really had one close friend that has CF and I still love her dearly. With my own mental health I lose time, and would love to see her more, and forget that so much time passes between meetings. As you talked about mortality and how you are dealing with it, do you have any tips that you would want friends to know for them to deal with it? I hate the thought of her leaving sooner then me at all and wish I could cherish so much more time with her, but I don't know how to start :)
Aw I think it's so difficult as life moves so fast & people just move on & drift even when they don't mean to!? It's just so hard to keep up with everyone isn't it :( another fab question tho as chronic illness ofc doesn't just impact the person with it, but family, friends too. I think I'd just want any of my friends to know that those feelings are completely valid & ok. I know it might feel tricky to talk about as you don't want your friend to think you are thinking about their mortality 🤣 but it's only natural & it's really healthy to think & talk about it! I think the best thing is just to try & be open & honest about how you are feeling & once that conversation has been opened up you can support eachother through it - one of my biggest worries is the idea of leaving loved ones behind so I'm sure your friend will appreciate being able to talk about all of that with you x
At the end of the day, are you glad you tried the drug and experienced it? You mentioned too how it did help your lungs, so also, are you maybe having second thoughts of going off of it?
oo good question - I definitely don't regret trying kaftrio at all! I feel so lucky to have had access to it in the first place, & to have had that expereince yes! Aside from that I'm grateful for the reminder to be confident in myself & knowing what's best for me, even if that means doing something my doctors would prefer I didn't do (e.g. coming off kaftrio). In terms of second thoughts, about a month I got an infection & my cough started to get worse again, so I think then I was starting to question oh god should I be on kaftrio, could this have been prevented etc etc - but I'll never know & it's not helpful to dwell. I find it helpful to look back at pics & videos of when I was on it, as I really was so miserable, & when I remind myself of that it helps me to remember I definitely made the right decision for now :)