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Tips & Advice For Living With An Undiagnosed illness!
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- Опубліковано 16 сер 2024
- Living With An Undiagnosed illness | Tips & Advice
0:35 Practical tip to feel better!
2:25 Advice 1
3:32 Advice 2
4:31 Another practical tip!
5:59 A letter I want you to hear
8:15 Advice 3
8:41 a bit about my commonly undiagnosed condition in case you have it too!
These are my tips and advice for living with an undiagnosed chronic illness. It seemed too obvious to state in the video, but of course, the number one thing you can also do is persevere with your doctor or seeing more doctors until you can get closer to finding out what's wrong. And however long, or however many doctors it takes, don't give up! I'm sure you're already doing that though, so these are my best tips and advice to help a bit more :) Keep hanging in there,
Georgina xx
FAQ
I have hypermobile Ehlers Danlos Syndrome, autonomic dysfunction- including Postural Orthostatic Tachycardia Syndrome, cyclical vomiting syndrome and myalgic encephalomyelitis.
I'm a full-time university student & I'm also a wheelchair and catheter user.
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& of course the main thing you can do is persevere with your Drs- however long, or however many doctors it may take, don't give up! 💗
I have been going thru undiagnosed chronic illness which effected my qaulty of life for almost 4 years now and I still am fighting thru it and finding it hard to know exactly what's causing for my horrible symptoms tha I experience daily but thank god I feel like I'm almost on my final journey so pls pray for me and I hope u get better 🙏🙏
Abrar Nasreden I will be praying for you! And thank you so much!
Such good advice. I have an invisible chronic illness and I took my husband to appointments which was really helpful because for some reason what he said had more weight than what I said. I could go into a rant about gender and other biases in medicine but I won't. Great video! New subbed here and I hope we can support each other 💗
The Peachie Spoonie I’m glad your husband was able to help! That’s so true about biases- age is another huge one! I’m hoping this videos will give people the courage and push to advocate for themselves though!
Yep, unfortunately. And there is studies done about this subject. When a man goes to A&E to complain pain, they get pain relief after approx. 20min. For a woman it takes 40min and they give lower dosage of it.
0:35 Practical tip to feel better!
2:25 Advice 1
3:32 Advice 2
4:31 Another practical tip!
5:59 A letter I want you to hear
8:15 Advice 3
8:41 a bit about my commonly undiagnosed condition in case you have it too!
What is also hard is that some conditions overlap or there isn’t just one condition. I’ve been seeking a proper diagnosis now for 4 years and I’m learning more about these illnesses each day. Keep fighting! At some point you will get a diagnosis, and you’re quality of life is more important than it having a “name” right away.
So many great points here!
hi, i had Encephalitis, they didn't find out if it was a virus attack my brain or my immune system malfunction, long story short, i become temporarily paralyzed from both legs, after one year of physical therapy im better, I can walk without cane, but my legs jump uncontrollably and have funny feeling, i also lost my sense of
urination, it become better with time but now i'm a proud bedwetter :) two thing was very hard for me, one accept the fact that i was healthy one time and now im not same. two, they didn't find out why i got sick, so i never know i did something wrong or not. i find your channel very heartwarming, sorry my english is not good, but keep up the good work.
Scarecrow have you heard of cauda equina syndrome? That seems to fit a lot of your symptoms really well, it could be worth looking into that more! & if you ever wanted to, there are many medications you could try for bedwetting. And thank you so much :) Your English is great, by the way :)
I have had an undiagnosed illness and am in a really dark and confused place with it, but this is exactly what I needed to hear. Thank you so much for giving me some hope xx
Keep hanging in there, Sarah xx
I wish I had found this video sooner than I did, but I'm glad to have found it now. I've been suffering with an undiagnosed condition for the past 6 or so years, this week I was informed by my urologist via letter that they are considering surgery to alleviate my symptoms.
I feel so frustrated that it's taken this long, and I'm sorry for oversharing but finding your videos and channel are helping me to remember that I'm allowed to be upset, frustrated and scared during this journey.
Thank you for making the videos that you do, thank you for being candid, and thank you for creating these resources and sharing your experience.
💜
glossmoon honestly, I wish I had made this video sooner than I did, so I’m sorry it took me so long! But I’m so glad they’re finally considering something that could really help! I’ve had a few urological surgeries myself so I know how it can make you feel both hopeful and fearful, but I have a good feeling about it and I wish you the best of luck with it! Please keep me updated!
Exactly, all of those things are normal and absolutely okay 💕 And you’re welcome, thank you for watching!
It's ok mam
I have barely gotten any treatment for my illness. I feel like I have lost so much time and opportunities to be hhappy etc.
We are in this together
Great video lovely. Hearing this would definitely have helped me during the years I was undiagnosed. The impact it had on my mental health was huge and like you, there were times I thought that it was the end for me. I do hope that I'm stronger now because of it and have become better at advocating for myself. But it's also caused irreversible psychological damage I think. I really hope this will help people who are undiagnosed to believe in themselves and know that they deserve treatment and help even without a diagnosis xx
Jenny Cole I’m sorry you went through that too Jenny, it terrifies me to think there are people going through that still so I really hope it helps someone too. I’m so glad you got answers in the end- you’ve come so far & you deal with everything you deal with like an absolute champ 💕 You should be so proud of yourself 💕 Have you thought about getting counselling or some sort of therapy to talk through everything? xx
6 years, undiagnosed 😭
Doing research (within reason) really helped me. I found out what EDS was through UA-cam and also POTS (I'm diagnosed with orthostatic hypotension with tachycardia instead, but pretty similar), I also have other conditions, but these were the main two which didn't fall under anything else. I was going to the doctors from the age of 14 trying to figure out what was wrong and got so desperate by the age of 20. By 21, I was finally diagnosed this year and now doing physio and on medication to help.
I was constantly told there was nothing wrong because my bloods were fine and that it was all anxiety, but so glad I persisted with my GP. It gets better.
Although I'm not "better" I'm learning to manage my symptoms more as time goes on.
Lloyd is Learning I’m glad you’ve got answers and access to treatment now 💕 & by ‘better,’ I didn’t mean cured, I’m far from being well myself, I literally just meant better than before, and that certainly is true for me 😊 and I hope that people who are in a similar position to ours (without answers & treatment for YEARS) will at least be able to ask for something to make them feel a bit better now, & feel validated while they continue searching for answers
@@GeorginasJourney I completely agree. I think it's great you pointed out asking to treat symptoms because I wish I had sooner instead of feeling so stuck for so long.
I'm sure you're helping many more people than just me to feel less alone ❤️
Lloyd is Learning I wish I had too- when you’re going through it, it’s so hard not to let the doctors keep dismissing you, & I really wish I had thought to just ask for something like that a lot sooner! Thank you 💗
Yes! I was also dismissed with anxiety! Now they can not, when I developed screaming red hot full body rash hahhhaaa 😂 That is not anxiety anymore. Hahhhaa 😂 Always look at the bright side of life. I might not get answers, but at least I get help with symptoms!
I am at kind of a low point with my undiagnosed symptoms and mental health. Your video means a lot to me, thank you so much for giving me some hope. I am lucky I found it when I needed to hear all this
You are so very kind! Thank you for all that you said. It really hit home. I don’t know if you realize how many lives you have touched, but you have changed lives!
Wow, thank you so much, that makes me so happy :)
I am currently 2 years and 5 months into suffering from an undiagnosed illness and both mentally and physically I can say I am absolutely exhausted. It is such a rollercoaster of gaining hope and losing it within seconds of a test coming back normal. I suffer from nausea and bloating every time I eat food which lasts for 2-8 hours after eating. It essentially feels like an endless stomach flu. It has messed up my school life, work life, social life, and any life really. I have no life outside of this illness and its symptoms right now and its so depressing because I can hardly do anything outside of being at home. Thank you for sharing your story and tips. Right now has been really rough because the doctors and specialists decided to do no more tests on me at the beginning of the year. Did you ever have any doctors decide you no longer need testing?
Have you had a gastric emptying test? And have you looked into gastroparesis? It sounds a lot like that! Gastric emptying tests aren’t one of the first tests they do, so I’d be really interested in hearing if you’ve had one, as it could give you your answers. And I eventually got diagnosed, so my testing pretty much stopped then
Thank you for making this video🙏 The undiagnosed period was the worst time of my life and I thought I was going to die. I felt terrified, alone & bloody exhausted. My mental health was in pieces because of my physical health and it gives me slight ptsd now thinking back to that time. This video made me tear up because it's so close to home, but it is such a MASSIVE issue which is rarely discussed. A doctor once said to me "there's a lot of things in medicine that we still do not know" and that really shocked me. I always naively thought doctors knew everything. I am mostly diagnosed now but I still have an undisgnosed problem. I used to get frustrated when the doctors tried to treat the symptoms rather than find the cause. But I came to realise that it doesn't matter that I have a diagnosis as much as I thought it would - the problem isn't going away. Disgnosed or undiagnosed management is the saviour here. Thanks for making your videos and I hope that you will continue to make them, because they help me so much and I am sure they help lots of others as well. I don't have the confidence to make videos and share my story online, but I'm really glad there are youtubers such as yourself I can talk to. You were made to help others❤ You go girl💪
E E this topic really meant a lot to me too for the same reasons! Oh I didn’t mean that people should just get treated for the symptoms straight away, I meant it for the people who have had years worth of tests and they still haven’t been offered anything to help them because the tests came back negative. I wish I’d clarified that now, but that’s what I meant! And thank you so much 💕
@@GeorginasJourney I don't suppose you know of any good pots clinics in England? Or do you have friends that could recommend somewhere? I'm at uni now but when I graduate I'll be going back home, but I don't know where to ask for a referral to. I'm based in south england but I'm willing to travel if need be xx
E E I think he’s London based but look up or ask to be referred to Dr Gall! He seems to be the best for pots patients in England from what I’ve heard, and he also does other tests and referrals for other symptoms and looks at your health problems as a whole, which is quite rare. This all from what people have told me, but hope it helps! xx
@@GeorginasJourney brilliant, I'll look him up. Thank you so much! Xx
E E you’re welcome! Pretty sure UCLH (in London) has an autonomic unit as well which I’d imagine is good xx
Thank you for being such a strong and guiding voice in this community! 💕
Fiona M that’s so kind of you to say Fiona! Thank you for always supporting me 💕
I will keep coming back to this everytime a test comes back normal or a Doctor is not hearing me.
Please do. I see you and I believe you.
I've lived this video. This was so good. Thank you!!! I spent 7 years with just a CFS and hypoglycemia diagnosis (had to fight for those; the doctors kept thinking it was just my chronic sinusitis/"allergies."). I was just diagnosed with POTS and EDS and Raynaud's, and my Dr (finally found a helpful one this year!!) suspects MCAS as well.
Elisabeth Bjork, collaborative pianist thank you & you’re welcome :)
Thank you so much for doing this video, Georgina! You shared some very helpful tips and encouragement.
Kim Felix thank you! I hope it helps someone!
Great video for a very important subject that is not talked about enough. Thank you for shining some light in it.
Anita you’re welcome! Thanks for watching Anita! I really hope it helps someone :)
Georgina's Journey I am sure it will. :)
Anita thanks 😊
I'm really glad I've just found your channel as I am currently at the start of this journey. I like the fact that the two videos I've watched so far are very positive and help me feel like it wont be the end of the world if I have a chronic illness.
So I noticed in your older video you said you have ME/CFS, was that a misdiagnosis and you actually have EDS? Or do you have both conditions?
Thanks xx
Amber Jean it definitely isn’t as bad as it all feels at the beginning! I have both conditions xx
Thank you so much for doing this video! It is actually exactly what I needed to see and hear today.
I am currently in the process of getting diagnosed, but until now every test came back negative, no doctor had a reasonable explanation for my symptoms etc. I did mention EDS because I feel that my symptoms could be explained by that (or something similar), but it was brushed of since EDS is not a very common illness. My plan is to check in with my GP again and then maybe see another rheumatologist or orthopedist (or anyone else, in hope that they will put in some effort in finding answers).
I did get some pain medication that is normally used for pain management after surgery or when tumors cause pain and I am supposed to take them when I have a day with a really high pain level. Hopefully those will get me through tomorrow; I finished school this year and we will be given our diploma tomorrow.
Greetings from Germany & all the best wishes 💕
Karen Henning sounds like a really good plan Karen, hopefully you’ll find a doctor who is less dismissive soon! And I hope the pain medication helps in the meantime! & huge congrats on getting your diploma! That’s amazing, well done!
Congrats on the diploma!! Hope that you soon get the answers you need regarding the health problems
Thank you for this video
It's really needed right now
I'm not doing so well atm but I'm going to try to remember that it'll get better
That I can do this
💗
Georgina I was wondering if bed ridden happens at all now?? Some days even after being diagnosed I still get those horrible fatigued days. Much love and love this channel xx
Joshua Baker hi Joshua! Yes, I still have days like that (& weeks if it’s really bad)! Don’t be deceived by my videos aha, I do still have those days too! They are fewer and further between now though, I’m sure the same will happen for you too, so keep hanging in there! xx
Georgina's Journey thank you!! Xx
I have just stumbled upon your channel when searching for ‘chronic nausea remedies’ and boy am I glad I did.
I have been unwell since May with no diagnosis apart from ‘gastroenteritis’ back in May, which was just the doctor fobbing me off. Since then I have had severe nausea with no let up & extreme fatigue. I am yet to get a diagnosis and I have never (mentally and physically) felt so bad in my entire life.
Would be great to maybe connect and talk this through with somebody who can relate 😩. Do you have an email or social media platform I could reach out to you on? x
Katie Shaw Hi Katie! I have an Instagram which is @georginas_journey , would that be okay? x
Fab! Thank you. I have messaged you there 💕🙏🏻
Maybe I just feel this way... but I'm pretty convinced Nothing will get better. Everything's shit. So much money I don't have. So much waiting for "we can't see anything". I'm giving up everyday. I'm waiting around for nothing. NHS have turned their back on me due to covid too... 2 years of nothing.
Thank you so much for this video. It has been 2 years of being undiagnosed with more worrying symptoms and about 3 I think with one minor symptom that grew worse. For me my doctor just did the last test to rule out something and then they said they would start symptom treating (there are more tests but that was the last one they could think of that elimated common causes). For me telling teachers is hard originally but got easier but the harder part was telling them when symptoms are bad. Sorry this is so long. By the way, your channel is amazing. I heard of having people in my family in the past having hEDS, and it sounds like me. While doing research I found your channel and it has helped me so much. Thanks.
I hope you're able to get some answers soon, if you haven't already, it sounds like you've already made some good steps forward :)
This is so helpful. Thank you for this ❤️
Kayla Cote 💕
Thank you so much this video means so much ❤️
Megan Smith you’re welcome 💕
I definitely needed to hear this 🙌
Thank you 💙
You’re welcome 💕
It gets harder and harder to have a quality life after decades of being dismissed by doctors. The trauma from being told you’re a liar, you’re exaggerating, women just do that sometimes, you’re drug seeking-you can’t be in that much pain, you’re too young to be sick, you’re too thin to have that, you’re obese-just lose weight and all your problems will go away,etcetera.
I’m 68. I’ve been subluxating and dislocating joints since I was 8.
I’m trying to hang in here, but 60 years of pain and disappointment have me battling a deep depression.
I hope you take your university degree and find an employer who offers you a flexible job that you’ll love because you are special. 🤗
Have you spoke to a doctor about the possibility of EDS or HSD? Most doctors aren't good at recognising the signs hemselves, but I would hope they would look into it for you if you ask about it. You could also have a read through the 2017 hEDS criteria yourself online and see if it sounds like you fit it- and if so, possibly print it and take it to a doctors appointment (& any further appointments like a rheumatology appointment for example) and ask them about it. And if all else fails, know that I hear you, I can relate to your experiences of subluxations and dislocations and you're not alone :)
@@GeorginasJourney Thank you for hearing me. I have given my doctors the criteria listing. My rheumatologist dismissed Ehlers-Danlos because I don’t have stretchy enough skin!!
I live in a rural city with limited doctors in specialties.
Again, congrats on your degree and many years of joy to you 🖖🏼
Thank you so much for your inspiring channel, Georgina. You really are a light in this world. You've actually inspired me to start my own channel all about dysautonomia and POTS. I'd love it if you could check it out :)
Thanks again for all your hard work and endurance!
She is so inspiring!! I'll check out your channel too! :)
Mrs. POTS thank you! And good luck with your channel! I just subscribed!
@@GeorginasJourney thank you so much!! You're a gem. I hope you have a WONDERFUL day 💕💕
@@whitney8931 she's so sweet. 💕 your channel looks great!
Pain even worse now. Im getting 4 hours sleep. Doctor was unsympathetic, I cannot eat due to sick stomach and light sensitivity alone during the pandemic. I don't know if there's an undiagnosed diseases network but I can't sustain this
There is a chronic illness community on Instagram where you can follow people with similar symptoms and stuff- what you’re describing sounds like M.E (myalgic encephalomyelitis)
Hi Georgina, I know you tried the DNRS program but have you read Healing Mystery Illness by Medical Medium Anthony Williams. I'm doing it now and it's really amazing.
starlingdarling I’m glad you’re enjoying it! I actually don’t have a mystery illness anymore, so I don’t feel like I need to read it
What if you are denied a second opinion dye to autism. My blinds were taken down i thknk it was a safety reason but I spent a miserable summer and am now very depressed. My issue affects my eyes and my head. As years went I lost the ability to sleep for very long. I was denied sleep study. Im autistic and every summer I spend crying as I cannot bear light
(yes ive tried glasses also hate sound too) the days im well I tolerate it just fine. I wake up sick. I have it 18 years and ive severed ties with my family who think its in my head. I tell myself I have no right to sleep much. Its very very hard.the days are agonisingly long dizzy and sick.
Sonicz Forever I’m so sorry you’ve going through that :( Who is denying you a second opinion? Can you not phone your doctors practice and ask to speak to a doctor? They’re doing phone appointments atm which might be helpful
@@GeorginasJourney a lot of consultants have due to my autism and anxiety im not worried about something when I get sick so it's persisted. I take benzos result the issue remains and im quite frail. You know how hard it is to fight your corner. Fortunately though I can work from home which is crafts that gives me a sense of power and exercise. Hopefully I'll make some progress. I know it will improve at some stage. Wish you well.
I’m 1 year still undiagnosed I’ve got an appointment tomorrow to send me to, rheumatology, neurology, OT or pain management or a couple of them my peads team didn’t know what’s wrong with me so there gonna send me there 😂
That sounds like a really good step forward! I’m glad you’re seeing some new doctors and specialists!
Great stuff Poppyx!!! 💖💖💖 Sending much love 💖💖💖
@@SatumainenOlento update got a diagnosis and starting pain management next month x
Would you be willing to share what medications you're on/the main things that have helped manage you medically? I'm so done with bladder spasms/infections and so done with nausea (although I think we've explored every Avenue now) and I'm so done with tachycardia and I just want to know what other people take to feel even slightly on top of things :/
Sophie Hobley absolutely! I’m actually planning on doing that as a whole video in mid July (I’m moving houses twice very soon, so it will have to be after my second move unfortunately). I will say though, I haven’t found much relief from the bladder problems & what most of what I use for that isn’t prescription, so I’m not sure what I’ll do about that yet. I’ve got a lot of tachycardia & nausea meds to talk about & share though! xx
@@GeorginasJourney I guess nausea and tachycardia are more universal - with bladder symptoms everyone is on such different paths, like you ISC whereas I have an SPC and some people have indwellings and some people just have bladder problems but dont quite need catheters, or they have more incontinence than anything, so I guess it's more complicated - I would be interested in what non prescription stuff you take - my GP is fairly comfortable discussing things like that with me and if she's unsure she takes it to the specialist pharmacist to see if it's safe for me.
Ugh, my body is just super duper on strike this week and I'm oroperly bored with it
Sophie Hobley nausea can vary a lot depending if you’re tube fed, on TPN, whether it’s constant or episodic, mild or acute etc, and same for tachycardia, with some people needing pacemakers, ablation, surgeries etc, so I think everything is different for everyone, I just personally haven’t found what works best for me in terms of bladder spasms & infections yet.
Hope next week is better 💕
I have something I have dissociated seizures but I have no bodily signs of epilepsy and some of my symptoms I can't monitor because I fall unconscious they have found that I'm sensitive to light but not like someone with epilepsy. I'm scared because I can't do things most people my age I can't drive or get a job (I'm applying but can't even get an interview) and my family seem embarrassed by it because I try to say that I have something but they say that I don't have epilepsy (never said I did) so I shouldn't mention it. My neologist seems very disinterested in my condition. Idk what to do I want to have a purpose but I can't get to anything I want because of requirements. So any advice would be great.
Have you looked into FND? It can cause non-epileptic seizures which can be quite debilitating like you described, so it may be worth asking your GP or neurologist about it. I’m struggling to find work atm as I’m only well enough to work for about 1-2 hours a day, so I’m looking for remote work with flexible hours. I don’t have any advice about what type of jobs fit that criteria, but that’s what I’m personally looking for (for now), if that helps at all x
Hi, I would really love to connect with you - I have similar symptoms and would really appreciate some advice? Thanks!
I am suffering from an undiagnosed illness and would love to add your socials!
Hi Dana! You can find me on Instagram at @Georginas_journey 😊
Hiii Georgie! If I may ask which brand of crisps do you prefer when you get symptomatic? Cheers, lovely!
Ally Goyer Hi! Do you mean for POTS or nausea? For nausea, I’ll only eat plain or ready salted (any brand) & if it’s for salt content for POTS, literally any crisps as long as they’re vegan! Haha, not sure if that helps 😅
Georgina's Journey hello! Thank you so much. For nausea from POTS I apologize for not being specific. Sour candy didnt work for my nausea in fact it made it worse! Grrrr! Salt pills make me so bloated ugh! Thank you hope you are keeping safe
I’m 13 and I’ve been undiagnosed for about 6 months always in bed and I can barely walk it’s rubbish 💕😕
Chronically.poppyx hope you can get some answers soon, it actually took me 6 years in total to get my main condition diagnosed, I hope it doesn’t take that long for you 💕
Is it normal for people with chronic illness to lose hope in doctors sometimes?
A doctor told me I have joint hypermobility syndrome last year but he told me to focus on my fitness and health and told I would feel better. I have improved but I feel like I have lost so much time, missed out on so much good moments. I feel very bad for not going to more doctors. I should have probably gone to a orthopedist. But I was always scared to go to the hospital and it was so hard for me to explain to the doctors and I barely had any mental support from anyone. is it ok if I consult an orthopedist now although I have improved a lot
Sry Im not very good at explaining hope u understand what I said
Yes, the whole message of this video is for people who had lost hope in doctors. And yes, you can still do that
One trouble is that we learn to act so well (everything is fine!) that when we finally crack and allow ourselves to be vulnerable, nobody believes that we can't handle it. Nothing's changed, so why are you so weak and needy? Okay then. Never mind. I'll deal with it.
6lenin66 then tell them something has changed. You don’t know what, but something has changed and now you’re not able to do the things you once were, etc. It’s up to you to tell them & help them understand the things they can’t see. If you don’t say it & explain it, then they’ll never know. A lot of people didn’t believe me to begin with & that’s really hard, but from their perspective, it is a hard thing to comprehend when everything seems the same to them. So just keep telling people when you need to & slowly people will begin to understand
Yes! To this day I always tell people that I am doing well even when I am NOT. It's like some kind of compulsive thing that I do to always be cheerful, pleasant and pretend like everything is ok
@@GeorginasJourney I hope so, but people are impatient and truly don't understand, Chronic illness isn't about willpower or mind over matter.
6lenin66 you’re right it’s not about that at all, all we can do is keep explaining it to the people who don’t understand. I deal with this too, especially if it’s someone who really matters to you, don’t give up
@@Slastukin67 That is a great observation! "Mind over matter" Yes, it does not work like that! But I did not realise how I was still holding into the idea of it and other people for sure! Thank you!!!
💚💚💚
thanks
How did you get POTS?
Justin I have a genetic connective tissue disorder and POTS is a co-morbidity of that
Georgina have u done MRI?
bismut life no, I haven’t. Doctors did not think it was necessary
@@GeorginasJourney but if is something wrong about the brain(brain fog, impaired cognition) the exam will show right?
bismut life not necessarily. But it doesn’t matter either way as my doctors aren’t doing it. I’d like to have it done, but they don’t think it’s necessary so they’re not doing it
how could I email you x
Daisy Kelly I’m going to delete it after you’ve replied to say you’ve seen it, but I’ll put my email address in the comment below x
@@GeorginasJourney got it thank you so much xx