Invisible Chronic Illness Tag | Sophie


Well hello everybody and welcome back to my channel, or if you are new Hello welcome to my channel. I hope you’re all doing really well today. So for today’s video i thought I would do an updated chronic illness tag but it is like living with a chronic illness tag, so yeah I thought we would do that so let’s crack on with the video. Question 1 is the illness or illnesses that I live with and I live with EDS, PoTS, Gastroparesis and Mast Cell Activation Disorder. So, I have done a video for EDS and PoTS on what they are so if you want to find out what they are then i will leave the link below and I am gonna do for the others soon so i will leave the link to them when I have done that. question number two is when were you diagnosed with the illnesses. Gastroparesis I believe was in 2011 like the summer of and then EDS was 2015 and that was suspected for ages before the diagnosis and as with all of them and then Mast Cell and PoTS were last year so 2016. I’ve had symptoms of these kind of well before they were diagnosed as with a lot of chronic illnesses. I think probably like since I was pretty much born I have had symptoms of and I had things here and there and that we never really pieced together until we were diagnosed with the conditions and I kind of knew what they were and then I was like, Oh that makes so much more sense so probably like majority of my life number four is the biggest adjustment I’ve have to make. Literally like everything Hashtag living with Chronic Illnesses. would probably depend on when you ask me that if I am having a feeding tube then obviously my biggest adjustment is dealing with a feeding tube, but other than that if I don’t have a feeding tube, I think it’s just kind of pain management and how I deal with pain and lightheadedness and stuff like that because I have really had to learn how to deal with that so I think I probably that. Number five most people assume…. Most people assume that you are exaggerating your condition or they’re not even that because they are invisible illnesses. People just assume that you’re either making up for you’re making it worse than it is kind of for attention or like yeah so I would say that is probably people’s biggest assumption. So raise awareness for that invisible illness because they are there and they are real and they’re not exaggerated. If anything they are under exaggerated. Just putting that out there. Number six the hardest part about mornings, is probably, get out of bed, do my medication and get on with my day. Number seven – My favorite medical TV show. I don’t really watch medical TV shows, I feel like I get enough hospitals by myself Number eight is a gadget I couldn’t live without and it would definitely be my iPod. My music is like my life, it helps with anxiety it helps when i’m bored and waiting for appointments sick in bed like I my iPod *hallelujah* Number 9 – the hardest part about night The pain that I tend to have in the evening from like everything in the day or eating and then just knowing i’m not gonna sleep kind of makes you more anxious and you get vicious cycle and then yeah. Number 10 is how many pills and vitamins do you take each day and this question kind of various as my medication gets changed quite a lot and some are added and some taken away but i would say the maximum I’ve reached is like about 26 a day and then at the moment I think i’m on maybe like 12 a day and then every 2-3 weeks I have two injections as well so yeah – Number 11 is regarding alternative treatments – I …. i have tried some alternative treatments and for me personally they haven’t worked and I, my brain hasn’t really been like really like this is gonna work even though I have gone in with an open mind but you always have thought about the back of your mind for me personally they haven’t worked but every person is different so I do definitely think trying them is a good thing. Number 12 – if I had to choose between an invisible illness and a visible illness I would definitely choose a visible and that’s not to get any more attention or anything because people can see it, it is because people CAN see it and they don’t make assumptions that you’re lying or that it is in your head and your looking for attention and they don’t make nasty comments, you don’t get nasty notes left on your car if you park in the disabled bay and also doctors, like doctors can then see and you don’t have to kind of convince yourself that you’re not lying, Number 13 is regarding work and careers. I have been someone who has always worked through, I know everyone is different and in different positions physically and mentally and whatever. I have been someone who has always gone to work i have had time off for operations and stuff like that but even when I had a feeding tube I still worked and I will always work. I’m just not someone who mentally can sit and do nothing I don’t like it. In terms of career it can be difficult and you can’t necessarily do things the way you have planned it in your head. I believe that you can do anything you want you just kind of have to find a way around it so it never give up what you want to do because there’s always a way around it and you can and you will achieve it so yeah. People would be surprised to know… – I think for people that don’t know me and what I do, people would be most surprised that I do cheerleading because obviously it is a very physical sport and with EDS and PoTS and not eating properly it can be difficult and people would think that I wouldn’t or couldn’t do it but I do… Number 15 – the hardest thing to accept about my new reality is… I think it is probably that I can’t just do stuff I have to plan a bit more and i have think practically about situations and lots and lots and lots and lots of appointments like… lots of appointments. Number 16 – something I never thought I could do with my illness was…. initially it was cheerleading, I thought it was always out the cards, that I would never going to be able to do it until I just went for it and found ways around stuff but i think it would just be getting out mentally of my own head when I you get into a bad situation – 17 – the commercials about my illness – what commercials? 18 – something I’ve really missed since i was diagnose is… eating. i miss eating food so much i was such a foodie before all of this kicked in. I love my food my junk food, pizzas like even my vegetables and fruit, I just love food and now it’s not it’s not so easy. Number 19 it was really hard to give up… i think I just answered that in the question before Number 20 – is a new hobby I have taken up since being diagnosed… and I mean I have taken up cheer which I didn’t do before. I think I have done more sudoku than before I was diagnosed. There’s nothing in particular really. 21- if I could have one day of feeling normal again… I would just do a ton of stuff, relax and not have to plan things just go with the flow. Number 22 my illness has taught me that… you need to appreciate what you do have when you have it and that actually anything is possible regardless of what situation you’re in and I think we all had a period of time where we think I can’t do this because and it’s like, yes you, there are people worse off doing that or other things and just to appreciate what you have like I never appreciated eating I just ate and enjoyed it now like anyone that can eat normally has like a halo around their head and is like a queen but no like just seriously is like to not give up and push for what you want and that i need to appreciate what I do have and not think about what I don’t have do you want to know a secret? 1 thing that people say that really gets under my skin – is definitely, oh well you look fine so you must be fine okay can you see my insides girl cuz I don’t think you can. …but i love it when people are understanding and support you in whatever way you need but also that they learn and they take the time to want to learn and to try and learn about whatever illnesses you’re going through and then they appreciate what they have because they can see you know a different side to it and they’re not oblivious and they’re not you know, they’re willing to learn and yes I think that is a really cool thing to have. My favourite scripture or motto to get me through tough times … is well, I definitely have two the first one I think everyone knows it is ‘Stay Strong’ – I have it on my necklace, I say at the end of all my videos, I put it at the end of my blog posts, I literally put it everywhere and my second 1 I think some people would have heard is ‘every obstacle that is put in your way is a stepping-stone to something that you thought you could never achieve’ and well just like Demi Lovato’s whole quote book Love it. When someone is diagnosed I like to tell them … There’s two things that I would say to them. The first one is learn about the condition butt learn it through other people that have it. Do not google it google is great but it’s not always right and it says things in a way that maybe you interpret it wrong so talk to someone who has a condition who live with it every day and really truly understands it on a much deeper level then google or a doctor is gonna understand it and they will also help you find ways to deal with it mentally and physically so definitely do that and look for supports groups. There’s loads of facebook pages and stuff like that. And the second one is whether your condition is curable or non curable – it’s not the end when I got my condition diagnosed, i thought okay great, then i got told that there is no cure and I was like oh, and then I got into this mental cycle of what’s the point of even trying but it’s not the end, like honestly there is a way around it , you will find things that you thought were great or you thought you knew someone and they are your true friend and then you find out who your real friends are and you just find new things in life and new ways of thinking and stuff so it’s not the end don’t give up stay strong and you will get through it. 27 – something that surprised me about living with a chronic illness is, I think it surprised me how it has also turned my way of thinking around and how I see the world and things around me I The nicest thing someone has done for me when I wasn’t well – is I mean my family have done loads of things but things that aren’y my family that stands out is my best friend she would come to the hospital every single day after working and would actually start early so that she can finish early and come to see me and she would literally sit with me for hours, just watch TV. I get involved with the invisible awareness week because it needs awareness. Invisible illnesses are real, they are there people living with them every day and they’re real, just because you can’t see them doesn’t mean they’re not real so I support it and I’m totally with it and I want to raise awareness and I hope to raise awareness in the best way i can and i have ways in my head that I want to do it in the coming year and i hope to achieve them so yeah watch this space. Number 30 – The fact that you read/listened to this means a lot because… I know some of you won’t have illnesses and some of you will and it means a lot that you’ve taken the the time to kind of learn more about living with a chronic illness rather than just oh you’ve got that great cool see ya like you taking the time out of your day to read this or watch it or whatever you have done with it and I think that’s really cool so yeah, from me and maxi, thank you 🙂 you gonna say thank you (to maxi) Well that is all for this video. I really hope you enjoyed it or learnt something or feel less alone if you have a chronic illness I don’t know – I hope that you enjoyed it and if you did definitely be sure to give it a big thumbs up so i know that you liked this video. My last Chronic Illness tag did so well so i thought i would do a kind of more in-depth one that you can learn a bit more. I hope you enjoyed it and if you are not already, please be sure to subscribe. I know Youtube are having some problems with people being unsubscribed and stuff so definitely make sure you’re subscribed. If you have any questions about chronic illness or questions about me or anything like that i am going to do a Q&A soon so definitely be sure to leave questions below in the comments or on any of my social media which is in the description box below And right up in that corner I’m going to leave a link to my last video which was hilarious so I definitely think you should go and watch that. I know you have all been loving that so far. And right down there I am going to leave a link to my last Chronic Illness tag so that you can go and check that out if you haven’t already and I think that everything so until next time keep watching, stay strong and stay safe. Bye guys x

7 thoughts on “Invisible Chronic Illness Tag | Sophie

  • Snap girl! We live with the same illnesses! Loved the video (might do a response video of my own!) keep on being zebra strong!! 😘

  • I have been living with a long history of disabilities since birth.

    Retinopathy Of Prematurity is when the blood vessel inside the eye detaches away from the eye when the baby is born. I also have had a stroke when I was. a baby.

    For most of my childhood I was in the hospital having 🧠 surgeries. I also have Cerebral Palsy and Juvenile Rheumatoid Arthritis. Juvenile Rheumatoid Arthritis is an autoimmune disease that causes inflammation and swelling in the joints. Cerebral Palsy is caused because of brain damage.

    For most of my childhood years I have had nothing but brain surgeries and I have shunts, witch drains spinal fluid from my head to my stomach and sometimes I have to have brain surgeries. Throughout my childhood I have had over 50 brain surgeries.

    I have also had surgeries for hip displasa and when I was a baby I had a cyst on my hand and I have also had a cyst on my brain stem.

  • AWESOME! Great video. I'm a quad from playing football. I've subscribed to your channel. Please subscribe to mine so we can support each other spreading positive messages. Thanks and have a blessed night

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