PoTS Explained & Chronic Illness Tips [CC]

PoTS Explained & Chronic Illness Tips [CC]

OMG, Ok… We are gonna have such double chin in this video… Oh dear… Hello lovelies! Welcome to my living room floor, it’s very attractive Also hilarious because my brother and I bought exactly the same rug without realising Point to you if you can guess where this rug is from I used to spend a lot of time on the floor- about 60% of the time. The other 40% was lying down in bed. My mother and I used to joke that I could recognise a place by its ceilings and it’s kind of true… I still spend a lot of time lying down but I’m a lot better now. I can sit up in the car rather than lying down on the back seat and I can actually hold my own head up Excellent! Also being able to hold my head up is quite a change… Also I can stand up for more than 2 minutes at a time without fainting. Genuinely, my life is amazing compared to what it once was and I still only leave the house twice a week! Normally when I’m stuck on the floor I don’t film because I can’t exactly set things up around myself I just generally feel pretty pants. Kind of hard for me to follow my train of thoughts I wanted to talk to you about why I’m on the floor so often since I know I’m not the only one and I hope it will help you explain to other people . what’s happening to you. So you can send it to them and be like Look! not just me! I am not the only one who lies down all the time I have a condition called PoTS, which is For some reason I can never remember that It’s related to my connective tissue disorder, which I’ve explained before, card above When a healthy person stands up their blood vessels contract and their heart rate increases slightly to maintain the blood supply to their heart and brain. My blood vessels can’t be arsed with that This is what happens to me Instead, all of my blood rushes down to my feet, turning them purple My heart races, my face goes white and- whomp!- I’m gone. Fainted on the floor. It takes about three seconds. If I stand up to quickly, obviously, not like every time If I stand up slowly we are ok Other symptoms include: I’m saying this so cheerly! “Other symptoms include…” I mean It’s not always that bad, things that can make it worse include being tired or ill If I have my period… The whole week on the floor And I can’t definitely not film in that week because lights Light kills me Even on days when I’m feeling at my tip-top best, I have to be very careful when I stand up If I do it to quickly, then whoosh I hit the floor Fortunately my wife has the world’s best reaction speed and she tends to just grab me very quickly Which is good otherwise there’d be blood and brains Even if is a really bad, lying down does help Specially for some reason, the floor A hard floor vs a soft bed Idon’t know why it just really helps me Sorry I’m blinking so much from these lights As do things like… Making sure I don’t get dehydrated because wow that’s bad Dehydration murders my brain If I could avoid my period I really would Actually it’s never even a week, it’s like 9 days. Who else has a 9 day period? Women’s issues… I can’t even have children so it’s a bit unfari They also exacerbate symptoms But fortunately I can’t eat them So I don’t, there you go I know the Chronic conditions may be all very different and have symptoms that are in no way similar it’s a whole spectrum as well But I think the life advice is generally the same Whatever kind of chronic illness or conditon you have Or even if you are someone who is suffering for something short term If it’s just an illness you are getting right now so Here are my tips, my 5 tips for living with a bad illness If you have a goal make sure it’s achievable. I’m not saying ‘make enough money to be entirely self sufficient and payed a maid’ isn’t possible It’s not, however ‘tango on the moon’ that might be I mean obviously please if that happens film it I need that footage That would make my year My life maybe Someone should do that No something that would make my life would be Fast and Furious I want to go to a Fast & Furious premiere Try not to fit too much into one day- don’t rush, there is always tomorrow. and if not tomorrow then next week looks pretty free. I talked about this in my spoons video. Learn to live within your limits and save some of yourself for later. No pushing. Save yourself, you don’t have to go all out If there’s a date in your diary that can’t be moved then resting beforehand is actually an active doing Equally, resting afterwards is doing because it’s recovering. No need to feel guilty. So technically you’re achieving things left, right and centre. I don’t care what you think you have to do. Drop it ok? You definitely won’t be able to do it when you’re too ill to form thoughts Stop now and you have a chance of recovering in good time. Do I follow my own recommendations? No Do I overwork myself and push for things that aren’t possible? Yes Yes Ido But I’m a work in progress. I’m just trying to get on with my life like everyone else Just got a few challanges But hey we all do! Just different, we’ll all get there in the end If you’re looking for more information then there is an amazing website called that has a ‘living with pots’ section and some really great suggestions and ideas of things! Also, ice cubes! I live in England and Istill get overheated and fail to maintain a normal body temperature I hope you enjoyed this video, hope you can take something from it Share it with a friend If you feel they needed Specially if they feel like they are all alone, and they are the one who just needs to lay down on the floor alone It’s not true, I am lying on the floor too Studying the celling… I should get more interesting lights in my house…

100 thoughts on “PoTS Explained & Chronic Illness Tips [CC]

  1. I have super low blood pressure from my chronic illness so I relate to this so much. Also crawling (usually to get and drink an insane amount of water.)

  2. I used to have a period that long too. It only happened every 33 days though so I didn't mind it quite as much. I don't get a period anymore because I'm on testosterone, though. I know folks who get endometrial ablations to avoid them but the endometrial lining can grow back. It's also a tad extreme for many folks but it's a thing.

  3. I literally haven't left bed since 8pm lastnight. It's now 12pm and I am still not sure if I will leave today. 🙃

  4. Is it possible to have weak shaking legs during walking and have seizures with pots? Do you need a wheelchair?

  5. I have that exact same rug in my dorm room, and I must say it does make lying on the floor much more comfortable 😛

  6. OMG, THANK YOU FOR THE GIGGLES!!! I REALLY NEEDED THAT! I just found your channel, and I've been really feeling… I don't even know the word to describe my emotions, just… I guess knowing that I'm not the only one "lying on the floor" for a majority of my life really helps, though I wouldn't wish it on anyone 😉

    Thanks for the great video, you really made me laugh, and I definately clicked your video since it looked like you were laying on the floor, and that's been me pretty constantly lately… Or deciding that I "need" to get things done, and then passing out… And THEN spending quality time vertical haha!

    Thanks for being awesome! *spoonie hugs/ POTS hugs… I think you said you had pots… I'm very brain fog, I had to rewind your video 3 times to figure out what your second tip was… I forgot now, but it was a good point, hehe *

  7. Pretty sure I have pots or mcas, thank you so much for your videos about this. I hope to find a wife that takes care like claud does you !!

  8. I have depression / anxiety / OCD and I really struggle with my energy levels and not pushing myself past certain limits, especially at university. My last exam this year is later today and I feel terrible and may need to retake it, but this video really helped me realise that my lack of spoons and one retake really isn’t the end of the world. Thank you

  9. I stumbled on this video at 3am when my pots induced insomnia was running wild, but this video left me in tears. It’s the first time I’ve seen someone talk so candidly and positively about living with pots, and talk about it like it’s a real thing that can be a difficult to live with but you can still improve upon. Thank you so so much for making this because it’s such a useful thing that I can direct people to the next time I get asked about what pots is and how it realistically impacts your life!

  10. I have a condition similar and when I’m on my period I can’t do anything for a whole week until I went on the pill and could skip the periods

  11. Talk to a doctor about the period thing you can get a depo shot to stop the period so you don't get whammyed every month. (My doctor mentioned it)

  12. Almost every person I’ve talked to with POTS has dropped public school and switched to online school because it’s easier. I want to do that extremely bad because I missed over a month of school last year but my parents think I need the socialization even though I suffer on the daily. How do I convince them to let me switch?

  13. I’ve watched your vintage style and hair videos and never realized you had pots (which I was diagnosed with about a year ago) it’s so crazy it’s like you’re describing the same exact symptoms as myself and with pots that is so incredibly rare what a crazy world we live in 💛

  14. I have this too, but I don’t really faint I just kind of go blank in my mind and it shows even more since I am also autistic. Meds and tests are a regular thing since I first experienced symptoms a few years ago. I live in the US and medical care can be crazy sometimes if not absolutely insane, not sure how it is in the UK but I hope you’re getting the care you need regardless. Best of luck to you dear. ❤️

  15. Long periods here too! I control them with a birth control pill now, so they're only about 5-ish days, which makes a huge difference. But they used to be 7 days minimum, and my longest was 15. I don't have PoTS, but I do have orthostatic hypotension, so going from lying down/sitting to standing can be a fun adventure in trying not to faint for me as well.

  16. I was just diagnosed with POTS this week and have been feeling really frustrated and everything with it.

    Thanks for sharing, it's helpful knowing other awesomeeee people have it.

  17. Seeing another lesbian with POTS makes me so happy. It’s so rare to see representation for one part of me, and both ?? I’m so happy you make these videos, it’s so comforting to see another lesbian like me 💜

  18. So nice founding a youtuber that has the same illness as me. No one knows about it and I am so glad you are raising awareness about it!

  19. I also have POTS and it can be rough. I tend to have more issues if I get up in the middle of the night and dont take my time. Bam I fall. It doesn't help that I also have SVT so my heartrate is always fast. When I had my period before my hysterectomy they lasted 2 weeks and came every 2 weeks. Ugh I dont miss that.

  20. I love you! I already watched you alot and I never realized we both have this. Mine is Idopathic POTS but its very severe for some reason and I'm trying so hard to find ways to keep from having flare ups so I can keep my job so thanks for the tips ❤️❤️❤️ your gorgeous and I wanna have your style! :3

  21. I ve been watching your videos for a few months and love how informative they are. I had a bad virus and some tachycardia and dizziness so ended up in a&e last month and a doctor mentioned getting tested for POTS. And this morning I ve fainted for the first time and another doctor is pretty confident I have it but all I can do is wait for tests so I m trying to be a positive as you are in your videos.

  22. I've always thought I had ME. But recently a friend of mine, who has POTS, suggested to me that I may have it as I show all of the symptoms he has, and then some. It'll take a while for me to go through the process of finding a doctor and what not, but I'll get there one day!

  23. You are so lucky you married a woman. Your life would be utter misery if you married a man. I don't have any desire for women sexually, but decided to marry a female regardless because I realized how happy I would be to have someone who actually understands me and can actually COMPREHEND the definition of emotions.

  24. This helped my anxiety lol. When I stand up my heart rate increases and ofc my anxiety is like "oh no!! That's too much!!! You're gonna die!!!!" And then it gets even faster lol and in my head I was just going "pots..pots..pots.." even though it didnt quite make sense (theres anxiety for you) so I came here and watching this video made it better!! I love watching these videos. I dream of that style!!

  25. I'm also a potsie! Its awesome to see that there is a community of us somewhere in the world 😂 I was diagnosed as a child and have had to explain it to every doctor but one (my most recent cardiac specialist, also one nurse knew, that's it).

  26. I had 9, 10, even 12 day periods whe I had very bad PCOS. I have a lasagna of health problems myself now still, but thank god I have normal-ish periods now.

  27. So I was this video when it first came out and last week I was officially diagnosed with PoTS as well! My big trigger is food because of digestion causing all the blood to go to my stomach.
    I'm so thankful for your disability playlist because it's helped me bring things to attention to my doctor that I previously thought were from other disabilities I have, and also helped me cope with the list of ones I know about.

  28. I just got diagnosed with POTS after six months of constantly passing out, and it's something of a relief to see someone else who spends so much time on the floor. It's been hard to relearn how to live around it, so thank you for sharing and being so positive!

  29. So I've been sick with CFS for about five years, and done quite a bit of research into that. I've also known people with PoTS, but assumed it wasn't something I'd be dealing with because I knew vaguely that it was a cardio thing, and I thought my heart was fine.

    I got a couple of minutes into this video and went '……..oh' and googled PoTS symptoms. I found the site you later recommended and reading through the symptoms was like reading a call-out post written specifically for me. As in, things I'e suffered all my life. My Mum then got me to stand for ten minutes (a real issue given as it's late and I'm having a not-so-great CFS flare up at the moment) to test my heart rate and blood pressure as suggested by the site and the results were fairly consistent with what the diagnosis page says are required.

    I'm making an appointment with my GP this week. Thank you so much for the videos you make. I only found you today and I feel like they've already made a difference to me. I was having a hard time mentally and I feel a little less alone and a little more valid <3

    also girl your style is so fly colour me impressed dang haha

  30. I was diagnosed with POTS a few weeks ago, and it's quite likely that I have ME, too. What you said about "doing things left, right, and centre," is really good to hear. I'm a plumber, and naturally a do-er, and it's been really difficult coming to terms with how much I'm needing to rest lately, all I feel is guilt, but this video really helped. Thank you!

  31. I've been watching you for two years. I started watching when I started having symptoms, but the doctor couldn't/wouldn't figure it out. Two years, about 12 doctors later, and I just got diagnosed with POTS a few days ago. After pushing for every doctor to test for it, I finally got one who would order it.

    The point is, I stumbled across you when my life seemed like it couldn't get better and your videos have helped inspire me to keep going and staying positive, despite it only getting worse before it gets better. I know this must be common for you, but I just wanted to say thank you for being you and sharing it with us.

  32. I love the rug! I’m pretty sure my grandparents have the same one too. Also I have been experiencing really similar things and these have been helping! Thank you.

  33. Hi, my name is Natalie Tippetts and I also got diagnosed with POTS 2 weeks ago. I was wondering if you could tell me, in your opinion the worst part about having it and how you would get people to understand what you're going through. I am doing a project on POTS so it would be very helpful. Thank you.

  34. Watching this laying on my bedroom floor in pain while trying not to choke on my tea lol. I love watching your videos on my bad days because they make me so happy

  35. My BP loves to hang out around my ankles , the dr actually had me hop on the spot to find it one day 🙁 my heart never actually gets fast enough to diagnose pots , so they just say syncope 🙄. If it happens in public I just claim in conducting a "random gravity test " .

  36. So I’m wondering if anyone else with POTS has convulsive syncope? And also vomits after passing out? It’s horrible. Lol.

  37. There is a woman where I'm from who had pots. She did an operation in Spain putting pieces of rib in her neck to strengthen the spine and keep the brain from dropping

  38. I am a rare case… I have an Idiopathic Intracranial Hypotension and a CSF Leak trough my nose. I suffered badly for 5 years in bedrest. The deal is, I am just 21 now. I was a year free of symptoms, but I got them back. I hope it's not but a mere flu. I wish somebody had talk to me like you did in this video, you're a real treasure. BTW, I am not deaf, but I attended an otherwise all- deaf school here in Finland. Greetings<3

  39. I have 2 tips for POTS

    When you are taking your medication, say a random word, such as duck, pink, truck or knot. This way if you ask someone "Did I take my medication today?" They will reply withb" Yeah, you said XYZ"

    The next one is for blood pooling. It can be painful, so put the blood pressure cuff hound your leg and start it! Pressure helps! At least for me!

  40. I have fainted everyday for over a month and my doctor says it is just stress. Ive been laying down throughout the day to try and help.

  41. I absolutely love your mindset. You have such a happy and cheerful energy about you despite what you go thru. I see you as one of the strongest people of people. Keep up all the inspiring messages and stories and showing people a better way of dealing with whatever condition they're going thru. You're amazing

  42. Do u always pass out if u have pots? Or can u have pots without passing out my daughter has every thing u mentioned but doesn't pass out but dose feel very faint and dizzy or very light headed she's only 14 and really suffering from a very concerned mummy 🙁

  43. You are So very helpful!
    You are so beautiful, brilliant and wonderful to listen to!
    I have pots and other overlapping illnesses. I've been wondering if being a vampire is part of it all (LOL)…the light, ACTUALLY allergic to the sun…the tons of water…thermoderegulation!!!…lots of ice…needing 68°Fahrenheit or less to survive…not being able to eat any solid foods…can't sleep at night… Daytime makes me so so sleepy………
    Love You
    Thank You!!♡

  44. You could try depo provera to get rid of your period, I didn't have one all through uni because of it, bliss!

  45. I was just diagnosed with POTS today. So this is so incredibly informative i haven't fainted before thankfully. The dizziness is very real though for the longest time i thought it was just from my chiari… Nope definitely not that. Getting hit with a box truck and ending up with severe Occipital Neuritis did not help. We're all just messed up little potatoes trying to get through the day. Thank you for your wisdom.

  46. I just fainted today in public for the first time (I've been diagnosed for years but I'd been lucky enough and homeschooled enough for it to always be at home) in the middle of ROSS-woke up with a doctor ready to call an ambulance 😂 Long story short-I getchu

  47. I was just recently diagnosed with POTs whilst still in high school As well as being diagnosed with EDs a few years ago and it has been such a difficult time.
    But seeing people raise awareness of the unknown and I talked about condition makes me happier

  48. I know this is an older video, But I'm in the middle of being passed around to several doctors at the moment to find out why it is I become faint all the time (They don't know other than "oh ya the blood is not getting to your brain for some reason, might be your heart, come back in a month.") While feeling bad about not being more active and getting more done and the you're not alone fuzzy feelings are nice.

  49. I just took a job at a theme park and I’m having to remember that I have limits and I have to pace myself and rest when I can

  50. I take the pill like loestrin 20 daily that completely stops my periods. I wonder if that would be good for you?

  51. I also have POTS! I’m just 15 y/o and was diagnosed a couple of months ago along with Ehlers-Danlos Syndrome. I’ve been having fainting spells ever since I was 9. I used to be really active and danced ballet, and at least once a week I would have to cut class because I got extremely dizzy after being upright for a while. Now, my symptoms are the worst in the mornings. At school we have to do this lineup every morning and sing the national anthem, and last semester I fainted every day for a week because of it. I can’t do long lines at places like the airport and such because I’ll end up on the floor. Thank God that I now know when I’m about to faint so I can sit down on the floor before it happens

  52. Being a floor expert, do you have a favorite pillow type? Do you cycle through squishy gel honeycombs to down pillows? Would a shoe box sized bean bag work?

  53. Does hormonal birth control mess with you terribly? I have Mirena, and not menstruating has made my life *so much better*. I have connective tissue problems and dysautonomia as well. Once I'm certain I don't intend to have another child, I plan to get endometrial ablation to end the flow entirely.

  54. I dont think I have POTS but who knows, anyways I do quite frequently become extremely dizzy, go "blind" and get headaches when I stand up too fast. I've hit my head on a door frame before bc of it and have almost fallen over a few times.
    Usually happens when I'm a bit dehydrated. It's always different but I feel like I've subconsciously taught myself to stand up slowly and support myself when standing up.

  55. I’m 14 years old, i’ve been diagnosed with POTS and Narcolepsy. Your videos have helped me come to terms and be more informed on my illness and others!

  56. I checked my heart rate. I was 67 BPM while sitting and after standing for like five minutes I went up to 129 so I’m pretty sure I’m dying….

  57. I just wanted to come back here and say I first learned about pots from this video about a year ago and through denial to 'shit maybe I have this' to waiting for doctors to take me serious and then when they did waiting to get tested, I have my diagnosis now, as of last Thursday.

    Thank you so much for this video, I'm finally getting help for something I've been struggling with since my teens. I really couldn't have gotten to this point without you.

  58. I have Ehlers Danlos Syndrome (hypermobilty type) and POTS. I wasn’t diagnosed with anything until I was 37 yrs old, but I knew something was “off” since I was about 13.

  59. I had two weeks of something happening every single day. That is a bad thing. I kept telling myself “I just have to get through next Thursday and then I can sleep.” I didn’t make it. I ended up on the floor. I’m now sick and have spent the past two days in bed—right where I should have been all along.

    People always asked me why I sat on the floor so much. I used to laughingly say it was it was safer there because that way I didn’t have as far to fall. They thought I was joking. I wasn’t.

  60. Could you use a hormonal birth control method to eliminate your period? If you have no contraindications for using a pill you can just skip the placebo week. Or an IUD and depo provera injections can also stop menstruation. Love the channel

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