Independence // Chronic Illness Life [CC]

Independence // Chronic Illness Life [CC]


Oh my God, migraine I feel like I’m gonna vomit through my eyeballs This kind of pain, actually, it makes me think of, of course, it makes me think of Faith’s knife in season 3 that Buffy then takes and stabs Faith with Whatever, those guys need to just sit in a room really and work out their differences and by sit in a room I clearly mean ‘get it on’ Hello! So This video is a bit different… Is it? Because I feel horrible. I feel terrible. My head is killing me. See, I like to have a schedule. I release my videos two days a week except for Vlogmas, obviously, when it’ll be every single day. But I think it’s important to film even when I feel really rubbish because that’s life, right? The whole idea is that I show you my life as it really is, I want people to know what it’s like having having a disability… maybe I am gonna vomit from down here. I thought I was just going to vomit from the eyeball but… [to offscreen] Changed my mind! I would like the bowl! Thank you! Thank you. [offscreen whisper] you’re welcome! So, I thought I’d have a little sit down chat today. Little talk about… hilariously in most videos people seem to have tea and do the whole tea thing. I have a sick bucket because that’s my life. It’s OK, I will actually edit out any moment where I actually do vomit. Right. Independence is actually what I want to talk to you about today. I have been showing some more vlogs recently that are about my, kind of, “work life” what I do! I go off and I do videos for other people, TV presenting stuff, I do a bit of modelling, I give speeches, that type of thing. A friend of mine, who I’ve known for a really long time, since before I actually became “officially disabled”? said to me after seeing one of these videos, ‘you know that’s so amazing!’ and ‘maybe soon you’ll be able to go to London all by yourself and be independent’ and I was a bit like Mm no. Because that’s just not how it works, that’s not how my life’s going to work. I’m not going to “get better” it’s not like I have an illness that is going to get better and improve I have a disability that has symptoms and the symptoms change so, a bad day: I’m flat on my back in bed can’t lift my head, can’t move, can’t probably can’t stop vomiting, actually. So a good day: I can go out, I can do something, you know, get some work done, do a little edit. I had a great day the other day, actually, we did some editing in bed in the morning, then we went out to the park, we came home, I made dinner, we snuggled on the sofa Excellent, that is a good day. It’s a tiring day but it’s a really good day so that “good day” when I do things, I’m not doing them alone. So I don’t spend a lot of time in the house by myself because it’s not it’s not that safe, bit of a walking disaster zone If I’m left alone I tend to forget my medication even though I have alarms, the alarm goes off I switch the alarm off or I kind of feel sick so then I don’t eat anything, so then I spiral a bit, then I get a really bad blood sugar dip, and then my blood sugar dips too low for me to want to eat anything to properly look after myself so I get’s worse or I just probably injure myself a bit, really, knock into something fall over. So I’ve generally always got someone with me just in the house, they don’t need to be literally next to me, like, Clara’s here or, obviously, Claudia’s here, she lives here or, you know, there’s just someone else around but not ‘they have to be right here this very second’ and then, going out: so we went out to the park, so Claudia drove us to the park because I cannot yet drive, and we went round the park together, and if we stop off and we buy food we go into the shop together and she carries anything that’s heavy, and then we get you know, we pay and then the bags and she helps me pack because… look at these things do you think these can pack at speed? They can’t. And then we drive back home and I make dinner but she’s here, in the room checking I’m OK. You know as long as I’m not too tired and kind of mentally with it so I can use all my little tricks in the kitchen to make sure that I don’t come into contact with anything that’s too hot or spill stuff everywhere A lot of disability rhetoric is around being independent and “independence” is supposed to be this amazing thing that we are all supposed to want and I’m not saying I wouldn’t like to be independent I can’t imagine how amazing it must be when you want something to just get into your car and drive to that place and buy the thing and come back Like… [imitates explosion] I wish I could drive that would be fantastic. I need to pass my driving test need to do that, but even once I have I’m still not going to be able to drive alone, because driving obviously takes a lot of your concentration and energy, and so I will be using all this concentration and energy to get from point A to point B, and then I’ll be at point B and then I will, hopefully, go into the shop and buy the thing that I want – why is this all based around shopping?! I don’t know but it is! Capitalist society! I’ve got the thing and yay! But now I’m really tired so now what? How do I get back home… when I’m at the place and I used my energy to get to the place and to get the thing? I probably have less independence now than I did as a teenager. If we look at independence in terms of being physically able to do things, physically able to go from one place to another *alone* and I don’t know – manage yourself, look after yourself whilst alone? In that sense, I have less independence. However, what I would say that I have learnt is that the term “independent” and “independence” are very different when you have a disability. It takes on a whole new meaning. For me, I feel more independent when I’m in my wheelchair than when I’m on my feet because I can actually move at the pace of a normal human Yeah! Rather than the pace of a slug! A toddler slug! I get to chose where we go now! I might not be able to drive there but I get the choice! I get to boss my wife around! We go where I want to go. We buy what I want to buy. But I – the internet! Which is the most amazing thing ever because I can make my own content and I wish I could make more things! I wish I could write more, I wish I could make more videos at a much faster rate, wish I could – I’ve got all these thoughts and feelings and I want to get them out there and it’s so hard to do! I need to be OK with that because that is the way it is, it’s not actually going to change. I have this fantastic community, really, on the internet where you can talk to people! You guys! I can talk to you! And you can talk can talk to me! And we can have a conversation, and it’s just the two of us, and it doesn’t have to involve other people, I don’t have to be aided, necessarily to do it, and that’s independence. And I can order something from Amazon. If I am so… brainfoggy and just energy depleted, lying on the floor, can’t do anything, UGH! Take away! But while I’m never really going to be able to just take charge of my own physical wellbeing – doing stuff by myself, bringing myself back, being fine and happy with it – while that’s not reasonably going to happen for me, I need someone there, you know, if I’m off to buy clothes because the likelihood I’ll faint is 50/50! And I’d prefer to have someone there who’ll catch me when I fall, rather than just falling and some strangers going ‘Oh!’ Please don’t call an ambulance. Dear God! If I fall over somewhere, don’t call an ambulance because, although ambulance people are amazing and they have really good drugs, they then have to take you to A and E, and A and E is Hell. On. Earth. I have been there too many times. OK? Anything, anything to not go back. So, yeah! Although I’m never going to have that kind of physical ‘yeah, do what I want, go where I want!’ I still have the awesome independence of mind that is the internet. So that’s what this video is saying, in conclusion. Look at me Talking to you, rambling on, saying what I like. There you go. So there you go, I think that’s what independence is. Do you agree? Do you agree that that can be independence? Let me know. Share this video with your friends who may disagree with you or me. Or agree with both of us.


100 thoughts on “Independence // Chronic Illness Life [CC]

  1. Thank you for making these videos! I've only discovered the channel maybe 2 weeks ago, and I feel like I've learned a lot through your life experience. Hoping I won't come across as an arse when I meet those with disabilities, hearing loss etc – and perhaps be a little more mindful.

    I think the definition of 'independence' as 'go to London yourself ' falls way short of the mark. This would mean many 'couples' are not independent most of the time since they spend so much time together – inside and outside the home.

    I like your definition better!

  2. I think independence is having the knowledge that you can choose what you want/don't want, or what you want to do with yourself. You don't necessarily have to have the ability to do it yourself, but people are not all alone!
    Independence is definitely a state of mind.

  3. 3:20 –3:40 life every day when you take 10 pills and a shot every day. "I often forget to take my medicine… and then i spiral a bti" 😂😂
    Jessica is me on the daily.

  4. I can relate to this. I get chronic migraines and if I don’t catch it with a lot of ibuprofen in time, I’m out for the entire day, possible the day after. I can literally feel my heartbeat in my left eye, it’s awful. And if I eat? Pfft. Tastes like cardboard, comes up like it too. Keep strong ❤️😄

  5. I have my own sets of disability. I just wanna say that your outlook, and this video breaking down how you see independence as a disabled person was so beautiful. It made me tear up. I am really thankful for your content.

  6. Yes I agree that is independence! I salute and admire you jessica for being cheerful whatever happens to your life I like your attitude and personality so genuine 🙂 Thank you for your videos for sharing your life and disability experience with us..love from the Philippines, neighbor of Malaysia <3

  7. Thank you for showing your time with a migraine, I have chronic migraines so it’s kinda nice to see that I’m not alone with that

  8. I love this video. It really makes me appreciate how well my partner is and how independence can mean something totally different for everyone. Hope you made it through without vomiting! Xx

  9. I just want to say that watching your videos makes me feel like I’m not alone. I don’t have all of your disabilities, but I do have PoTS. Just knowing that someone understands what it’s like to have a limited about of energy or “spoons”, and that someone knows how hard it can be just to stand up for a while. You give me hope because you don’t let it bring you down and you keep going on. You are a real inspiration. Today was a low day for me, just getting up and walking around the house is hard. But on better days I can get out and walk around for a while. I am also lucky enough to have a beautiful woman in my life who loves and cares for me, just like you do. Keep doing what you do, again, you are such an inspiration.

  10. You don't have a medical bracelet ID system where you live? In the US medical bracelets can have instructions on how to care for you in an emergency situation along with your medicines, illnesses, emergency contacts, etc. I've even seen one with some sort of USB or chip that can be plugged into something to get the information off of it. I'm planning on getting one soon but I'm too picky and want a really cute one that can camouflage itself as regular jewelry.

  11. I discovered your channel recently and I must say that I really really love your content. You are so inspirational and I bet your videos are very helpful for people who also have disabilities. I am lucky enough to have none, but your honesty and great attitude has definitely made me understand a little more and get rid of any preconceptions that I unfortunately have had. I also love the videos you make together with your wife. And of course you are not only beautiful on the inside, you also look absolutely gorgeus! I wish you all the best <3

  12. for me the prime example of independence is being able to go to the dentist on my own. Along with my sight issues I suffer from bad anxiety and the dentist has always been SOOO scary to go to. Until recently I could not go on my own and now I can. I guess prime example of independence is being able to conquer your fears.

  13. As a person with CFS, malformed joints in my legs, IBS and have just learned that I will go deaf in at least one of my ears slowly over the next few years this channel is exactly what I need

  14. I am hard of hearing, which doesn't really take away any of my independence, but I do have a chronic disorder. Mostly, I live my life in what outwardly seems to be a typical manner, but there is definitely a list of things that I cannot do or cannot do on my own. I used to feel bad about it, but it doesn't bug me so much anymore. I do what I can, when I can. If there are days that I have to take a step back or I have to just press pause on my life, I'll do it because I know in the long run I have to do what's best for my body and the rest will follow.

  15. I love your videos so much 🙂 it is so nice to listen to your voice <3 i am so happy i found your channel 🙂 you are beautiful outside and inside!

  16. will you everdo a video on doctors/nurses. your story to getting diagnosed or ignorant medical staff comments or frustrations? :@)

  17. Have you watched the series Dollhouse? It is also made by Joss Whedon and also stars Eliza Dushku… I highly recommend it to any Buffy fans out there. Also Firefly.

  18. This is a concept I've personally struggled with a lot; it would be very very difficult for me to be "independant" due to my neurodivergency and my overall mental health, plus the fact that Icant and may never be able to drive for many reasons….. and especially during the year I was in hospitals and shelters, it was drilled into my head that i HAD to be "independant", I MUST be independant or else I'm useless, or a burden, or my life is meaningless, or even that I don't deserve to live.

    And that's a vile, terrible way to think of it. To think and even say out loud that people who require assistence and can't be ""independant" or useless or worth less than other people. People would often tell me that I must not WANT to be independant, that I was faking because I must want to be coddled and I'm selfish and spoiled, but I do WANT to be indepedant, relying on others has brought me immense pain in the past, but that's just…. not how life works sometimes, yknow? And I deserve to live.

  19. I don't really think people should be shamed for being dependant on people. Almost everyone in this world is dependant on someone for something, whether that be dependant on friends for social life, partners for emotional support, parents for financial support. No one is independent truly. I understand that what disabled people want is more of a tangible independence that has more to do with living without a carer, but different people need different things they are dependant on. In short, I think you are completely right when it comes to the fact that independence means different things to different people. I myself have no disabilities, but despite being an adult, I have to live with my parents, because I don't have enough money, yet, to live on my own.

  20. seeing your videos has become a big source of strength for me, and i think this one resonates with me the most. im a disabled teenager living with a family who are not only all able-bodied, but who are also all in denial that im even disabled to begin with. it makes such a huge difference to see someone who understands where i am in my life and shows me that i can move forward.

  21. I totally get that independence thing…like I'm going to be living on my own soon but my parents are 15 minutes away in case anything happened and mom's cool splitting the driivng or driving me on bad days. My knees give out sometimes and it's a total pain…plus I have to have everything quiet and lkw stress especially in the morning's when I'm super nauseous.

  22. And you still manage to look so gorgeous. You are such a breath of fresh air. Just subbed recently but you already amaze me so much.

  23. New to this channel and I’m impressed. If you’ve never experienced chronic illness and/or pain, then to watch this content offers some desperately needed education on what that is like. You do it with humor, grace, and irrepressible charm.

    Also, you have a wife, a home, and a platform that you use to educate and inspire. If that’s not independence/control over your own destiny, then I don’t know what is!

    Cheers!

  24. I think I will transform my Lace cuff bracelet to read: Do Not phone Ambulance (as it runs only the Hwy. to Hell). I have POTS and EDs. Helpful are, a pillow (neck support), Spring water, and Air (dispersal of any crowd, and not letting anyone step on me or attempt mouth to mouth for f's sake). I must remain horizontal for a time, this is [my] normal. Okay, maybe not all the parentheses. Does anyone else want one?

  25. this is so affirming. i've got some kind of chronic fatigue equivalent (I'm so confused what's going on but I can't walk up stairs easy and feel really sick in humidity, am temperature sensitive, hypersomnic etc and my doctor doesn't seem to understand how much it impacts me) and mentally ill w agoraphobic episodes and delusions and Thought Disorder

    and I hardly ever leave my home except to get food and go to the movies once in a while. i feel so alone and have been accused of all sorts of ableist classist stuff because I can't work, had to drop out of uni, and now live on social assistance. (the kind for non disabled people that's so little and intended to be temporary, so they make it difficult for anyone to keep on it let alone have a basic life quality on it)

    it makes me feel so much relief to hear other people that do similar levels of activity. it's so hard to feel like a person somedays but this helps me so much

  26. This made me feel so much better about things. I've been having a lot of trouble facing the increasing difficulties and restrictions that come with aging and my conditions, the need to be accompanied everywhere (even just for groceries! Ugh, it's just down the road!!) And all the damage that came from before I was treated, and reconciling that with the idea of "independence" people keep pushing at me.

    Thinking about it in the terms of making decisions and creating the things I want to… That makes it easier. Thank you

  27. This is hilarious. I have migraines as well. Both the traditional aura migraine and cluster headaches. With the "common" migraines where I dont feel so paralysed by the pain that I think of ripping out my eye ball or jump out the window, I usually get nauseous even before the headache starts when there's only just light and sound sensitivity, purple dots all over my vision, the feeling of being on a boat while I lay down etc. And when the headache hits it will keep getting worse every time I throw up.

  28. Oh my god I always have a throw-up bucket near me too… one by my bed and one by my computer. Once my mother went to the hospital for something temporary, and she came back with some of those little blue “emesis bags” and gave them to me as a gift, and it was so surreal because I was genuinely happy like I had gotten something really special! I hate vomiting but cleaning it up is half the suck for me. 😖 (BTW this look is incredible. 🤩)

  29. This was very helpful because I got rejected by a guy who said I wasn't independent enough to be a good wife and who said I was too helpless because I can't drive and I'm chronically ill. It's nice to know I'm not alone and that there are people who will look past that and value you for who you are and not based on what you can or cannot do.

  30. When I was a teenager, I definitely related to this. From when I was 6 weeks till I was 16 years old, I had a breathing tube; and the whole independence didn't the textbook definition. I could do everything myself but I still needed a nurse to take care of any phlegm that needed to be cleared out. Everyone's independence is different, especially when disabilities and chronic illness is a part of their life. Also, thank you for having a pain day video.

  31. I relate so much! I have Ehlers Danlos Syndrome (hypermobility /frequent dislocations), POTS, Narcolepsy with cataplexy (literally any time I am startled, pain spikes, POTS kicks in or high emotion or lack of sleep TRIGGERS IMMEDIATE DROP ATTACKS OF PARALYSIS) …long story short, I cannot be alone either.
    You are wonderful. I love your videos. I love your charm. You've got me inspired to start my own YouTube because you have changed my recent life, and keep me sane knowing I'm not alone in the medical calamity life. -Katlyn Katastrophe

  32. Even a share could help so much 💖 if anyone takes the time to donate or share or even just read my story to raise awareness for chronic illness it would mean so much to me!! https://www.gofundme.com/Cass371

  33. Jessica… THANK YOU… i have recently found your channel (you video about dating someone with a disability popped up one day, and my partner is deaf so I was curious and instantly fell in love with you and your wife) but then when i found your vlogs discussing your other disabilities to some extent i felt so connected to what you were saying. Ive fought illnesses my entire life but recently have been struggling with a proper diagnosis and when you talk about how it feels your body is constantly telling you something is wrong, but it doesnt know what… I GET IT! and the chronic fatigue sounds very familiar as well.. but i have never connected to anything more than your comments here about fainting in public and not wanting people to call the ambulance (even though theyve got the good stuff) it being the hospital (US here) that is hell on earth … i cried i was laughing so hard because I GET IT!! the number of times ive passed out in public and woken up in the ambulance just to say "oh crap!" Thank you for your vlogs… during a time where i feel like everyone thinks im lying or crazy (except my partner.. she sees its real) … you make me feel less alone and less crazy!!

  34. I LOVE THIS VIDEO!!! Growing up with numerous mental disorders/disabilities (autism, adhd, multiple mental illnesses), "independent living" was a huge thing that was focused on with my treatments. However, my parents, case workers, and doctors were so incredibly focused on getting me to what THEY felt would help make me reach independence in adulthood (I was a child-teenager for most of this. I'm 27 now.).
    Using the driving example that you did, I never wanted to drive but in the States (where I live), driving is the primary transportation people use. With my ADHD causing attention difficulties, my Autism causing navigational difficulties, and my mental illnesses that cause panic attacks, dissociation and paranoia (among other things), I didn't feel safe driving; I've expressed that the idea of it terrified me from age 8 or so until today. But when I was 17 and wanted to learn public transportation routes and proper usage/alternate forms of getting around, I had to get my license no matter what I said/how I felt about it because, "you'll be more independent with a car."
    Well, I have my license and a car, living out of my parents house too (yay for that though. ^_^), I feel far more isolated and dependent than when I was in college with no car on campus, using buses, trains, and walking.
    With my Autism too (speaking only on how my autism acts), if I just start using the buses in a place I've driven in primarily previously it will leave me extremely confused with my daily tasks and how to approach them. I like to describe my Autism as if/then statements in computer programming – change a variable (the car in this case), my processing of how to respond to, react to, and complete a given task will essentially shut down entirely.

    Things like that, and an entire range of how disabled people of varying types in connection with independence, is why I LOVE that you spoke about this. Independence is simply doing what you have to do to function in society. Do you need another willing person there to help, like this lovely youtuber? Still counts as independent. Do you need to do things more slowly than the average? That's fine. Do things atypically? Also fine. Etc….
    As long as you're trying and doing what needs to be done, then you may have reach "INDEPENDENT" status.
    Even if you can't reach you're personal independence ideals, or your families independence ideals, just try to be a good person and have some fun. Try to just make the best of a difficult situation. Easier said than done sometimes, but where's the harm in at least trying? ^_^

  35. I just found your channel this week and I just adore you and appreciate all of your content for so many reasons. ❤

  36. Jessica Kellgren-Fozard a tip to not forget to take your meds after the alarm goes off is to either not shut off the alarm until you’ve actually taken the pills (which can be rather irritating) or hit snooze & then after you’ve taken the pills turn off the alarm. I love watching your videos!

  37. Omg I'm the same as you with medication! Set my alarm, it goes off every day at the same time. If I don't go that second and take my meds I forget. Then it's hours later when I'm in loads of pain I realise I've forgotten! I don't eat sometimes too (It goes in phases), and I know I've wrecked my metabolism! My blood sugar levels must be WAY off sometimes!
    Loving your channel!

  38. I've been watching loads of your videos today (I'm also disabled) and I now find out you're a Buffy fan too? YAY!

  39. I need to stop watching your videos because it's exposing my health privileges. For example, I have been constipated for two days and the medicine is giving me mild cramps (and not working) and I'm fully convinced that I'll never poop again and will slowly die of sepsis. Instead of going into a pleasant spiral and wallowing in lots of fun self-pity, I'm watching this and feeling a bit stupid.

  40. “I feel like I’m gonna vomit through my eyeballs” literally I’ve never heard a migraine put in better words

  41. For me being independent would mean living by my own and I feel so bad to live with my parents but I can't do otherwise or I would die…

  42. I know it is been quite a while, but I do wonder what is your experience with rideshare services such as Uber and Lyft? Do you use them often, and do they help you in any significant way?

  43. Every video with some sign language of any kind and gestures clear facial expressions helps me out . I lost my first language about 2 days ago and find English rather challenging since then too. I’ve been denied using my most natural every day language , Swedish Sign Language, and been in constant stress due to a really bad situation for way top long. So first my memory and learing abilities went oit the window, then finally more of my cognitive abilities broke. I used to be able to follow everything you said nefore, but I can’t anymore. I still kind of want to try to watch your vlogg anyway because your personality and the topics are engaging in an easy access way. Just wish er both could speak the same sign language, and be fluent. And that I could respond in sign language instead of all theae letters put toghether painstakingly. Writing and Reading is so hard now

  44. Independency is a completely different thing while disabled and sick. People don’t want to give me what I need with the excuse/misguided Notion that getting what I need Will make me passive and lazy. So here I am, confoned to my bed all day and night, without even basis needs met, completely passive against my Will. With personal assistance 24/7, I”d be able to have a life. Get health care, do occatiomal errands. have my kid live at home again. Get a hair cut. Visit my piercing studio, go mend my glasses, for crying out loud. Even vist my kotchen, as a first stop…

  45. I never thought about the fact driving takes mental energy. Oh my god this explains so much of why I am beyond exhausted from coming back to college. Bless you Jessica for helping me realize things with my health.

  46. Oh God I know this feel about "omg, it would be amazing to just drive somewhere and have the thing!" I can drive but don't have access to a car, and with my energy issues doing something like going to pick up loo roll or whatever is An Event. When I've seen friends just… go places, and it's no big deal, I'm like "whoaaaa."

  47. There are times when my head is so foggy and my legs don't work and I can't barely do things on my own, but I have a great support in my sister who would never make me feel like I'm a burden, also I love my bed

  48. Hi! Love your videos 🙂 Have a look at the Independent Living Mythbuster from the European Network on Independent Living: http://enil.eu/news/the-enil-myth-buster-now-available-in-6-languages/ independence =/= self-sufficiency, but choice and control over your life 🙂

  49. as my chronic illnesses/symptoms have progressed ive become a lot less physically independent and thats a huge issue for me BUT im glad i can find little things like opening juice boxes for myself instead of having to make someone pour me a glass.

  50. I absolutely understand my illnesses are chronic and progressive also. Hugs also I understand I can't drive either. If no one is here I'm stuck to bad. I totally get you I mean I too my mental thoughts sometimes are I want to get up take a shower, clean the floors and go to the store go shopping. " Reality" Get up lay on couch, grab ice pack, heating pad and drink. Watch YouTube. Try to not feel sorry for myself! Geez I've edited this like 4x but I swear our lives are similar. You made me laugh and cry! Finally feel like someone truly truly gets it. Ty so so much! BTY I just love you guys your amazing beautiful and lovely.

  51. What do you do when you vomit but are wearing makeup? I absolutely HATE the feeling of makeup on my skin when I’m puking. My eyes tend to water a lot and it makes me feel like I don’t know how to do makeup properly!

  52. I know you probably won't read this Jessica, but hopefully someone else will and will find it helpful.
    Apologies, it got a bit longer than I intended, and a bit tearful too.
    I am what's considered "independent" by lots of people, but I feel less independent than you. Sounds funky I know, let me explain. You get to choose what to spend your energy on. Because there are other people there to help when you're having a bad day the daily tasks don't necessarily pile up, whereas if I don't clean it or launder it or cook it, it's not gonna happen for the most part (though hubby obviously does what he can.) If my body says no to something I frequently have to force myself to do it anyways which leads to me having very very few good days and way more bad ones than I'd otherwise have. Having someone like Clara in my life would allow me to do the things I want to do, like putting on makeup and doing my hair daily or writing or spending time with friends (heck I'd be happy to have friends at this point bc I never get to go out and meet people so kinda impossible to make friends that aren't people who are being paid to put up with me, doctors & nurses & employees of my kids school, who I only see while they're working) or the thing I most miss being active politically or socially in trying to make the world a better place! Right now that's my biggest dream in life, to get to a place financially where I can hire help. Realistically it's not going to happen, but it might and I will keep trying to make it to that day because honestly if I didn't have that to look forward to I don't know that I'd still be here to type this little rant.
    Thank you if you read to the end, yes I'm crying but it's okay I don't have on any mascara to run……

  53. This is really brave of you, filming when you don't feel well. Thanks for letting us in and educating us!👍💞 I suffer from mental disability and you channel inspires me and motivates me. Go Jessica💃

  54. “I feel like I’m going to vomit through my eyeballs”, that’s a perfect explanation for what I feel sometimes.

  55. Ohhh I’m 31 and I day dream about driving! How glorious it must be to just want or need something, and not make a huge production about it! #thanksbody

  56. Thank you. I love your honesty while mixed with your witty sense of humour. Having a chronic illness is so hard for some people to understand, but you explain it so perfectly. We have to take on things day to day, and meet ourselves where we are at that day.

  57. Im actully so brainfoged right now that i cant say what i want. so i will just say thank. i loved your video… well mostly to listen to what you said… the light was to bright for my headace 🙁 but tnank you <3

  58. This video helped me understand something other than what you pointed out. It made me realize that I've been so worried about my future independence because right now I live with my family and they AREN'T DEPENDABLE. By the point that whatever mysterious illness I have might get severe enough that I can't leave the house and do things there's hope that I'll be living with people I can trust. Maybe it wouldn't be so bad to be dependant if by the time it happens I have the same kind of people in my life that you do.

  59. I faint a lot too and I have a medical I’d on my phone and Apple watch to not call an ambulance unless I’m bleeding

  60. With a migraine, if you feel it comming or rather, see it comming because of the weird eye thing before they actually start, take 2 paracetamol tablets and just calm down a bit, pace yourself aka lay down xD.

    It works for me,…..but do consult you GP before taking my advice

    Anyway –

    Great video again Jessica 👍-up.

  61. Oh Jessica, you always seem to know what I need to hear!
    Having invisible illnesses and therefore "passing" as able-bodied has 100% skewed my perception, and expectations of my own independence.
    Thank you for pointing out that because we are different, our independence is necessarily different too.
    <3<3<3

  62. I have had a Pineal brain tumor with chronic pain disorder for 6 years and Lupus for 4, not to mention all of the fun little side issues that like to attack on the two days a month when I am in remission. It's like. "Oh you thought you were going to have a good day? Nope you're going to projectile vomit with a migraine."
    My independence came while they were preparing to shoot a lser through my brain and into my tumor. Let me preface by saying that I had already had it with the other patients being hugged and encouraged by their significant others. It was a year into my tumor, by this point my fiance and friends had split. Dealing with MY condition was too stressful and "difficult to witness". I want to add something for anyone who does not have a chronic disease. The worst and most evil thing that you can do for a person is to give them hope and then take it away. Don't say that you "aren't going anywhere" and "we will tackle this together" if you have any feelings to the contrary.
    So there I lay, having an "inside cry" when I asked myself "what have you always wanted to accomplish?" "I mean we have zero going on and the days are going to begin and end one way or another." It was in that moment that I decided to get my degree in Psychology. This was in September (2 days before my 38th birthday). I began college the next spring and will be graduating in December with my Bachelor of Science in Psychology. It took me a bit longer than most, but damnit, I did it!
    I still have no friends or a significant other, but with independence (and studying psychology) came the realization that those other people sucked (that's a technical psychological term). Having a significant other would be amazing, but it is not something I actively seek. My 2 boys (my youngest Weiland 7 is in my avatar) and their incouragement and especially hugs are I need at the moment.

  63. Thank you for your videos. They are thoughtful and inspiring. Moreover, YOU are inspiring. Thank you for being you and sharing your experiences with us.

  64. Wonderful video! Thank you for making and sharing. I appreciate how confident you seem about using the help available to you and pacing and listening to your body. I struggle to do that while feeling confident. I’d never look badly at anyone getting the things I need, but I tend to judge myself too harshly and worry too much what others think. Because of that, I often don’t leave the house and then feel worse because I wanted to accomplish something outside. I love that you are so well groomed too, I often feel like I’m not worth that, because I can’t contribute as much or in the same ways as most others… so it’s very inspiring to see and hear you talk. Thank you. Very best wishes.

  65. This is a pretty relatable video for me. I have lived alone for nearly 4 years and I have barely left the house in that time. This year I decided to learn to drive.
    I started a few weeks ago and I am going to get a mobility car. Independence is objective to the individual. Going to Asda by myself is going to be a monumental feat and I can’t wait for it. Wish me luck that I actually pass my test soon

  66. So I am chronically Ill but undiagnosed. Doctors basically have told me that there is nothing wrong with me besides all the symptoms. I live alone, and work full time. Some days I am a fully functional, and my only symptoms are a migraine, and some fatigue and weakness. Other days I'm completely bed ridden having up to 10 seizures in a day and all the fun symptoms that go with that. I was wondering if anyone else has similar experiences when it comes to health swings like that, doctors not believing you and how yall deal with it?

  67. I had a friend with severe epilepsy that was undiagnosed until she was 16. She had to wear a bracelet that told people not to call an ambulance if she had a seizure because, in America, that could mean a $500-$1000 ride to the hospital just for her to eventually come out of the seizure and be able to get someone to take her home. She had to inform store managers of this a lot because, if they didn't know she was going to be fine so long as she didn't hit her head, it was policy for them to call 911.

  68. I haven't thought about how the definition of independence changes with age and ability in a long time. Man, I remember not being able to drive, and when my medications made me so foggy I couldn't even walk anywhere. The way it changes is fascinating to think about

  69. Have you though about getting a smart watch? That way your alarm is attached to you and if you lose your phone you can ring it.

  70. Thank you for this video! I'm in the middle of reducing my "independence," like getting help with shopping and stopping driving. These decisions allow me to work about half time, something I was struggling with when I was trying to do everything myself. People around me keep expressing sadness on my behalf that I'm "giving up my independence." I feel like I'm gaining independence by earning my own money! You've helped me feel better about my transition to less (more) independence. Thanks again!!

  71. For me “independence” means being able to go to the chemist on my scooter on my own. Granted the chemist is only round the corner!

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