Living with Hypermobile Ehlers Danlos Syndrome + Our Mobility Aids ft. Martina

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  • Опубліковано 26 гру 2024

КОМЕНТАРІ • 667

  • @eatyourkimchi
    @eatyourkimchi 4 роки тому +550

    Heck yes! It took us all summer and nearly all winter but we finally posted our videos up...IN UNION!!! :)

    • @AnnikaVictoria24
      @AnnikaVictoria24  4 роки тому +42

      Well, that's basically a month when you run on spoonie-time, right? So YEAH! WE DID IT! 🤜🤛

    • @zegobou
      @zegobou 4 роки тому +5

      Did you film this in Japan?

    • @AnnikaVictoria24
      @AnnikaVictoria24  4 роки тому +15

      @@zegobou yeah :) it's at their house, we filmed back in May 2019 when I was living in Tokyo for 3 months:)

    • @cherade99
      @cherade99 4 роки тому +2

      I have along list of chronic illnesses and disabilities, some from birth and some acquired. Neurological, psychological, emotional and physiological, yay me! Being immuno-compromised at the moment here in Scotland means never going outside, as well as my husband and son having to be super careful about their hand hygiene. It's not a fun time.

    • @mygirlcheech85
      @mygirlcheech85 4 роки тому +1

      Aweee i love looking AT BUG'S OUTSIDE

  • @rayanagi
    @rayanagi 4 роки тому +737

    I hope mobility aid companies take note. Even if you are "older" there is no reason why your cane, frame, walker, rollator or chair can't be pretty or fun. Also, a few more youthful and fun models for the ads would be nice too. 😊

    • @michimelody4036
      @michimelody4036 4 роки тому +11

      Walgreens actually has some really cute canes. Not sure you have them in your country but I saw one that was black and had really pretty silver spirals going down it had the foam like hook handle. They don't have just plain canes in there. They also have different handle grips. They are listed I think as fashion canes lol. I worked there for 5 years. Haven't been an employee for 10 but still shop there. They have an online shop though.

    • @DieAlteistwiederda
      @DieAlteistwiederda 4 роки тому +12

      I talked about that with a couple of people now and nobody really gets why all aids have to be beige, boring silver and sometimes black.
      I will probably either need a cane or walker in the future and I already know that I want a bright green metallic paint job because that's just my favorite color.

    • @ladyxanthar8747
      @ladyxanthar8747 4 роки тому +6

      I think the problem is the saleability. For the same reason most cars are boring colours.

    • @ratticus
      @ratticus 4 роки тому +3

      My canes are adjusutable black x 2, and polished wood and brass. I love the last one of them most, and it's the least practical one so sees the least use :(

    • @joannetiffany8047
      @joannetiffany8047 4 роки тому +3

      I wish they would just create custom made aids. Everyone is unique and has there own likes. Also though haven't people noticed the stuff people need for a disability, illness or rehabilitation is always 10x expensive than the normal stuff.

  • @RamblingofaBabyDino
    @RamblingofaBabyDino 4 роки тому +769

    One day a lady says to me "What did you do?!" In the pharmacy like just assuming that if I have a condition and I'm young that it must be my fault that I caused an injury. I was so tired and sad that day, I just screamed back at her "I HAVE A DISEASE!" And she just stood there with her mouth open (along with everyone else). I don't know, somedays I just can't deal with people.

    • @MirageEspejismo
      @MirageEspejismo 4 роки тому +35

      #relatable

    • @xovaleriaff
      @xovaleriaff 4 роки тому +27

      omg so sorry that happened to you, that makes me so sad that people instantly jump to judge. But you're so strong, and there will always be more people who support you

    • @yopi_yopi
      @yopi_yopi 4 роки тому +36

      Yup same, they think I was a wild younging who broke a leg but no, I'm a peaceful person who feels like I'm 70 because of chronic illnesses. People are the ones in denial.

    • @DayanaraDays
      @DayanaraDays 4 роки тому +8

      Humans are garbage creatures.

    • @katyb2793
      @katyb2793 4 роки тому +11

      aww.. I broke my a few years ago and ppl said that. and was like, why would I deliberately hurt myself? this isn't fun.
      how much worse when it's a chronic condition..

  • @korynnininm
    @korynnininm 4 роки тому +97

    I'm 19 and I have early arthritis and it's always so fun to hear "your too young for that!" WHY THANK YOU YOU HAVE CURED ME MY BONES NO LONGER HATE ME

    • @emjenkins464
      @emjenkins464 4 роки тому +7

      Same. I'm 17 and actually had arthritis confirmed on my 17th birthday after months of "it's just vitamin D deficiency and tenditis from exams". I'm on biologics now, but as they're immunosuppressive I'm having to prepare to self isolate if UK schools don't close

    • @korynnininm
      @korynnininm 4 роки тому +4

      I was on stuff for it (my ADHD ass can't remember) but I don't have health insurance anymore so I just take a lot of ibuprofen and Tylenol

    • @VampyricDeth
      @VampyricDeth 4 роки тому +4

      Fuck I hate it when people say that. 🙄🙄🙄

    • @broganmckoko
      @broganmckoko 3 роки тому +5

      I've had Juvenile Rheumatoid Arthritis since I was 2. Yes 2. That's over 40 years now. Back in the 70s they didn't have very many Medical Treatments for children so I ended up with a lot of extreme joint contractures and joint damage. I remain independent only out of sheer stubbornness. And yeah I heard the " you're too old for that" all my life. My answer is I was the perfect age because I was too young to become cynical, frightens or bitter. Instead I embraced it with creativity and determination. I end up teaching people nothing is impossible. Some things just take longer or require a different route.

    • @unetherized
      @unetherized 6 місяців тому

      It sure does hurt somehow when people say "but you're so young! You're too young for this!" I know they're trying to be supportive (?) but it really wakes up the self pity gremlins. Yes, this is hard. Being reminded by people who are sorry for me doesn't help. :/

  • @MocknozzieRiver
    @MocknozzieRiver 4 роки тому +94

    I feel like as a person without any disabilities, watching these videos is good for me because now I see someone in a wheelchair or using some other aid, and I literally think nothing of it anymore. I mean, I notice it, of course, but I don't wonder what the reason is or anything at all.

  • @nikkigriffin6441
    @nikkigriffin6441 4 роки тому +326

    In case anyone was totally confused when she said “who has the spoons for that?”. She referencing the spoon theory. The spoon theory is a way to illustrate the reality of living with chronic fatigue. It’s more a thought experiment or an analogy. I suggest you google it cause I could never do it justice. I do recommend Jessica’s video where she further illustrates by playing the sims in conjunction.

    • @8jerasikapark8
      @8jerasikapark8 4 роки тому

      Jessica who?

    • @firegodessreiko
      @firegodessreiko 4 роки тому +12

      It's actually not that great an analogy either as it gives people without chronic illness that 'spoons' can be stored up as extra or that you can somehow obtain more 'spoons' on any given day when this is not the case. I've read a few better ones, but bottom line is, you really don't have to make excuses or justify yourself to anyone. No means no and if you don't feel up for something despite your best efforts, that needs to be okay. Surround yourself with folks that understand that, and learn not to take it too personally with strangers that don't.

    • @nikkigriffin6441
      @nikkigriffin6441 4 роки тому +15

      That One Lady Jessica Kellgren-Fozard.

    • @cherade99
      @cherade99 4 роки тому +2

      @@firegodessreiko Spoons can be saved up to a small extent for some of us. It entirely depends of the condition or the person.

  • @audreylandreville6785
    @audreylandreville6785 4 роки тому +216

    That "build a ladder" thing is really great, and it's nice to see I'm not the only one to see it that way. Honestly, it's kind of the mindset I try to be in when I'm in the darkest days of my depression. Like, good job, you took a shower ! You got out of bed ! You went out, even for five minutes ! All the little accomplishements matter.

  • @Taradoxxi
    @Taradoxxi 4 роки тому +19

    As a fashion student with an invisible disability of my own, I have a serious interest in accessible design-I am so so excited you made this collaboration!

  • @mosswhimsy
    @mosswhimsy 4 роки тому +131

    Thanks for talking about this ladies. Because of stigma, my partner was so resistant to getting a cane to help him with his balance, but we found him a lovely second hand brass goose-headed cane and it completely changed his life. We call it 'the goose' and that helps a lot to not draw attention to it out in public, but also mentally creates a positive relationship with the use of his mobility aid. Plus it's super heckin rad.

    • @LoveKonkon
      @LoveKonkon 4 роки тому +2

      Omg i wouldve loved a goose cane but i didnt want to look 'stupid' or be judged since i was 21 at the time.

    • @firstcanonkill1767
      @firstcanonkill1767 4 роки тому +2

      @@LoveKonkon some goose canes are quite a 'cute' style, i say go for it ! im buying one with cats all over it do what you want, people don't often stare at your cane in fear of being impolite.

    • @SpyralStormTeacup
      @SpyralStormTeacup 11 місяців тому

      I have issues similar w/ mobility aids, but had this awesome, old dragon cane I found tossed in the trash that was so ornate and cool!! It was a little chipped, but it was lightweight, just the right height and the handle was the best fit I'd experienced PLUS the dragon's head. 🐲 Not only did it feel like my cane was my buddy, but I could travel with him on my back all around the city, which as a female too my dude friends would say it looked like I was traveling with a battle axe or ninja gear. I'd be like, "no that's my cane" but I am also a years-seasoned colorguard and can't deny my walking aid is totally like having my dragon guardian or familiar🐉🐲❤!

  • @N0pleaseN0
    @N0pleaseN0 4 роки тому +141

    When I'm using a wheelchair, sometimes I feel like an object...
    People will push me without asking if I'm in their way in a supermarket for example. They don't get why it so rude! Would you pick me up to move me if I was standing up? Would you touch my legs? Would you shove me if I had my cane instead of my wheelchair?
    Now I always put a jacket over the handles, or a bag and if people touch I turn around and ask if they're trying to steal.

    • @grosebud4721
      @grosebud4721 4 роки тому +12

      ダニエル遠藤乃惠海 that’s so insane! I would just walk around, go to a different aisle (social anxiety lol), or even just ask if you could move over a bit! It *would* make you feel like an object if people just moved you out of the way like that!

    • @endangeredidiot864
      @endangeredidiot864 4 роки тому +17

      Reading this bubbled some anger in me. Can only imagine your frustration.

    • @LoveShelbylee
      @LoveShelbylee 4 роки тому +12

      Strangers push your wheelchair?!?!??!?!?! Wtf is wrong with people! Let's disregard that we are taught as children not to put our hands on others, but do they not even think about the possibility of hurting you?????

    • @buzzlightyearandco
      @buzzlightyearandco 4 роки тому +4

      WTF I would never touch a stranger's wheelchair

    • @pyamol5052
      @pyamol5052 4 роки тому +2

      As a wheelie person myself, I love that idea and am going to start using it

  • @o0Avalon0o
    @o0Avalon0o 4 роки тому +159

    I have to start using a cane again & some gossipy acquaintances started grilling me. I was patient with the empty smiles until they started asking for my medications & their spelling, like it was some test.
    I made it clear that they can freely educate themselves online but I'd like to talk about other things since my condition can be depressing.
    It took repeating, but they got the message.

    • @SquidFiction
      @SquidFiction 4 роки тому +10

      o0Avalon0o god yeah, having people in your life who seem to only want to talk about your condition most of the time can be bloody exhausting!

    • @katyb2793
      @katyb2793 4 роки тому +21

      😲 um that's quite rude asking about your meds...

    • @AnnikaVictoria24
      @AnnikaVictoria24  4 роки тому +46

      What on earth.... how bloody intrusive can some people be?? I have a friend who says she's going to start asking people "when did you last have sex?" when they are intrusive like that, to make it clear how utterly rude they are being haha.

    • @queenVivi1
      @queenVivi1 4 роки тому +4

      You need to drop those people as a acquaintances. It’s okay to ask questions but not test someone to see if they’re lying about a disability or chronic illness.

    • @TheMazinoz
      @TheMazinoz 2 роки тому

      @@queenVivi1 Pretty much what I was going to say. But in this instance at this point in time I'd be very much inclined to tell them to "just f. k OFF!. "

  • @courtneyfurman7453
    @courtneyfurman7453 4 роки тому +81

    Me (disabled person) 2 seconds into build-a-ladder description: oh this is cheesy
    Me 2 more seconds in: sobbing like a baby (gets hit home so hard)
    ... def needed that reminder thanks!

  • @KrazyKirby15
    @KrazyKirby15 4 роки тому +210

    I wish the "Not all disabilities are visible" was a enamel pin! It really describes my fibromyalgia!

  • @SecretFiri
    @SecretFiri 4 роки тому +139

    And now, I want you two to have a collab with Jessica Kellgren-Fozard.

  • @hannahofhorror
    @hannahofhorror 4 роки тому +14

    Sickness behaviour is a real thing friends. If any of us had these issues acutely, our bodies would be begging us to stay in bed until we recovered. To me, it makes total sense that for a chronic condition, my body is still like “don’t get out of bed, don’t socialise, don’t shower”. Any day that I do any of those things is an achievement, and the days I don’t are totally justified.

  • @k.c.2213
    @k.c.2213 4 роки тому +50

    "If you don't smile, you cry."
    Wordddd 👏👏👏

  • @davidlove236
    @davidlove236 4 роки тому +84

    I totally smiled at the brain fog moment. I have them often enough that I don’t even try to explain them to people anymore. Thank you for the recap of “build a ladder”. This has been a great collab with you two! Thank you for doing it!

  • @yopi_yopi
    @yopi_yopi 4 роки тому +38

    It infuriates me how people STILL doubt me when using a cane. They bump into me, get pissy that I walk too slowly, look at me all the time from wearing dresses and having a cane for some reasons, tell me it's ok I'm young, make shocked faces when I stand up from a wheelchair in the airport as if I was miraculously cured or just lying. People are so noisy and misinformed. And even if they were just ignorant, they don't have to make this harder for us. Before i became disabled I never cared about disabled ppl, I didn't bother them nor even stared. It was common sense to me to not act condescending.

  • @chandlerwhitchurch9984
    @chandlerwhitchurch9984 4 роки тому +5

    Something I think is VERY IMPORTANT: Parents tell this kids not to stare. Children are conditioned to not look at people in wheelchairs or whatever. I personally believe this leads to adults who can’t look people with mobility aides in the eye. Like, if your kid is curious, just tell them that person needs the mobility aid to live their life. It’s normal for them and it’s normal for you

  • @legendarymudkip2096
    @legendarymudkip2096 4 роки тому +38

    As an able bodied human being, this is very informative and it makes me feel like i'm starting to grasp a better understanding of folks who are not like me

    • @AM-os4ty
      @AM-os4ty 4 роки тому

      Oh good grief.

  • @lavahead146
    @lavahead146 4 роки тому +30

    “If you don’t smile you cry” oooh my gosh you’re so right! I laugh and smile when it comes to talking with others about our symptoms, but then the others who don’t have these issues hear it get sad and are always about to cry thinking about what we deal with. But like. We handle it, and we can joke about it, so it’s okay :) Hooray for irregular poops!!

    • @AnnikaVictoria24
      @AnnikaVictoria24  4 роки тому +7

      Omg people getting upset about my life is such a pet peeve of mine haha. Not only do I then have to console them (which is ridiculous), im also like, my life is rad? I have so many good things going for me, why would people get sad for me? So relatable haha

  • @CallMeAlice818
    @CallMeAlice818 4 роки тому +18

    Annika is the reason I finally bought myself a cane the last time I threw out my back. I was afraid people would think I was faking if I didn't have to use it all the time. I also underestimated how supportive it could be, especially working retail six hours a day. It's my support baby. I also decorated it with stickers so people know it's mine.

  • @amberhines3979
    @amberhines3979 4 роки тому +3

    I wear a brace when I leave my house due to an injury. I decorate my brace and have considered starting a YT channel to show people how to decorate their mobility aids. I have anxiety issues so I hesitate to do it. But, I get asked all the time about my brace. People are like "What did you do to yourself?" When I explain, they're like "OH, they can't fix it?" Honestly, that really makes me feel like they're discounting the hard work I put in just to get as far as I've gotten. It's a permanent injury and I will wear my brace for the rest of my life, but I have come from a wheelchair to a leg brace and I taught myself to walk and drive again. I worked hard and put in a lot of effort and have had to come through the depression that comes with all of that. Thank you for bringing attention to the issues people with all kinds of mobility aids have :)

  • @AnnikaVictoria24
    @AnnikaVictoria24  2 роки тому +3

    Since we made this video, I have also been diagnosed with hypermobile Ehlers Danlos Syndrome. I live with both this and Takayasu's Arteritis, along with many of the more severe complications that come from having hypermobile Ehlers Danlos syndrome such as POTS, CCI, gastroparasis and MCAS. So this video has ended up showing how this condition can affect two people differently, and similarly as well, and demonstrating how vague the symptoms of hypermobile ehlers danlos syndrome can be that so that it can take /years/ to be diagnosed, even if you have someone else with hEDS sitting literally in front of you. See: "I also have digestive problems!" I say, not realising we have the same genetic disorder haha.

  • @Chibihugs
    @Chibihugs 4 роки тому +59

    Literally my two favorite babes with aids. You and Martina are absolutely gorgeous and inspiring. I feel like I have learned so much from you guys in being more aware of invisible illness and being kinder to everyone because we don't know one another's struggles. I also love "build a ladder", it is a great way to help yourself get in a better headspace to appreciate what you can do. Hugs to you lovely ladies.

  • @aliceannjo
    @aliceannjo 4 роки тому +2

    At 62 yrs old, I have learned a lot just from this video.. Hats off to you great ladies. I will never "judge " a person who LOOKS healthy, park in a handicap again. Thank you so much.

  • @dcinrb8538
    @dcinrb8538 4 роки тому +3

    When two of friends with disabilities, first met at my dorm room, they went into fangirl mode for each other's equipment. They barely acknowledged my going out for snacks. When I got back, they both asked why I never introduced them to each other. In my defense I replied, "You're Managerial Accounting and she's Financial Accounting". They laughed so long that our pizza got cold. They explained how one grew up as the "polio girl" and the other as the "cerebral palsy girl". I just hadn't thought about it... which made them joke about my prescription glasses.
    Until this video, I have to admit I just never thought of you as being disabled. Thank you for your taking the time to share your talents 😊

  • @ForUploadin
    @ForUploadin 4 роки тому +13

    In Japan, 20 year old Ototake was a game changer.
    He made mobility aids cool things to young generations over 20 year ago by mega hit contents on wheel chair life.
    His influential power made whole Japan the most wheel chair friendly society.

  • @tamaravancza7264
    @tamaravancza7264 4 роки тому +200

    Do any of you feel anxious when you have to use your aid after a longer period of time when you were OK? Are you scared of the "I thought you were OK now" kind of judgment? Sometimes I don't need my walking frame for months, and then I need it for a week, and I feel unentitled to it, as I was doing so well... Any advice regarding to that? Thank you for being such badass humans, I love your hash tags to bits!!!

    • @AnnikaVictoria24
      @AnnikaVictoria24  4 роки тому +74

      SO MUCH!!!!! I guess... it's all down to educating people on what CHRONIC illness means and some people are just never going to get that. The spoon theory has quite helped me explain my fluctuating energy levels to other people.

    • @eatyourkimchi
      @eatyourkimchi 4 роки тому +82

      I like to think of my mobility aids as different shoes or accessories. No one would question a different pair of earrings worn every month or new shoes, so I just tell myself, "this is my mobility aid accessory of the month~ knee braces are out...slings are in!" it might sound silly, but sometimes a pep talk to myself can increase my self confidence and help drown out those little voices that are so negative. This month, my ankle braces are totally back in style for the winter ;)

    • @tamaravancza7264
      @tamaravancza7264 4 роки тому +7

      Thank you for the tips!!

    • @biancasumfinrandom1653
      @biancasumfinrandom1653 4 роки тому +27

      I want to challenge your use of "I was doing so well". Needing an aid again isn't a failure on your part. So many of us have such deep insecurities around our illnesses, we are so worried other people think we are faking it, that we appear more severe or less severe than we are, that people might think we are incapable. And the way to overcome that is to change your mindset about it and yourself, as most of those fears are fears we have of ourselves. It's a hard journey but we all need to learn that we are worth taking care of and that these insecurities we have, most of them are complete lies.

    • @raraavis7782
      @raraavis7782 4 роки тому +15

      Tamara Váncza
      I don’t know, if this helps, but...maybe think of it like you think of your period. It’s just that damn time, where you need certain ‚aids‘ and maybe painkillers, even though you’re perfectly fine, the rest of the month.

  • @dracoharrylover1
    @dracoharrylover1 4 роки тому +4

    Does anyone else deal with people forgetting about your illness even after telling them? I have a chronic autoimmune condition that isn’t visible and I don’t like to talk about so when I do open up about it to someone they are surprised and seem to pity me some but eventually forget when I don’t visibly show my pain still. This past weekend my own father asked what my condition affects/does again... I was diagnosed at 16, it’s not new but the second you’re not complaining about it 24/7 cause you’re trying to be positive or the second you’re not in immense pain they forget and don’t seem to care! And don’t even get me started on the amount of “but you’re so young! You’re too young to be unhealthy!” Like oh I didn’t know! Let me just not be sick then!

    • @katyb2793
      @katyb2793 4 роки тому +2

      Madison all the time.
      some ppl never get it.
      I've got used to just telling people straight that I'm not doing so well when they ask. And that kind of keeps it fresh in their minds.
      With my family, I always tell them how my health is whether they want to hear it or not. otherwise they do forget and then they're too rough and hurt me, or expect me to do things I can't. Unfortunately I think this actually annoys people. But I would rather annoy them a bit, than have my health impacted. Because really, they shouldn't be annoyed.
      having said that, I think the majority of people mean well, theyre just caught up with their own lives, or haven't had health issues so they find it really hard to have any idea of what we might be going through.

  • @EvanAnnaNave
    @EvanAnnaNave 4 роки тому +47

    OMG Annika, you look so elegant sitting in that power chair 😍😍

  • @samwheat7400
    @samwheat7400 4 роки тому +5

    I just recently got a cane for my mobility, at 23, I have something that makes my muscles push my spinal vertebrae together and out of place, and on flare-up days I can barely move or sleep. My husband got me my first cane and when I think about it I cry because I couldn't go with him and he spent so much time picking out a nice color and fit because even though I won't need it every day, he's very aware that mobility aids can make someone self conscious. I'm excited to be able to function on pain-days now, and that I have someone in my life that is so understanding.

  • @CatGirl-ob4ki
    @CatGirl-ob4ki 4 роки тому +3

    My brother is blind and absolutely hates using his cane. I think it's because he's self-conscious. Hopefully these videos will help others own their aids with style and grace.

  • @MyAncientSpirit
    @MyAncientSpirit 4 роки тому +13

    Opened the UA-cam app, saw this video, clicked on it, then received the notification. Great job UA-cam. Pat on the back.

  • @Butterflier00
    @Butterflier00 4 роки тому +24

    name a more iconic collab. i'll wait....

  • @hollyrapose
    @hollyrapose 4 роки тому +3

    I'm an occupational therapist (who also has narcolepsy, chronic fatigue and wears a hearing aid) and this was very eye opening, I don't always think about these things!

  • @Catlady29
    @Catlady29 4 роки тому +3

    Aw I've missed Martina. I used to watch her videos when I was younger. My boyfriend always reminds me that I'm not my illness, but it's hard to be positive.

  • @BridieTurtle
    @BridieTurtle 4 роки тому +23

    Thank you for speaking about this. I really struggled when I started to use my wheelchair, i got a lot of stares and felt super uncomfortable, at the end of the day I would even snap at people to stop it. Now I've been using one for over a year and it changed my life, it's also an awesome dating tool to get rid of the scum. The discrimination is also ridiculous. What's really helped me is seeing other people being confident using their aids and looking/feeling sexy and cute.

    • @katyb2793
      @katyb2793 4 роки тому +1

      Bridie Turtle I sometimes need a wheelchair and the other day I was in the doctors office in one.
      I got SO MANY STARES.
      which is sad but normal.
      except this time I also had on a face mask.
      I've never seen grown men look so scared before. they were literally staring, fidgeting and pacing.
      I felt so bad coz I definitely didn't have a virus.. 😷

    • @BridieTurtle
      @BridieTurtle 4 роки тому +2

      @@katyb2793 hahah so true. People are freaking out cause immunodeficient people who usually wear masks are still wearing their masks. Yes it's to protect you grown men from my deadly insults about your stares.

    • @katyb2793
      @katyb2793 4 роки тому +1

      Bridie Turtle hahahaha! well I don't blame them in the current environment. I think everyone is starting to really freak out. it was so tempting to start fake coughing and sneezing everywhere. But I felt too bad to haha

  • @epowell4211
    @epowell4211 4 роки тому +2

    I became partially disabled when I was 30 and spent the next few years using wheelchairs, walkers, and crutches before I finally graduated to my lifelong friend, the cane. Not only was I young, but I was obese, so the looks of disgust I got from strangers were extreme and in your face. Husband got auto-decal stickers for my cane, and 20 yrs later, they are still stuck on well. The first 15 years, I was more concerned with how I looked and became an object of pity when I used mobility devices, and the last 15 years I've felt a stronger need to use them to justify my limitations and special needs. Both attitudes suck. I like the idea of ribbons and such on canes - I pictured a giant fairy wand lol. Hugs to you both, and all your viewers in the same boat

  • @olgachronics3273
    @olgachronics3273 4 роки тому +2

    What Martina said about people trying so hard to help is something I experience so much! When I'm using my mobility aid people are always offering me seats and asking me if I need to sit down, and it's so relentless that I'm like I've lived in this body a long time, I know if I need to sit and I have a functioning mouth so I'll ask when I need one. But I also agree that it often doesn't come from a bad place, just people who don't know much about invisible illnesses trying to help.

  • @peanutsandberrys
    @peanutsandberrys 4 роки тому +8

    I just realised, Annika, you would love the Tania Culotte sewing pattern by Megan Nielsen! They are culottes but because of some clever pleats they look exactly like a super cute circle skirt! Plus it's easy to sew because the instructions are so well written!

    • @TheMazinoz
      @TheMazinoz 2 роки тому

      You could possibly wear braces under them and not be noticed.

  • @alicesewnsew2413
    @alicesewnsew2413 4 роки тому +46

    Oh my god does anyone else get accused of ‘being on something’ I’m on a plethora of strong pain medication which in turn makes my pupils very tiny and although it’s very rare it’s happened. Now I panic about it all the time! Even though I know I’m taking the medication I need. That people are going to stare at me and think I’m into whatever. The stress. The STRESSSSSS.

    • @freakypetOZ
      @freakypetOZ 4 роки тому +8

      Yes!! I have been accused of being a druggie numerous times because of my health conditions - its gut wrenching to see that look 😫

    • @alicesewnsew2413
      @alicesewnsew2413 4 роки тому +5

      freakypetOZ I know!!! It’s the worst. I have a toddler too so I get even more freaked out that people think I’m a bad Mum.

    • @TheMazinoz
      @TheMazinoz 2 роки тому

      @@freakypetOZ Me too! Usually from doctors!!!

  • @slugssnailsandtales
    @slugssnailsandtales 4 роки тому +16

    I'm so grateful for this video- I have hEDS and I don't think my own doctor's understand it! I throw up a couple of times a month, have bowel/urinary issues and get light-headed! I didn't know this was something other people with hEDS experienced! I use walking sticks, a wheelchair and a mobility scooter depending on what kind of day it is for me. I hope to decorate my mobility scooter pink and yellow, and perhaps make a video of doing it up as there aren't many videos like this! Thank you xx

    • @AnnikaVictoria24
      @AnnikaVictoria24  4 роки тому +1

      I would LOVE to see that video! Please email me a link if you do! ❤

  • @maryannedelaney
    @maryannedelaney 4 роки тому +2

    I love the concept of build a ladder. It is also a great exercise for those struggling with depression.

  • @CarlosPenasGrl
    @CarlosPenasGrl 4 роки тому +16

    My favorite thing is knitting cane covers! I have a Hulk themed one and a Steven Universe themed one! Because I cosplay and feel iffy using mobility aids when I cosplay, I started knitting ones that matched different cosplays just in case I need to use it at a con

  • @sofiejegeras3179
    @sofiejegeras3179 4 роки тому +17

    Hi Annika! My kid is like you, that she uses a wheelchair sometimes and walk sometimes.
    She is 6 and I Love these tips. I Will save it for when she gets older. ♥️

  • @creativecheersoffashionlau7364
    @creativecheersoffashionlau7364 4 роки тому +36

    I have a chronic illness for22 years now and when i got sick I learned to build a ladder to try to get a little better and appreciate what I still COULD. After 22 years I have difficulties appreciating. I walk with a cane fir very small distances but usually use my mobility scooter. I don’t care people judging me, i am over that. I don’t like rompers because I have to pee very often and hate taking off everything. But what I noticed sometimes I wear heels( not stilettos but wedges of higher block heels) and walk with a cane. Then people are STARING!! How does she walk in heels as she can not walk?? But I CAN walk but just very small distances and heels aren’t a problem for me. Has nothing to do with my illness

    • @o0Avalon0o
      @o0Avalon0o 4 роки тому +5

      Wedges are so much more stable than even the tiniest heels I've tried, so I'm with you there. I love them, they're not practical everytime, but that doesn't give strange people free reign to be judgy. I'm glad most people are understanding but the jerks really know how to stand out.

    • @creativecheersoffashionlau7364
      @creativecheersoffashionlau7364 4 роки тому

      desi you are totally right! Everything is an accomplishment. But when you have the illness for many many years I feel it gets mire difficult to appreciate what you CAN. At least for me. I want MORE after 22 years. And get so annoyed when healthy people start complaining..... must be the frustration....

  • @tiredtransman
    @tiredtransman 4 роки тому +1

    I was just diagnosed with degenerative disc disease and degenerative arthritis and it's been really hard, as a 25 year old to come to terms with actually being disabled and learning to change the way I live my life as my condition gets worse (and trying to slow that as much as possible) I have been watching both you and Martina for years and, honestly, it's really nice to have videos like this and the supportive, positive things that you guys put out all the time. Thank you both for existing and making content.

  • @theflapperbassist1361
    @theflapperbassist1361 4 роки тому +2

    My heart feels so full and happy that you two got to meet and collab!

  • @skateabella
    @skateabella 4 роки тому +3

    I have hEDS and just started using a wheelchair and I’ve been needing a video like this!! 💕

  • @Kornkitt3n
    @Kornkitt3n Рік тому +1

    i got diagnosed with inflammatory arthritis at 18 a couple months ago, suspected rheumatoid arthritis. ive had to drop my studies while i trial new medications and go through lots of tests. i use compression sleeves on my knees and ankles, also compression gloves for when my hands get very swollen. i still haven't accepted that it's arthritis causing me pain, but then i remember that the pain was there all along, just with no name. im happy to have a diagnosis but i do often have to educate people on how there's different types of arthritis. mine effects my immune system and makes me susceptible to illness and infection, because my body is too busy attacking my joints. also my medication works by suppressing my immune system, so anything from a small bruise to an infection, takes a long time to come back from

  • @wolfietaurus
    @wolfietaurus 4 роки тому +15

    "If you dont smile you cry"
    I need that on a hoodie

  • @walkingjello
    @walkingjello 4 роки тому +2

    Its so amazing to hear people with EDS because of the feeling of solidarity! You guys are the best and make me at least feel less alone

  • @liuqmno3421
    @liuqmno3421 4 роки тому +51

    Wow, funny how most of these problems have to do with other people not respecting/understanding disabilities etc

    • @firegodessreiko
      @firegodessreiko 4 роки тому +3

      It's hard for anyone to understand what they have not experienced themselves. The best way to change their minds and inform them is to be calm and patient and hope that it gets through somehow. It sucks and it's frustrating, but your worth isn't based in the opinions of others anyway...

  • @MirageEspejismo
    @MirageEspejismo 4 роки тому +12

    @Annika, the Queen's wave was everything ☺️💕😉
    I can totally appreciate where you girls are coming. I also get judged as "young & healthy" from the outside. Even some doctors have done that to me & immediately change their tune once I start explaining my condition(annoying). I still feel like people view many of us as lazy, not realizing it's chronic fatigue or bad joint pain flare-ups, sigh. I have a type of Lupus that is not very common. It affects my kidneys & other organs causing me a plethora of fun symptoms👍🏼. Invisible symptoms. Like unexpected fatigue, joint pain, bruising, headaches, sensitivity to light, etc. So yeah, I guess we just have to build a higher tolerance for people that are ignorant. Love you babes!

    • @katyb2793
      @katyb2793 4 роки тому +3

      MirageEspejismo I got that so much at my pain clinic, and pain support group. They literally said what are you doing here you're so young. And insinuated I can't be in as much pain as them since I'm young.. that was quite difficult to deal with. but, I made one good friend, so I gained something anyways!

    • @MirageEspejismo
      @MirageEspejismo 4 роки тому +1

      @@katyb2793 Again, #superrelatable! When are they going to learn that just because someone looks young, it doesn't mean they are physically ok on the inside. Sigh. Like I said, try build a tolerance for all the idiots, it's all we can do! (◔‿◔)

    • @katyb2793
      @katyb2793 4 роки тому +1

      MirageEspejismo exactly! we have to build tolerance, otherwise we'd crumble. all the best for your health, you've got this!

  • @stacyw8466
    @stacyw8466 4 роки тому +2

    This video had me in tears. I have suspected hEDS and my doctor told me almost 2 years ago that I need to use a cane to walk. Everyone outside my kids and husband told me to wait because I am too young and it would be drawing attention. They made me feel like I should feel bad for needing mobility aides. Thanks to you both, I feel that I have the confident boost to know that I am not along and it doesn't matter what others think about it, its about what my body needs. Thank you both so very much!

    • @TheMazinoz
      @TheMazinoz 2 роки тому

      When a hospital physiotherapist gives you a cane, you definitely need one! That's what convinced me. I just wasn't sure before. I have a fold up one for interviews or similar if needed.

  • @TwistedGlitter
    @TwistedGlitter 4 роки тому +2

    I recently gained a friend at work with EDS. They were shocked I knew about it because so many doctors they've been to have no idea what it is. Thanks Martina for being open about what you're going through. It's been really educational and has helped me understand my friend more 💜

  • @SachitheCat
    @SachitheCat 4 роки тому +56

    I tend to strap my ankles when I'm not sure about how structurally sound they are that day, and I've been using a cane more often, typically on days where I feel worse or know I'm gonna be walking a lot/in a crowd/standing, or just feel like I need the extra visibility. I'm also tempted to use it every Tuseday, because I'm re-taking a class for the third time and I'm not happy about that. I think the cane might be a nice signal to say "yeah I'm legitimately ill." Beatrice is a $2.80 daiso cane that I've first covered in black gaffer tape, and then stuck more stickers over the top. She's getting more stickers, because stickers are amazing.
    I also want to get some compression gloves for my hands, because they're shit and I feel like it's worth a shot so I can play guitar and do shit without them hurting as much. I'm trying to find a black set, because then they look like a deliberate thing instead of a "I'm trying to hide these, but since these are a shade of puke beige I'm not doing a good job" thing, because if there's anything that's fun its trying to work the medical aids into the outfit instead of hiding it. One of my favourite looks was when I had a heart monitor for 2 months, and it was this cyberpunk look that worked with the cables instead of against them. I love stuff like that, because fuck it, I'm chronically ill and an alternative fashion weirdo, I'm already getting stared at for the patch jacket, hair, tattoos, piercings, and being a young person who dares to use priority seating, so why bother hiding it. Just go all out and they can all deal with it.

    • @TheMazinoz
      @TheMazinoz 2 роки тому

      Atta girl. Could you dye some beige ones?

  • @gemsioisnuberonecat
    @gemsioisnuberonecat 4 роки тому +8

    I found that puffy fabric paint sticks to compression sleeves and braces pretty nice!

  • @KaleidoscopeEffect
    @KaleidoscopeEffect 4 роки тому +2

    I have IBS and while I don't need a mobility aid, I did need them for two months when I hurt both my ankles 😂 I had to use crutches and a lot of people treat you SO DIFFERENTLY, I had strangers come and talk to me and ask me why I was using them and because I'm a young woman, whenever I took a bus, if I wasn't physically holding the crutches people still asked me for the seat... I couldn't leave the crutches comfortably to the side without being asked for the seat 😑 Also it was much easier and safer to climb into a bus by putting the crutches into the bus first and then climbing in on my own but I was scared that people would think I was "faking it" so I pretended to make a great effort when climbing in on my own lol Like I had a walker boot and 2 different ankle braces, I needed the crutches as a walking aid because I had to walk a lot not 2 meters... But people are so quick to judge you, specially if you are young.
    People really need to learn more about mobility aids...
    PS: One day I was really focused while climbing stairs with crutches (every video online says to rest the leg that isn't hurt to climb stairs, I was doing my best with 2 hurt ankles lol) and when I was almost at the top of the stairs I hear a voice asking me if I want any help and I look up... and loose my balance, luckily I managed to put one crutch in the step bellow and stabilize myself. The guy offering for help apologized to me later 😂 He took to long to decide to ask me if I wanted help... If you see the other person is managing is probably best not to distract them, I almost hurt myself really bad that time.

  • @sunshinesmiles5386
    @sunshinesmiles5386 4 роки тому +1

    I'm a completely healthy individual with no need for mobility aids, etc. I see a lot of people mentioning that is really frustrating when people _______ that I didn't even know was annoying or rude or anything! So I appreciate you ladies being open about these things, because it's really easy to be that annoying person, just because we didn't know. :)

  • @emills767
    @emills767 4 роки тому +3

    Thank you so much for this. I was diagnosed with an auto-immune chronic illness in January and this makes me feel less alone.

  • @persnickety2634
    @persnickety2634 4 роки тому +8

    Been having a really rough time down in the pit due to my chronic illnesses, looks like I need to be building a ladder! Sadly also at the stage that I have lost my friends due to then not understanding the restrictions my illness puts on my life. Hard to be positive when you don't have friends willing to reach out or accommodate. This is an amazing video and the hashtags have truely helped me a lot :)

    • @rayanagi
      @rayanagi 4 роки тому +7

      Chronic illness can be really isolating. Lately I've been putting myself out there more via Facebook and Twitter. Letting people know and being real without seeming whiney can be a challenge, but I have one understanding friend now who keeps offering to take me out for lunch. Baby steps.

    • @katyb2793
      @katyb2793 4 роки тому +3

      Becky Yanagi I've been struggling too ( had to move to my mum's town so I'm physically distanced from my friends). as time goes on I'm slowly forgotten by some. But it's the ones who don't forget that I consider true friends. And we truly are blessed to have social media. if we were like this before technology, all we would have was snail mail! 🐌

    • @AnnikaVictoria24
      @AnnikaVictoria24  4 роки тому +5

      I have been there (hugs). I can only promise you that it'll get better & Don't be afraid to put yourself out there. Chronic illness communities on Instagram are one of the loveliest, most accepting places I've found ❤

    • @TheMazinoz
      @TheMazinoz 2 роки тому +1

      My cat volunteered herself as an emotional support person. She even walks to the corner Aldi's with me, much to the amusement of many.

  • @adriennegonzales2636
    @adriennegonzales2636 4 роки тому +3

    I'm so glad you mentioned psoriasis! I have a lovely blend of eczema and psoriasis which has gotten me concerned looks when I wear clothing that reveals it to the world. It does need sunshine to help, shockingly. I always have to tell people that it's not contagious because that's the first thing they ask.

  • @Danijones4571
    @Danijones4571 4 роки тому +1

    Hi guys :) I am also a young person with health issues, it's so nice to see others understand it! I don't think I'm the same as you two though.
    One of the big things I have is psoas syndrome, I can't stand up for more than 5 mins as it's too painful as my hips pull my pelvis forward and a lot of weight goes through my lower back, had that since I was 10 am now 22. Idk if you'd consider that a disability per-say but it defiantly stops me doing a lot. Aside from that I have arrhythmia & fast bpm, precordial catch syndrome, anaemia (malformation), side pains, mebomian gland dysfunction (dry eye), and I used to have chest infection for 8 months, a uti that lasted 12 months straight and thrush that lasted 2 years.
    Yeah that's a lot of personal info but I think people like you would understand that it's all just medical terms and everyone's got a body, you get a bit immune to being embarrassed after so many specialist appointments and intrusive tests haha. Thanks for making this, lots of people just don't get it that young people can have problems too

  • @theresabajorek
    @theresabajorek 4 роки тому +2

    I spray painted my walker in gold and threw sparkles on it so that when people stare, I say, "I look good, I know." Fewer stares. Also, protip, there's double siding clothing type that help keep skirts and dress hemlines stuck in the right place and you dont flash anyone! Best disability hack I've ever gotten. Love your videos Annika! And lovely to meet you Martina

  • @celebkiriedhel
    @celebkiriedhel 4 роки тому +1

    I have a pink cane. I also cover it in washi tape. Although I'm not young (58), I don't see why any mobility aid should be plain. Especially when you are younger, it's another opportunity to express our creativity and personality. You inspire me with your creativity. (I'm going to try the nail polish idea!)

  • @joannetiffany8047
    @joannetiffany8047 4 роки тому +1

    OMG!!! You have just said everything I have ever thought or felt!! I became disabled at 19 im not 30 been diagnosed with 2 forms of chronic pain and still not converted from a manual wheelchair to and electric wheelchair because I fear the looks i get. Also Anxiety and depression are other conditions I've been diagnosed with. I agree, with #buildtheladder It's an achievement if I've got out of bed ect. X

  • @MiauMichigan
    @MiauMichigan 4 роки тому +2

    Annika and Martina together???? 💖💖💖💖
    Two channels I love and two people I admire a lot are together in one video!!!! This is awesome! Thank you for spreading awareness.

  • @truehoomanhere6230
    @truehoomanhere6230 4 роки тому +4

    When I move people can hear a lot of popping noises (either lower back, shoulders, knees, fingers ect..)
    Anyway, great video, it gives more visibility to people who might have those problems 💛 Love those two cute babes!

  • @AeriSoondingie
    @AeriSoondingie 4 роки тому +5

    I'VE BEEN WATING THIS FOR SINCE I LEARN THAT YOU WERE FRIENDS, I'M CRYING OMG, I LOVE YOU GUYS

  • @meloncornets3034
    @meloncornets3034 4 роки тому +2

    Thank you for this video! I love learning about this, especially to explain to my son about invisible illnesses. The few times my son sees wheelchair users, he says they are race car drivers.

  • @amaliemunk7067
    @amaliemunk7067 4 роки тому +10

    Thank you so much for sharing this with us! I don't have a chronic illness, but I find it so important to educate myself on this :) you are both awesome, keep being strong and fashionable ❤️ Love from Denmark

    • @katyb2793
      @katyb2793 4 роки тому +1

      Amalie Munk thank you! ppl like you are gold 😊

  • @AndyAbrams1029
    @AndyAbrams1029 4 роки тому +2

    Loved this video, especially since I’m not disabled and I don’t have anyone in my life who is, videos like this definitely help inform me how to be less of an accidental jerk.

  • @SquidFiction
    @SquidFiction 4 роки тому +7

    Love that one shot of Annika twirling in slow motion as 2 dogs walked by, was that intentional? Haha! Gonna check out Martina’s channel now too!

    • @AnnikaVictoria24
      @AnnikaVictoria24  4 роки тому +2

      Just an accident!! But I think it's my favourite shot of me ever haha

  • @sohv1s
    @sohv1s 4 роки тому +20

    I have autism and depression and other symptoms because of them and I was used to tell my diagnoses for everyone but then I noticed that people will freak out at first and it slows down getting know people and being bad at socializing it was a problem. Now I don't start introducing myself with them even though they tell much about me but I will tell if it's needed. I'm ashamed about it. I hope I could have a stick or a wheelchair type of item to show people around me I'm not ok. I wear almost always headphones when I'm outside and now when sun has come back and spring is coming, I'm wearing sunglasses even if it was cloudy day. (I have undiagnosed migraine and may have psoriasis but I'm waiting for results from biopsia. If I have psoriasis, I might have joint psoriasis too.)

    • @CallMeAlice818
      @CallMeAlice818 4 роки тому +1

      I've always been sensitive to light. It could be cloudy and I still need my sunglasses. I wish I could wear my sunglasses inside at work when the sun shines through the windows. I never understood how people can go outside with out any shades on.

    • @SomeoneBeginingWithI
      @SomeoneBeginingWithI 4 роки тому +6

      I'm autistic too and I also find it doesn't help to tell people straight away. Autistic people vary a lot and the traits that are most well-known are not all traits I have. So if telling people that is part of the first impression, they will usually assume things that don't apply to me. So I wait, and mention things as they come up. Like if I have to wear my sunglasses indoors I say it's because the bright lights make my head hurt. If it's really noisy in a crowded room and I have to leave I say it's because I have sensory processing issues and I can't think properly when it's noisy. And then when people know me well, if there are social issues I can say it might be because I'm autistic, and then it helps them understand me.
      I have a pin badge that says "not all disabilities are visible". I don't wear it all the time but sometimes I do. I think it's good because it doesn't tell people exactly what the disability is, so they don't get distracted by their stereotypes about autism, they just think "oh this person might be disabled" and then they're more considerate.

  • @probed100
    @probed100 4 роки тому +1

    Great conversation , in my 20s I stupidly refused to use a stick I have destroyed my hip but am not well enough to have a replacement . I was put in clinics with people in their 80s and 90s ( not good)
    How I wish I had found you earlier . Whenever I watch you you make me so much better about myself and coping
    🥰🤩😊

  • @murdocthedestroyer
    @murdocthedestroyer 4 роки тому +2

    This is so important! Thank you for bringing this to 2020! I feel so hesitant to use my wheelchair (luckily it’s very rare usage these days) but I got the brightest most violent green one possible! I struggle with people not seeing me as a whole person in a wheelchair, like if I’m in a chair then I must have a mental cognition problem, and it makes me feel so bitter sometimes. Anyway- thanks for sharing 💕

  • @MojieSky
    @MojieSky 4 роки тому +1

    I wanna know why someone would dislike a video about women encouraging others to live with society instead of hiding from fear of backlash due to disabilities. Like what’s bad about it?? “Oh no someone found a way to be happy and feel good about their disadvantages in life, how dare they!!”

  • @wiebelziel
    @wiebelziel 4 роки тому +2

    Annika I am so grateful to you and every #BabeWithAMobilityAid! I started getting severe pain in my hip some months ago (just got diagnosed with ankylosing spondilitis). Because I had seen women my age using walking sticks I knew it was an option to get one, and I feel (mostly) comfortable using it. It's such a game changer during a flare! If it hadn't been for that representation I would be struggling so much more.

  • @bkstrwld
    @bkstrwld 4 роки тому +2

    For the last week I'm battling with the idea of having a walking cane and all the feeling that come with being 25 y/o and need mobility aid and this video is really what I needed right now.
    Thank you so much ❤

  • @robertstanfill2360
    @robertstanfill2360 4 роки тому +1

    I'm with you sweetie. I have arthritis. One knee replaced and the other is having shots. My back has deteriorating vertebrae. At times I use a walker or a cane. I've always used bandanas, stickers, and scarves to jazz them up. The kids at my school like to see how I've used accessories that day. I'm 61 but gave had issues for several years. Don't judge. You don't know what they're going through. Love you both, Annette

  • @christacorvidae615
    @christacorvidae615 4 роки тому +3

    This video was so needed. Just got diagnosed with hEDS recently, have chronic migraines, asthma and an auto immune disorder. Seriously identify with pretty much everything you guys said

  • @Koriography2929
    @Koriography2929 4 роки тому +2

    i don’t use my braces all the time but i always get scared to use them. the worst is when both my wrists flare up and i have to wear both braces, people tend to avoid me then. but when i do wear them i love putting bracelets over them, i even made some for days i have to wear my braces. i have to wear shorts with my knee brace so i actually have so cool tattoos that create more of a conversation than my brace. i love this video because i feel a bit more confident for my flare up days. thanks to both of ya!

  • @darkfox3597
    @darkfox3597 4 роки тому +1

    I feel so much warmth from this video. The hope this video gives me is surprising. Both of you are amazing and fashionable.

  • @kayleeferguson8261
    @kayleeferguson8261 4 роки тому +2

    Build the ladder is a great idea . I do not have an illnesses but I do have bad anxiety and I feel like Build the ladder could help me.

    • @reeda5390
      @reeda5390 4 роки тому

      kaylee ferguson anxiety is an illness

  • @unetherized
    @unetherized 6 місяців тому

    I have a friend who shared some of her first responses to people who ask her "what happened???" Or "what did you do???" When theyd see her with her big giant leg braces. With a total poker face she says "yeah i really should have remembered the parachute when i jumped out of that plane" or "well that lap dance with the six inch heels..." obviously depends on the situation, but for her she was able to just laugh and turn the energy around.
    I still struggle with that feeling like i must have done something to myself, which is obviously insane, but then i end up thinking "maybe im just too weak and i should be tougher about the pain and push through" (which ends in total disaster).
    Thanks for bringing awareness and for sharing your experiences

  • @MLEbug
    @MLEbug 4 роки тому +5

    My walker is a vibrant purple which makes me feel really girly, and my cane has brass like finish with a wooden handle which makes me feel classy and a little steampunky. 😊
    It's still not enough to stop the comments like "you're too young" and 'you don't need that, you should give it to me" from the older generation, and quiet stares from the younger. 😔
    There are definitely days where I go without because I'm too tired to get the walker in and out of my boot or am just feeling especially self conscious.

  • @bigouff6763
    @bigouff6763 4 роки тому +2

    Oh my god! I had no idea that two youtubers who I loved separately would ever combine! I love this!!!

  • @imrebeccap
    @imrebeccap 4 роки тому +8

    My mother uses a wheelchair and I am super small and so is she (genes) and people are always asking if we need help when we go out. It can be really really annoying because they don't know how to "help right" or both of us are completely fine sometimes the help is the exact the worst thing to do or not helpful. It's annoying. I try my best to just ignore it and avoid helping unless explicitly asked. Or it's something I would do for a person without an aid (i.e. opening a door, picking up something they dropped holding an elevator )

    • @katyb2793
      @katyb2793 4 роки тому +1

      imrebeccap i try to just be grateful. at least they are showing concern. it would be worse if they saw us and cut in front of us in a line, or slammed the door in our face, etc.
      I know that's not easy, but I guess it's all about perspective ☺

  • @marieklem6752
    @marieklem6752 4 роки тому +9

    Just came from Simon and Martina's channel, and I loved your video there!! I really wanna get more into sewing more clothes :3 and Your style is so cute!!

  • @kathysammartano4432
    @kathysammartano4432 4 роки тому +1

    Even older people have trouble with people's assumptions. If I'm being pushed in my transport chair, people seem to assume that I am incompetent and ask the pushing person questions they should be asking me. One wonderful friend looked incredulously at the receptionist who had asked her if I had flu symptoms and said, "She's right here." Schooled.

  • @Lucieff
    @Lucieff 4 роки тому

    I "only" have mental disabilities, not physical, but I wanted to give my support and understanding.
    When I was 16 I had knee surgery because of luxating patella, and even with my giant brace, that went from ankle to hip and my crutches, I heard a lot of shit... One day, I was yelled at in a bus by an old lady, for sitting on a seat for elderly. I got annoyed and mad, it hurt a lot that day, so I ended up standing up with help from my crutch and yelling back at her, that "the seat was for elderly AND disabled". I felt so bad afterwards, cause I don't yell at people, but that really shows you, how blind people can be at the possibility of disability, just because you're young.

  • @sheepishlysharing
    @sheepishlysharing 4 роки тому

    Oh, goodness! You two have just won my heart! What a BRILLIANT message delivered in such a FUN way by two different ADORABLE personalities! 😍

  • @kateleighlambley1106
    @kateleighlambley1106 4 роки тому +1

    MY TWO FAVOURITE BABES! This is most amazing duo ever (and very informative!). I have fibro, endo, CFS and now intractranial hypotension, and I'm finally feeling stronk enough to dress up again, and it feels so good! Amen to elastic waists, all my skirts I've made for myself have an elastic backing which have taken me through 2+ dress size fluctuations, and much more comfortable!!! I can't stand uncomfortable/too tight fashion clothes since my fibro diagnosis.

  • @isabellecw1
    @isabellecw1 4 роки тому +2

    Thank you for these videos. You and Martina have been so wonderful at helping me accept my invisible illness and the adjustments I've had to make to my life. Also, you two are such BABES!

  • @Keks148
    @Keks148 4 роки тому +4

    That was a really uplifting video!
    I'm not born with a condition that made mobility a problem, but I had an accident a few years ago and am now slowly accepting that using my leg will never be the same again. But I'm struggling with that quite a bit, mentally.
    I really liked the ideas of decorating and making the aids themselves fashionable. I think I can use some of those ideas on my bandages and maybe I'll get a cane, too. I never knew there are foldable ones, but now that I know it they seem like a possibility for those moments when walking just gets too much.
    Thank you both so much, this was really informative. I didn't know Martina but she seems like an awesome person, too. I'll go watch her video now and I hope everything I wrote was clear, since english is not my first language.

  • @kayelinrutledge5064
    @kayelinrutledge5064 4 роки тому +1

    I have Transverse Myelitis and anytime I'm going on a vacation,going to a convention, going to an area I know I will be walking a lot, etc. I bring my cane! I'm 21 so people definitely seem a little confused sometimes. An reactions can vary from way overly polite to people wanting nothing to do with me. SO glad you made this video! Hugs and Spoons to you both!
    Sincerely,
    another babe with a mobility aide.

  • @elsagreen1476
    @elsagreen1476 4 роки тому +2

    You two should model mobility aids. You make them look so cute and glamourous!

  • @sarahportelli93
    @sarahportelli93 4 роки тому

    I jazzed up my wrist supports with some puffy fabric paint. One says: 'No pain, no gain... I guess?' the other has 'Everything in life is a joint effort' on it.