Seeing the world through green tinted glasses - living positively with chronic illness and disability.
Join me as I share tips and tricks for living with a variety of conditions, including: - hypermobile Ehlers Danlos syndrome - postural orthostatic tachycardia syndrome - complex chronic migraine (basilar type and hemiplegic) - complex PTSD - multiple allergies - and a plethora of related conditions.
You'll also find accessibility reviews, mobility aid style and wheelchair adventures with my StreetJet bike attachment.
I partly put on make up sometimes because I want to look capable and put together so no one can see my mental illnesses or disability but since I already don’t look disabled I end up getting treated like crap either way. Just cause one is disabled doesn’t mean they’re not capable and it doesn’t mean we don’t like to look nice for ourselves. For some of us maybe doing our make up is hard when disabled but for others that’s not one of our disability struggles but it doesn’t make us any less disabled. I’m glad you can talk to your daughter and she can learn from you.
@whentaniatalks I agree. I have had a hard time figuring out how to bring it up and advocate for myself because I suffer from an invisible disability and I had a slew of dismissive experience from professionals and my family while aquiring it. It is very empowering to see people who are disabled show the confidence you embody(:
meanwhile i have an invisible disability apart from some faded surgical scars. I actively try to look less capable as a cry for help since im not responsible for noone but me
I hear you, I am in a similar situation to you, but I still try my best to look okayish and tell people when I am having trouble. I don't care what other people think about me. the looking okayish are for me. hugs 2 you
I once had someone follow me, with my newborn wrapped to my chest, wanting money! It makes me so sad that people are that desperate that they would target a disabled new Mum.
I’m really sad you even had to make this video. I have heard however theft is very common abroad (I’m assuming by your accent you’re living in Europe 😂, I’m Canadian).
Thank you. I'm in the UK. I'm lucky I've only been affected by theft a couple of times. I hope that precautions like this reduce the likely hood of having things taken.
Thats terrible that you have to do that. I mean obviously do what you have to do to protect yourself but it just sucks that you have to worry about that.
Lovely to see you back with some videos Tania! I was a subscriber years ago, and today I saw your picture in a fashion video and was reminded of your channel😊 In terms of project pan, I am making good progress with a highlighter balm that I don't like as a highlighter, but have been using as a lip gloss instead. Video in question (around 13:33) ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-TWGqwxUYlMs.htmlfeature=shared
Thank you so much, it's good to be back! Great idea to use your highlighter balm as a lip gloss. I'm going to start using my powder highlighters as eyeshadow or I'll never use them up! Thank you for sharing the video I was featured in - what an honour to have been included! ❤️
Loved this! I fond it so interesting that something you used to love, doesn't really work for you anymore. I feel the same way about perfume. And I feel for you when it comes to the eczema. It ruins so much😕 Hopefully you can go back to using just handcream soon. I'm at a point where I've stopped using hydrocortisone, because I had to use more and more in order for it to work. It really scares me. So now I just want to see how long I can tolerate my eczema, before I have to start again🙈
Thank you! Perfume has become such an important part of my self care since becoming a Mum. It's been a wonderful voyage of discovery and learning what scents really speak to me. Do you have a favourite perfume? I'm sorry you're dealing with challenging eczema too. It's hard. Totally understand not wanting to use too much medicated cream. I hope it stays manageable for as long as possible. ❤️
@@whentaniatalks I know! I think my favourite perfume of all time is Cerutti 1881 Pour femme. It a lovely complex floral (and I don't really like florals), with a vanilla base. What's yours?
Omg, I recently had a conversation about this, except this was for things like ADHD, ASS, giftedness etc. People will talk about how education needs to be so and so to be more accessible, but in a classroom of 25-30 kids with 2-4 with extra needs it's just not possible to accommodate everyone. I will obviously do my best but often people will generically say 'if only school was more so and so it would be better for everyone' , which is just not true.
It's so hard when there's a large group of children. Differentiation is essential, but schools can only work with the resources they have available. All children deserve access to education but this can look different even to the same child on different days.
Conflicting access needs are a huge part of disabled lives and this is a good example but I can't help but think about how the solution to both of those problems is to modify spaces so all entryways are level with the ground! No need for steps or ramps!
Absolutely! I definitely think more needs to be done to cater to as many people as possible. Providing options would be a good start, so people could use whichever is most accessible to them.
The cane is because the person is blind or visually impaired- it helps with depth perception and detecting obstacles. The user may still have some vision left, but not enough to get around safely in every day life x
Thanks and good luck to you! Do you have a favourite shower gel brand? It’s something I’ve never used, but have recently started to consider after a friend shared how they find the scent and experience of using shower gel really soothing. ❤️
Good job with making sure products don't go to waste! I am trying to use up all of the old lipbalms I have from over the years myself. I also wanted to say thank you for representing those of us with photosensitivity/photophobia with those lovely glasses. I have to use color tinted lenses full time and you make me feel more confident to rock them.
I can’t express how much your kind words mean to me, thank you! Lack of representation for photosensitivity and tinted glasses was something I was acutely aware of and it means a lot that in some small way I am filling that gap. I appreciate you. Good luck using up your lip balms! Do you have a favourite lip balm brand? ❤️
@@WackyLisa I’m sorry people have said this to you. I find makeup helps make my eyes more visible from behind my glasses. I enjoy it and find it a form of self care and self expression. I’ve made a video about this a while ago - I’ll find it and upload.
‘What’s wrong with you’ is such an insensitive way to ask your disability. I just ask it back to the person who asked. 🤣 I’d much rather someone asked my disability politely so I can be an advocate and spread awareness. 🙌
It is! I find it quite overwhelming to be asked, even politely, when I’m just going about my day. To the point where I pretend I don’t hear people and move away. I think it’s a trauma thing for me and something I’m working on. ❤️
Great video Tania! I would love a video about using a cane with Irlen Syndrome!! I use a symbol cane and would like to use a long cane to reduce visual fatigue and the effect of night blindness/photosensitivity but I worry about not being “blind” enough ❤
Thank you, thank you Tanya I really appreciate your responsiveness :-) now I’ll send this along to the friend I think needs it and keep it in my back pocket for later
This short really needed a voice over. I'm generally a fan of your content and was excited to see this as I'm legally blind and have EDS. If it's there and the problem is user error please tell me.
Thank you for this feedback Lisa, I appreciate it. I'm still getting to grips with short form video and didn't realise that there's no audio until it had already been published. I'm not well at the moment, but will get a new version, with voice over, up as soon as I can. I want to make my content as accessible as possible and will do my best to make sure this doesn't happen again. Your support means a lot, thank you for being here with me.
@@WackyLisa Thank you for your understanding Lisa. I won't always get it right, but when I miss the mark I will do my best to fix it. The new version is uploaded and can be found on this link: ru-vid.comfzoBFyWI0JI I hope you enjoy it.
This is helpful. I'm getting my first wheelchair (also have hEDS - but my dysautonomia is the primary reason for needing a wheelchair). My mobility and seating OT wants me to consider an uncommon bike attachment ("Cheelcare companion), while I prefer a SmartDrive. I know there can be issues with either, but the wider turn radius and having to have my hands up while operating (which can trigger migraines and dysautonomia worsening) makes any bike attachment a no go for being my primary power assist. My existing wheelchair skills are much better with a regular turn radius rather than having something in front of me - like you have to in this and other videos with your bike attachment. We don't have many trains in Canada. Here in Toronto, there's the subway and streetcars (trams), which don't need assistance staff to get on and off.
I'm so glad the video was helpful. I'm sorry - it sounds like your OT isn't listening to you. I hear you with the turning circle, it was one of the reasons a bike attachment wouldn't have worked for me a few years ago, because of the places I needed to be able to access. If you're able to, it's worth trying/considering a Smoov - very similar to a SmartDrive and they seem to be more reliable from what friends have said. X
I'm an ambulatory wheelchair user. I can walk a little, but not a lot and not consistently. If you look closely, you'll see my arm wobble because of how much I'm having to lean on my walking stick to stay upright.
They're not sunglasses, they're precision tinted lenses (coloured glasses), They help with my photosensitivity, complex chronic migraine, photosensitivity and visual processing disorder.
Thanks for showing this experience. I too panic about the train taking off without Assistance has removed me from a service. Many many close calls. I’ve spoken to many staff onboard while I panic and wait and they said if were not with you onboard to know Assistance haven’t showed up and the train locks use the emergency stop button. I was concerned about doing that since they have signs threatening fines for misuse, but onboard staff have often said “well that IS an emergency” that’s reassuring as I’d stopped travelling without a PA or companion because of the near misses (usually companion will flap about and shout down the platform etc to attract attention and help- which I couldn’t) I’ve not really been out on public transport since before Covid -never mind solo adventures, but it’s a little security blanket of confidence if/when I do.
Yes, I've been told to use the emergency stop button too. Only problem is that on some trains, they're too high for me to reach. 🤦🏻♀️ We shouldn't have to think about these things - we've booked assistance AND been put on the train. There's no excuse for it. Thankfully most of my journeys are positive, but when it goes wrong, it really goes wrong. Level access trains are slowly being introduced, so hopefully some time in the future we won't have to worry.
I use a train regularly, with my Triride. Some trains are OK, others (CROSSCOUNTRY) are impossible for me to get into the wheelchair space unless I disconnect the Triride before boarding the train, and get Assistance to wheel it on separately. It's the table that gets in the way of the handlebars. I have the same problem with phone/throttle/scanner - why can't there be a scanner on both sides? 🙄
Yes! Scanners on both sides would make such a difference to so many. That's really interesting that you've had problems with Cross Country - they were a nightmare for me when I tried to book assistance for this journey. Thankfully neither stations were Cross Country's, so I didn't have the hassle that you've had to deal with. Thank you for the heads up about their stations, its really helpful to know. Xx
I regularly use Birmingham and surrounding stations (Leamington staff are lovely 🙂). It's the trains themselves, not the actual stations that cause the problem. Not always possible, but if I can avoid a CrossCountry train I will do.
I've gone through three now dead " smart" drives . About 20% of the time I ask it to stop it ignores me . Would you get in a car with brakes that refuse stomping on the pedal 20$ of the time . I have regrettably plowed into unsuspecting people at times . Ali baba has many options for the trailers you ended up with . Some not that much $ . I myself cut an ebike in half and mounted it on the back ,paired with a free wheel that I love ( and hate) I go 20 mph , sometimes 30 downhill giving me what pleasure I get in this limited life of disability .
I'm glad you've found a solution that works for you. I've been shocked by how many people have had problems with their SmartDrives, since getting mine. They should be flawless for the money they cost.
Smart drive sounds like it been a nightmare glad you have found another mobility solution for you. Hope it lasts longer too! I just had to buy two new wheelchairs because after two years they broke.
It was great, when it worked. From experience, there seems to be a lot of inconsistencies in each of the elements - bluetooth worked better on some push trackers than others, buttons felt different, etc. I suspect this was the bracket issue. Frustrating, as I didn't have a problem with the bracket on the demo unit I had on loan. One of the appeals to the bike is that they're designed for far more rugged use than mine will ever get and the battery is external so won't require anywhere near the level of work that the SmartDrive would have to replace the battery. So frustrating that some wheelchairs and power add ons just aren't built to last a reasonable amount of time. It's awful that you're having to replace both chairs and that they've not lasted as they should. I hope you're able to get something(s) that will serve you better. It's not good enough. Xx
