I'm Tired... Being Disabled Takes A Lot of Energy
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- เผยแพร่เมื่อ 18 ต.ค. 2024
- #blindness #visionloss #dating #disability
Energy is something we can't see. When we talk about energy expenditure it gets even more complicated because there is no standard form of reference or quantifiable value we can place on activities. Having a disability can absolutely affect how much energy an activity takes. Let's chat about that. I want to hear your thoughts in the comments below! Have you experienced fatigue because of your disability?
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Thumbnail Description: Tamara with her head in her hands looking off in to the distance with an exhausted expression on her face. On a grey background black text says I'm Tired.
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Filmed on Lumix G7
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It’s the blindness paradox. We are strong and competent and confident but it really takes it’s toll, living in an environment that is not designed to be lived in without vision. Great content as always! Hope you are able to get some rest. Take care, Beverly
Hi Beverly! Thank you so much! That was so well put. It is a paradox of disability to be competent and confident and uncomplaining in a world that doesn’t think of us when it’s designed. So it really is no wonder it’s exhausting to live in it. I did get a few days of rest. Thanks for asking :)
Just yes!!! Since most of my disabilities are physical and I’m very new to the low vision world, I really appreciated your sharing more details about how much longer things take as a blind woman. Somehow I still thought that with practice VoiceOver would be fast and easy, which is so crazy since I deal with so much in my life that takes lots of extra time due to how it’s made accessible. I’m not usually that, well, short-sighted so thank you for this. Hoping you’ve had the space to rest by the time we’re seeing this!
Hi Amelia! Thank you! I’m doing much better and took a few well deserved days off. It’s not always slower, but some things certainly are. I think most of us have run into that challenge of needing extra time to make some things accessible. I am hoping you are well!
I am going blind myself. Just know that there are others in this little bio sphere. that get it. That and are cheering you on as they race with you.
You are so right about our disabilities being exhausting!!
In addition to anxiety and depression, I have dyslexia, etc. Sometimes it can take me hours to figure out what someone else might be able to grasp in a second. The only good thing from it is, I generally retain it. They don't. (They took 8 years of Spanish, and can only say "Taco" and "Cerveza". Me: 4 years Spanish: Degree, and can converse fluently.)
A lot of people don't realize how exhausting it can be for an introvert with anxiety/depression to work in a customer service field, and share an office with an extrovert with ADHD. -I am so glad that more of us with disabilities are beginning to talk about the fatigue, as opposed to thinking we have to look strong and competent at all times. Thank you for your courage!
I took care of a gal who was a diabetic. She once asked me, "I'm tired of having diabetes. Watching what I eat. Not being able to have an entire container of ice cream if I want to. Having to check my blood sugar 4-8 x / day. Having to take insulin...Can I just be done with having diabetes?" Girl, I wish!! -'Cause I want to be done with my diabetes too!!
Hi Tamara, it's Harley again. My heart goes out to you. I respect your strength and determination so much. What a rough balance to keep between keeping your appearances and caring for yourself.
If I may offer an unsolicited word; it's okay to be weak. To need help. To need time. You are not a burden to anyone. You're a survivor and a trooper, and not making, recognizing, and adhering to your own boundaries will only be self-sabotaging. You can't pour from an empty cup, and we all need to lean on others and adjust and find our own ways of doing things. You can be both. It doesn't make you any less strong or valuable or unique. If anything, it is a show of strength.
So, rest. Make the time. Set reasonable expectations, and communicate your needs and boundaries. It's amateur advice, I know, and unasked for. I haven't hardly a clue of your experiences, your circumstances, hell, not of anything you don't talk about in publicly-accessible ten-minute segments.
Tamara, please live reasonably. Don't suffer for the sake of others' opinions, expectations, or deadlines. I implore you. Live your life your way. The world isn't built for women like us. We have to build our world ourselves. A gradual, constant process.
Anyway, there's a long rant for you. I apologize if I came off as patronizing or demeaning. I truly have utmost empathy and respect for you, and your unique experiences. So, thanks for enriching my life, intellectually, emotionally, and culturally.
All the best,
Harley.
I do appreciate your very kind words. And it is something I need to hear and internalize. It is definitely a delicate balancing act and I’m working on it. I did get a few days of well earned rest and am feeling much better for it! Hope you are well and taking your own advice. :)
Thank you for this video
My pleasure. I’m glad you found it helpful :)
I can relate so closely to this. Thank you for stating it so eloquently and for shedding light on the fact that our lives are really, really hard in many ways sighted folks don’t have to worry about. Thanks for being so vulnerable and honest. This was really meaningful.
Thank you! I’ll be honest, I was so nervous to post this one as I think many of us feel we need to be a paragon of strength and capability all the time.
@@UnsightlyOpinions I think this showcases an inner strength that people often mistake. This says, I recognize when enough is enough for a while. You were open, honest, truthful and real. There’s so much strength in that.
I’m sharing with my family (who are all able bodied) because my vision loss is a learning experience for all of us
I’m glad you found it helpful! Could not agree more. I’m still learning and I’m 29 years in!
I am glad you put this video out, it does take a lot of energy to keep up. I have a wife, two young boys, and we own a house, and of course I have a full-time job counseling people with addictions I’m writing progress notes and treatment plans and doing everything That cited do. By 8 PM I am going to bed no one is stopping me, LOL I was gonna say to myself what a gift to be able to see. Well I gotta go family is calling
Boy do I feel that! I can’t even imagine how you keep up with 2 boys on top of all of that. Even if all you do is rewarding and fulfilling it still takes a lot. Wishing you the rest you deserve. :)
Oh, how well I understand how you felt when releasing this video. I was in a similar place when I first saw it. We all go through moments like these. Keep your head up, rest, and carry on!
Sound advice! I’m definitely back in my stride now. But I think it’s important to acknowledge those moments when we aren’t strong.
I could pretty much identify with everything that you said. Things do take longer many times, and many of those times I get frustrated. Sometimes I wish people would better understand that some tasks for me need to take longer, and that I’m not being lazy. I just need to do things in a slightly, or more different way.
Very true! I’m always afraid of people thinking I’m lazy even though I’m working flat out. I guess all I can do is try to explain my position and my experience and hopefully people will understand. :) hope you are well!
I agree with you 100%. I'm a little bit older than you. Actually I'm in my '70s so I've retired and now really don't have to worry about work anymore but when I was working and none of the protections that handicap people have today were in place when I was working it was constant to have to prove myself and that can be totally nerve-wracking. And to this day I still have issues with finding new places and getting around new places. So I think your spot on. We all get tired.
I'm so glad you found it helpful! If ever you need any accessibility testing, please feel free to reach out!
i so get it! thank you so much for letting us know that we are not alone at getting so wore out
It’s so important to talk about the good and the bad and share those vulnerabilities because from the outside it can look like we always have it together when we don’t and that’s okay. We bounce back and keep on trying. :)
I have albinism as well. As you say, it’s about balance. Feeling sorry for yourself or tired or frustrated etc due to what comes with our disability is just fine-I would say, impossible not to experience. I’ve been there too, bad days. But as long as you’re not there every day, you’re doing fantastic-balance. Thx so much for your channel❤️
Couldn’t agree more! I’m feeling much more balanced and happy but I think it’s important to communicate those times when we don’t feel 100% and talk about challenges because it’s too easy to see someone as perfect or having it all figured out when none of us do. So glad to have you as part of our community. 🙂
Oh my gosh, yes! Subscribing right now!
Thank you! I’m so glad to have you join our little community :)
You are right! I am 52 years old and legally blind. I still have days that I feel so tired. Even when there really is no obvious reason. Even in the home I have lived in for almost all my life, I still have to be constantly aware of changes. I don’t live alone.
Hi Kimberly! I’m so glad to hear you say that. I always had this fear that it was just me struggling with that, especially with other people coming and going in my space and trying to keep track of everything!
That was beautiful
Than you for sharing
Feel free to call on us if you ever need anything because if we are able to do it - then we are all yours
Especially now that we are practically neighbours ❤️
Thanks Ronda! I will definitely reach out if I need to 💜
Good for you! Much admiration headed your way.
I am a 72 year old male with albinism. I have been fortunate enough to have the sight to have gone through to an advanced degree in music.
God Bless You!
Thank you. I’m always happy to meet a fellow PWA! That’s fantastic. I’m so glad you were able to achieve so much and follow your passions in music. It’s not something I’ve mentioned very much but I am also a musician and multi-instrumentalist. What’s your instrument?
@@UnsightlyOpinions My instrument was percussion in school. I was a Tuba minor in grad school. Lots of fun! Today I'm working on bass guitar.
For the past 25 years I've been involved in barbershop harmony. Sang in choruses, directed a Sweet Adelines chorus and done some arranging.
I've been deeply immersed in music for most of my life.
I truly understand. I find it incredibly exhausting to learn as I go. and keep up the strength and pace as my journey goes on. I greatly appreciate these kinds of things as While I know I am not alone it is comforting to know others share my struggles, and It somehow lifts me up. Thus giving me the grit to push on. Blessings to all you know and love. Cheers.
Thank you for sharing. I always find it comforting to hear that we are rarely the only one experiencing something no matter what it may be. Wishing you peace, rest and perseverance. :)
I think you are right and you are doing an amazing thing. I am legally blind I have sight but I am disabled . Even though I have sight I still have to do thinks differently and it can be hard at times because things take longer to get done. But in ur case I totally get it u have to do so much and it is inspiring to see u doing what u do. Thanks so much !!!!!
Thank you! I appreciate your kind words. It’s always nice to hear that people share a similar experience and can empathize. It definitely makes the challenges a little easier. :)
Thank you so much
Tamara, bear in mind, “you are enough.” Most things can wait until tmr. “Tyranny of the urgent” hounds us & makes us feel doubt & incompetent, don’t be strangled by it. Breathe & keep at ‘er. Reach out for assistance from your supportive circle!
Very apt words! I will endeavour to live by. I definitely do take advantage of the amazing people in my life when I need a pick-me-up.
I can totally relate an understand where you're coming from doing what I do with blind garage physical mental and emotional toll sometimes get on top of us my blind soul sister but you share it with us openly thank you sending you hugs from Australia remember my channels motto keep your tyres turning
Thank you! I will certainly endeavour to do so!
@@UnsightlyOpinions what we do to raise blind awareness is a gift and a blessing but takes so much dedication and energy if ever you feel like a chat Jason blind garage Reynolds on Facebook would love to swap opinions and experiences and if this goes for any blind person needs to vent feel free to message me for a chat
I completely sympathize.
Thanks Kevin! It’s a rough world sometimes but we can feel better commiserating with all of the other folks experiencing the same things.
I can totally relate about the new space thing I just moved into a new apartment not even two weeks ago
It’s a huge advisement for sure. I hope you are enjoying your new place. :)
Oh, and whiskey can help a little at the end of those off days lol
Haha doesn’t it just. Too bad I don’t drink lol
As an autistic person who is learning grade two braille, it's hard for me to tell people that I need breaks because being disabled isn't easy. Most people expect you to "get over it" or they will say "people have it way worse than you! Suck it up!" Those non disabled people don't see that if we push ourselves more than we need to, we run the risk of burnout. If we aren't given time to regulate and rest, then we won't be as capable of doing things.
Very well put! I’ve had similar experiences where people didn’t understand my limits or understand why I needed breaks. Hopefully by talking about it, it can help those that don’t feel this way understand some part of it.
I always feel tired and it’s super annoying, and I do have some sight, way less going on than you as far as everything you accomplish and disability-wise. I think even just thinking about the world and the lack of DEI exhausts me!
I’m sorry you are exhausted as well. It’s rough to feel rundown all the time. I try not to compare my exhaustion to others.it’s hard to judge what others experiences with something are and a disability can be no big deal to one person and life altering to another. I always aim for compassion for myself and for others. It doesn’t help to think one has it worse than another because we end up putting ourselves down thinking we aren’t trying hard enough when we are. I like to say, don’t judge me by my good days (the ones you see wrapped up pretty with a bow online) trust me there are many that are terrible and I don’t or can’t show them. Sending gentle hugs and a hope for rest. 😊
Being blind, everything takes more time and creativity, a different rhythm to life.
For sure! I couldn’t agree more. :)
Miss you sister me too albinism from nepal
Always happy to have you join us!
I actually don’t feel fatigued due to my disabilities very often, but there are sometimes when I’m like, do I have enough energy for this activity, which is very rare. I feel fortunate to not deal with fatigue due to my disabilities.
I’ve had to make those decisions too. It’s tough, especially when the thing you cancel is the thing you want to do rather than the thing that needs to happen
@@UnsightlyOpinions yes! I had my 8th grade orientation yesterday and then after that I got my nails painted with a friend. After my orientation I was tired because I walked a lot (my Cerebral Palsy affects my speed and stamina) and I was also nervous so I think my heart rate was spiking. I ended up getting my nails painted but I was like “do I feel up to this?”. I also struggle with auditory sensitivity so I was struggling a bit with the background noise in the nail place. But I really like how my nails turned out so it was worth it!
@@LindySouthern243 I’m glad to hear you were able to get everything accomplished you were hoping to. Now take a rest and enjoy your time taking care of yourself! :)
You talk a lot about being hyper-aware here. Do you, like me, notice yourself being very jumpy when it comes to sudden and/or loud noises that intrude on you? For me, my theory is that this is related to this hyper-awareness.
Definitely! I’m someone who jumps and startles frequently at loud or sudden noises It’s something that’s always bugged me, but I haven’t found a great way to deal with it yet. I think there definitely might be something to your theory!