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To Truely Know Me, You Need to Acknowledge my Disability and EVERYTHING that Comes with It #Mobilityaid #Disability #CerebralPalsy #Friends

Recently I have seen a lot of posts saying, ‘see me not my disability’ or ‘see me not my mobility aid’ and while everyone is entitled to their own opinion, I am not against that. But these sayings have been rubbing me the wrong way because if you ignore my disability then you can see all of me. Or if you don’t see my mobility aid, crutches, wheelchair whatever I am using then I am never hanging out outside of my house because I can’t trust you will help me adapt things or to ask about accessibility and that is anxiety that a friend should not put me through if you really understood all of me. Am I in the minority for feeling this way? I would love to here your thoughts.

5 reactions

Why Can’t Adults Stop Themselves from Staring at Me When I am Just Existing? #Disability #Staring #Mobilityaid #CerebralPalsy #Ugh

As a person who has been disabled their whole life I have gotten used to many ableist interactions throughout my life, I have become a pro at handling the awkward, intrusive comments or questions and so much more. Including staring which doesn’t often bother me, because I understand that people can just be curious and sometimes its better than inturupting my conversation. Or they may not even realize they are doing it because they are in their own world. But todays staring incident really rubbed me the wrong way, I was on my way to the post office and this man on the street was leaning against a store that I was walking by. I could feel his eyes on me, so I turned and I see his mouth open, gawking at me, mind you this a grown man. So, I smiled hoping that would brake him out of this weird trance, but no he just kept on staring. At this point he is craning his neck to follow me, and observe me in my wheelchair. When you actually have to change positions to stare, maybe that should be a sign to stop staring! I am not a zoo animal to be gawked at, I am a person just going about my day! How would you like it if I just stared at you as you walked around mobility aidless? I doubt that he intended to make me feel like a zoo animal, but he really did just transport me back to when I was 5 and hadn’t learnt to ignore the eyes following me yet. It just really pisses me off that I have worked so hard to feel comfortable in my own skin, to be a good disability advocate and adapter but that man was able to make me feel so small so quickly.

3 reactions 2 comments

The First Time I Used My Cane At School {And how I realized that I had nothing to worry about} #FunctionalNeurologicalDisorder

It's been nearly a year since I started using my cane regularly at school. Although I'm now able to use it with out feeling too anxious, that wasn't always the case. I remember when I first got it, it was in the middle of 10th grade. I had finally worked up the courage to take it to school....and I left it in my bag. I didn't even take it out, I was so terrified of someone seeing it.

The summer break before my Junior year, I had MULTIPLE panic attacks just thinking about using it. It was the fact that people would notice me, and would be looking at me. That terrified me, I couldn't handle the thought of being noticed by others, even if for just a second. I already dealt with people looking at me due to my tics, I didn't think I could handle being looked at for another reason on top of that. Nethertheless, I knew I needed to bring it to school, I knew I that the benefits would GREATLY out way the anxieties I had. And so I did, I brought it.

I was so nervous the whole week before school, infact I had a pretty huge breakdown caused by my stress and anxiety. Still, the first day of Junior year I brought my cane. went suprisingly well. There were a few stares, but they weren't as common as I thought. The few questions I got, were all asked by my teachers. No one was rude, or made me feel embarrassed to use one. By the end of the day, I had realized I had nothing to worry about.

I go to a decent sized school. And there's a handful of students who also use mobility aids. I think that knowing that helped me a bit with my anxiety, and the feeling of feeling alone. Infact, towards the end of my first semester of Junior year, a student who also uses a cane transfered to my school. It turned out that they were my friend from middle school, who ended up moving. We became really good friends, even closer than we would be if we didn't both bond over using mobility aids.

I'm really glad I didn't give into my anxiety, and that I still brought it despite the intense panic I originally felt. It has helped me immensely with dealing with the symptoms I deal with from my FND. Though I still sometimes feel anxious using it, it's nowhere near as bad or constant as it was in the beginning.

I'm writing this to not only share my experience, but to hopefully help someone who wants, or needs to use their mobility aid in a more public setting for the first time, but is scared, to realize that although it can be scary at first. It will be ok. Even if people stare, and make rude comments it will be ok. Your saftey is hundreds of times more important than what others might think of you

#FND #FunctionalNeurologicalDisorder #FND #Disabled #Mobilityaid #BabeWithAMobilityAid #Confidence #Disabledandproud

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Radical acceptance

I am 25 years old and suffer from fibromyalgia and about 5 months ago I developed plantar fasciitis in my right foot. Essentially, I struggle with chronic pain, and for me it mostly effects my lower body. This includes; my back, knees, ankles, and feet. I was advised by the pain clinic to start using crutches a couple of months ago. But due to anxiety issues, I really struggle with this. I don't use my crutches outside of the house even when I really need too. Unfortunately, my pain has now reached a point where I cannot physically stand or walk AT ALL without the use of a mobility aid. I feel like although this has been a long time coming, I am finding it extremely difficult to comes to terms with the fact that my body cannot do what I need it too. I'm only 25 and chronic pain has left me physically disabled. I just feel like this is so unfair.

If anyone has any advice at all about accepting the use for mobility aids I would really appreciate it. Thank you so much for taking the time to read 🙏 #Disabled #Fibromyalgia #PlantarFaciitis #crutches #Mobilityaid

13 reactions 9 comments
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Post surgery question ? #ChronicIllnessEDS #EhlersDanlosSyndrome #ChronicPain #MedicalZebra

I have made it 2 weeks since my ankle surgery to repair a few tendons and ligaments. I got my stitches out today, 30 total. I now have steri strips to continue healing of the incision. I have a few smaller blisters along the incision and one larger on my ankle bone where I've been having more pain from my walking boot. Surgeon said it's normal and nothing to worry about just to watch it. Has anyone had this happen ? #ChronicIllnessEDS #EhlersDanlosSyndrome #hypermobileehlers-DanlosSyndrome #Surgery #Mobilityaid #Zebra

14 reactions 6 comments

my quick answers to strangers’ questions :)

just wanted to share that I FINALLY figured out a short, not too personal way of answering questions from strangers. I wear a c-collar nearly 24/7, and sometimes use a mobility aid, so I get a lot of strangers asking me “what happened?”. Ive learned that the easiest way for me to answer that is to just say “oh, just faulty genetics.” I sort of laugh it off, and smile (I also use humor as a coping mechanism, but this just works so well… lol!). They aren’t entitled to any answer at all really, but I find this is often enough to end the conversation in a friendly way. Sometimes though (if I’m feeling up to it), it provides space to teach someone new about EDS, which can be really neat!

#EhlersDanlosSyndrome #HEDS #HypermobileTypeEDS #CCI #AAI #Mobilityaid #MightyTogether #StayStrong

24 reactions 11 comments

Mobility aids and Imposter syndrome

I think it’s time for me to get a mobility aid. I struggle standing and walking due to dizziness and fatigue. I am afraid to bring it up to my mother because I don’t think I communicate the extent of my struggles.
This also comes with a lot of imposter syndrome and I feel like I am over exaggerating if I use a mobility aid.

Any tips on how to go about this?

#Mobilityaid #Fatigue #ImposterSyndrome #crutches

1 comment

Does anyone have suggestions for mobility aids?

I have a cane that I use when I need it but when I flare up my shoulders and wrists are usually pretty affected so it makes the cane very hard to use. I thought about specialized crutches that you rest your forearms in but they look pricey. I've seen people using rollators too but they aren't really for weight bearing. Any suggestions? Cause otherwise I'm probably going to get a secondhand wheelchair to use on bad fatigue and pain days.
#RheumatoidArthritis #Fibromyalgia #ChronicPain #Mobilityaid