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    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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    Using A Mobility Aid At A Young Age (and how I'm gaining confidence in using mine)

    When I was diagnosed with FND last year. I hadn't experienced too many symptoms that impared my mobility. I had wanted to get a cane mainly for my chronic leg pain, fatigue and occasional leg weakness. After quite a few months I finally got a cane, that was previously my dad's. And as my mobility issues progressed to things, like tremors and a gait dysfunction it became more and more apparent just how often I'd need to use my cane.
    And although I was grateful to have an aid I needed for a year, I couldn't help but feel the internalized ableism. "What if I don't actually need this" " I could probably go with out this, even if my symptoms will flare after" . Since I'm a teenager, I was afraid people would say I'm "too young " to use a cane.
    All of these had prevented me from using my cane until month after I got it. And I had done a few things to ease my anxiety. So without further ado, here are my tips for gaining confidence in your aid

    1. Follow #BabeWithAMobilityAid

    This tag, which can be found on both Instagram and TikTok is full of beautiful and confident people showing of their mobility aids, and being proud of them.

    2. Fake it till you make it

    This tip, I got from @The.annegirl on Instagram. Her advice, is to fake your confidence in public while using your aid. Eventually you'll realize you aren't faking it anymore.

    3. Decorate your aids

    I personally have found that decorating my cane, has made it so that it feels much more personal and less medicalized, therefore destigmatizing it for me.

    4. Name your aid

    I know this sounds silly, but it personally really helped me. (My cane is named Sally btw)

    5. Take a photoshoot with your aid.

    Taking cute photos of myself always makes me feel more confident. So if I do the same thing while holding my cane I find that the cane makes me feel MORE confident.

    I still deal with anxiety when using my cane, and I be lying if I said I never left it at home, when I needed it. But these tips, have helped me SO much. And I hope they help you too

    #FND #FunctionalNeurologicalDisorder #ChronicIllness #hiddendisability #MobilityAids

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    Neutral/Friendly Phrasing

    Hello friends who use mobility aids! I know the phrase/hashtag#babewithamobility #BabeWithAMobilityAid has become popular and I LOVE it! But I'm wondering if there are any other phrases and/or hashtags out there specifically concerning the disability community or people who use mobility aids that you all love? How do guys feel about the word babe being used? I want to use this phrase as a refrain in a book and I want to be as inclusive as possible. Thanks! #MobilityAids #Positivity #Inclusive #Disability

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    The reality of living with POTS

    The reality of living with POTS.

    What is it? Postural Orthostatic Tachycardia Syndrome.

    It causes tachycardia and orthostatic hypotension. 30% of people with POTS experience syncope (fainting).

    I experience fainting episodes up to 100 - 150 times per day.

    Why? I have Ehlers Danlos Syndrome. It's a rare degenerative condition.

    What does this mean? It’s a connective tissue disorder due to a faulty gene which impacts collagen production.

    Think of collagen as glue for the body. Our body is held together by it.

    EDS impacts your joints, muscles, organs and bodily functions. It causes weakness, dislocations and instability.

    Unfortunately, the blood vessels in my legs are too loose to send blood back to my heart. My blood pressure drops, tachycardia starts and my heart signals panic to the brain. This causes fainting.

    I also have Dysautonomia. It is essentially the dysfunction of the autonomic nervous system. It’s usually caused by damage to the vagus nerve.

    The autonomic nervous system regulates bodily functions. It controls heart rate, blood pressure and respiration. The parasympathetic and sympathetic nervous system are responsible for processes such as rest, digestion, fight or flight responses.

    If you have Dysautonomia and POTS, your nervous system cannot regulate these processes anymore.

    Here are some symptoms:

    * Near syncope

    * Migraines/headaches

    * Gastrointestinal issues

    * Nausea

    * Insomnia

    * Joint/muscle pain

    * Muscle weakness

    * Anxiety

    * Tremulousness

    * Menstrual irregularities

    * Frequent urination

    * Cognitive impairment

    * Visual blurring or tunnelling

    * Chest pain

    * Inability to regulate temperature

    * Heart palpitations

    * Shortness of breath

    * Excessive fatigue (Chronic Fatigue Syndrome)

    * Exercise intolerance

    * Severe dizziness

    * Severe thirst and dehydration

    * Adrenaline surges

    It cannot be cured. A few organisations are researching these conditions to help find treatments to manage symptoms. Sadly, for patients, it is not well known medically.

    The community isn’t aware of how to support people living with these debilitating conditions.

    We often need mobility aids, cooling aids, IV infusions, compression stockings and garments, medication, oral hydration solutions, and access to chairs or seats.

    This condition is debilitating, and it can feel impossible to navigate. We need support from our family, friends and community. We also deserve the correct support from medical facilities, and to have access to disability services and funds to be able to live through it.

    Awareness matters.

    #EDS #EhlersDanlosSyndrome #POTS #AccessMatters #disabilityawareness #BabeWithAMobilityAid #HospitalLife #AmbulantWheelchairUsersExist