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    Community Voices
    Community Voices

    Getting a wheelchair carrier for my car

    I am an ambulatory wheelchair user. I use a wheelchair due to fatigue— which means when I use my manual wheelchair, someone has to push it. I am lucky to have access both to multiple manual wheelchairs and to a mobility scooter (which belonged to my grandma). I also have a very supportive family who is willing to push my wheelchair for me. I still prefer the independence of using the mobility scooter.

    Today, I am looking at trailer hitch attachments to haul the mobility scooter on my car. Last year at this time, I was offered help getting one, but turned it down as I didn’t want to take that step yet. I didn’t think I would need it that long.

    Yet here I am.

    I’m both excited to have the ability to take my mobility scooter with me (and the independence that gives me) and coming to terms with the fact this isn’t a short term thing anymore.

    Trying to focus on the positives here. It’s not always as easy as it sounds.

    #ChronicIllness #MentalHealth #Disability #Anxiety #SocialAnxiety #MyalgicEncephalomyelitis
    #Fibromyaliga #OrthostaticHypotension #PosturalOrthostaticTachycardiaSyndrome #mobilitydevice #AmbulatoryWheelchairUser #ComingToTermsWithChronicIllness

    7 people are talking about this
    Community Voices

    When I tell you ‘I’m sick’, it means I’ve had a flare recently and it hit me hard

    When I say ‘I’m fine’, I mean ‘I’m not, but I don’t want to talk about it’

    When I assure you I’m okay, I mean ‘I don’t want to worry you’

    Because I am not fine. I am not okay.

    I’m chronically ill.

    Chronic illness speaks of hospital beds and IV bags floating on their coat rack, saline solution dripping downhill and into my arms,

    But that is not what my chronic illness looks like.

    My chronic illness is showers taken sitting down, and water that cannot be too warm.

    My chronic illness means no door is fully shut, so someone can hear me when I fall.

    My chronic illness means my bedroom is now merely the room i sleep in at night, because it’s too exhausting to go up and down stairs more than once a day.

    My chronic illness is doing ridiculous abdominal exercises before i can stand up without falling back down.

    My chronic illness is salty snacks in every pocket of every bag i carry, and bottles of water with electrolyte powder clouding their clarity.

    My chronic illness is four different medicine sorters, each with a different combination and permutation of pills to all try and do the same thing-

    To help me.

    Do they?

    My chronic illness is called POTS.

    Postural orthostatic tachycardia syndrome

    A form of dysautonomia that means my body doesn’t know how to function properly

    My chronic illness means no I don’t want your pity, but yes I need an arm to lean on sometimes

    My chronic illness means no I don’t want you to have to be a caretaker, but yes I need you to know my symptoms so you can tell if I need help.

    My chronic illness means I’m sorry I’m such a burden

    My chronic illness means yes I have to use a wheelchair sometimes and no I’m not okay but yes I can walk sometimes because yes, ambulatory wheelchair users do exist.

    My chronic illness means I’m sick and tired of being sick and tired, of seeing the nurse more than my friends, of going to doctors appointments more often than school, of sitting on my couch, unable and unwilling to get up only to fall down again.
    #PosturalOrthostaticTachycardiaSyndrome #Spoonie #MentalHealth #AmbulatoryWheelchairUser

    5 people are talking about this
    Community Voices

    Mobility Aids/Devices/Wheelchairs

    <p>Mobility Aids/Devices/Wheelchairs</p>
    Community Voices

    Some Wheelchair Resources

    A year ago, I bought an electric Wheelchair by doing a GoFundMe. I put together some resources to help other people when looking at electric wheelchairs. I hope it helps! I bought a lightweight, foldable chair, but some of the questions I suggest thinking about are relevant when looking at other chairs too. It was hard to accept I needed one at first, but I am so grateful and happy to have it now. I am ambulatory, but have ME and POTS, and it makes a huge difference in my functioning.

    #AmbulatoryWheelchairUser #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #ChronicFatigue
    #Wheelchair #Wheelchairs #Disabililty #resources #MyalgicEncephalomyelitis

    Community Voices

    Inaccessibility #AmbulatoryWheelchairUser

    I'm frustrated about the inaccessibility at my university. This school has a building with no ramp to get inside or elevator once inside. In a different building, my electric wheelchair does not fit in the elevator so I am forced to leave it downstairs and make my way upstairs to my class. My electric wheelchair is not big at all and should have no problems fitting inside normally sized elevators, but this one is small an narrow. It gets annoying on days that I need my wheelchair for the entire day rather than just distances.

    Does anyone else have similar experiences?

    #CMT #CharcotMarieToothDisease #ChronicPain #ChronicIllness #tired #Fatigue #frustrated #Wheelchair

    6 people are talking about this