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One foot forward

The doctor appointment went well Monday. He didn't have much information about it due to it being so rare and unfortunately understudied
He did try his best to explain it better and take more notes. He will send the scans to my new neurologist and hopefully he will have a bit more info.
His main concern for the most part are the seizures. He, like us want them better under control. No one can really put a label to what they are I have been told NES and I've been told Epilepsy. I know that colpocephaly can cause seizures among other things. It's been a frustrating journey since December 2020 when they first started.

On the upside my parents are glad that I have a name for what's going on with me. When I told one of my parents they said I had your mom look it up and this is definitely what was going on with you growing up but nobody had a name for it.

It was rough growing up in the 90s-early 2000s with some of the issues I was dealing with but I made it through. Thanks to the support I had growing up with school teachers and my parents trying probably pouring over books and phone calls trying to figure out how to help me.

I'm hoping here on out it'll be a bit more smoother sailing on trying to figure this out more. I know life has speed bumps and every day I have to adjust and accommodate to my needs but I just need to put one foot forward even if that means wheeling that foot forward too.

#Spoonie #Colpocephaly #SeizureDisorder #AmbulatoryWheelchairUser

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Accepting an electric wheelchair

I recently purchased a Golden Technologies Literider Envy green power chair. Since I use various mobility aids (been using the walker pretty often), so it has been getting very hard to get around large places with just a walker. I attended an air show that involved a ton of walking, so my dad had me take my power chair. At first, I was embarrassed because I viewed wheelchairs are for those who are paralyzed, but when I saw ambulatory users my embarrassment was gone and I received compliments on my new chair. It helps me get around with less pain, less fatigue and my symptoms were not as bad. I can say that I accept my new mobility aid because it is a tool to help me get around. And I can enjoy events without paying the price later.

#Disability #Wheelchair #polyarthralgia #Fibromyalgia #AmbulatoryWheelchairUser #HypermobilitySyndrome #dynamicallydisabled #MobilityAids #Acceptance


Finally a wheelchair!

My first wheelchair arrived today and I'm so thrilled. I want to scream it into the world, because it will make my life so much easier and means less pain. I just wanted to share this #happymoment 🤩
#Wheelchair #AmbulatoryWheelchairUser #WheelchairUser #happy #Disabled #Disability #ChronicIllness #chronicallyill #ChronicPain #teenager #disabledteenager

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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


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

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Mobility Aids/Devices/Wheelchairs

1). Mind your business. 2). Stay in your lanes. 3). No one “asked” your opinions. 4). STFU 5). Learn boundaries and consider finding a hobby. 6). Ableism and lack of knowledge. #MobilityAids #mobilitydevices #AmbulatoryWheelchairUser #boundaries #ToxicPeople #Ableism #Mindyourbusiness #Disability #Disabled #SpoonieProblems #ChronicIllness #Disabilities


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


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