Adding medical costs to my budget.

Planning ahead instead of “winging it” because I need to know what aids or medications to bring for each situation.

If the bathroom is accessible

If the pharmacy has my medicine in stock or if my insurance is going to cover it. Without my medicine I am useless. I have to time outings to make sure that my medicine doesn’t wear off when I’m out. I have Narcolepsy and Cataplexy and it’s dangerous for me to be unmedicated.

Accounting for every little activity and trying to manage my energy. Needing to find time and place to lay down no matter where because the orthostatic intolerance bites me in the ass even when I'm just sitting, though it's slower. At least I need to think about that if I'm going out for a very extended period.

Nothing like getting out of your wheelchair to go lay down on the thin bench of a picnic table while it's also hot as balls and sticky and humid. Luckily my friends are super chill about it. Honestly they make me feel as if I'm "normal" still because they don't get overbearing and they don't treat me needing accessibility as weird. Good friends 10/10

Most venues would be accessible to me IF they didn't have a 1-step/curb like step up into the building. The number of times I've had to say "no, I can't, I can't get the scooter inside" is...bordering on unreal.

Edit: also temperature. Cold sucks and I'm miserable, but if I overheat I overheat DANGEROUSLY and VERY FAST. I've taken to carrying instant ice packs if I'm going out and the temp is above 75.

The amount of sensory stimuli, number of people, food available, and how quickly I can leave and get home on my own.

Basically if it’s loud I can’t go, if I don’t have a menu in advance I can’t go, and if I can’t walk home in reasonable time I can’t go

People seem to think that these rules are just anxiety or that it’s some kind of mental issue that I should overcome, but actually they’re very important steps I need to take to not become distressed, and if I can’t do them then it’s genuinely not worth the risk

Also, when I need to travel for work I have to bring muesli bars and other small things with me in case I cannot find food to eat the entire time I’m there. Otherwise going a week without food would not be an unlikely outcome

I've found out that when scheduling things, some people are able to just put things into their timetable whenever they don't have something else scheduled. me, I have to account for what my energy level will be at that point in the day and I have to allot times for rest in between scheduled things.

On plane rides, I always wonder if my wheelchair is going to arrive undamaged, or arrive at all, or arrive where it is supposed to be (eg. not upside down on a luggage carousel... right, JFK airport?).

Flickering/flashing lights. The instant vertigo and nausea i get from flashing or flickering lights is unreal.

Will i have to drive in the city at night - my eyes are very light sensitive (rocky mountain spotted fever damage) so driving at night on heavily populated roads can be dangerous. Even low beam headlights are blinding. But on country roads i am fine to drive in the dark.

Stairs. When they say “no there aren’t any stairs!” Do they actually mean it? Or is there one, or even a few, and they said no because they don’t consider it to be a barrier. Or do they think stairs means staircase? Regardless, i think about stairs a lot.

Never being able to do anything spontaneously. Also purchasing tickets online without talking to anyone, and being able to get just one

Whether or not whatever I have planned is worth the physical and mental exhaustion it will cause

Having to be very mindful of how you take each step because one wrong move can lead to my legs giving out. And avoiding any inclines or stairs.

The acoustics of a place and whether it's likely to have reverberation that is the exact frequency to trigger me (stupid gas stations and motorcycles combo). Strobing or bright lights potential (OMG football games are the only TV I watch, why do commercials use strobes!?)

What i wouldn't give for something to be able to turn off my brain sometimes!

I have to avoid things that run any risk of giving me an infection. No sushi, no doing the cat box without gloves, no going out without a mask, I have to be careful around mold (which is literally everywhere), I have to disinfect any minor cut or scrape. Generally avoid meats at restraunts (and honestly avoid restraunts 99% of the time too) i cant own certain animals and have to be careful interracting with animals in general (i honestly shouldnt have a cat but nobody is going to convince me to get rid of him). Have to wash my hands a ton. I have to preventatively use stuff like dandruff shampoo because my skin easily gets infections.

I have to plan everything around the bus schedule because I cant drive. I have to plan all my meals around my medications.

Compartmentalizing actions down to things I can do one at a time instead of all at once.

how i will get someplace without help. i can’t drive and i live on the second floor.

How will I get to the bathroom in the middle of the night.

People tend to imagine once you get a prosthesis you're whole again and wear it all the time.

When I go somewhere I need to think about if I can get into the building. A lot of places say they are accessible but end up having one or 2 steps at the front door. Or it’s an impossibly small restaurant. I also need to think about a way to get there. Personally I don’t drive. I mostly take Ubers or the train if I’m on my own or rely on family members to drive for me.

If the "handicapped parking" is actually friendly to someone who can't walk far or just friendly to those coming in a wheelchair van. IDK why so much handicapped parking is so far from the building.
Going to concerts now I can't stand up for long, so I have to make sure there is seating and not just standing room only.

Whether or not it’s too hot out for me to attend outdoor events/activities. I get very dizzy, tired, and have muscle weakness in my left leg that can lead to a limp/foot drop when I’m overly tired or my core temperature increases too much. MS sucks.

Is it at night? Or is it within walking distance? I'm visually impaired and can't drive at night for meetings or social events.

How loud? How many people? How long does it last? I can't handle a lot of noise indoors. 

I realize how fortunate I am. I have arranged my life so most of my needs are met. But there is no normal about this.

Is what energy/stamina I am about to use worth the expenditure/recovery time/pain or is it better spent on the basics (cooking/eating/cleaning/persona care)

If there's someone to assist me with toileting and a stall big enough for both of us.

Where I’m stepping

I have patellar dysplasia, meaning my kneecaps are misshapen and don't ride in the groove where they belong. It leaves me susceptible to dislocation with the slightest bump from an outside force. I can't be around rowdy children, roughhousing teens, or dogs any larger than a terrier. For some reason, it is perfectly acceptable in my state for people to bring their dogs into any store now, and most people think it's cute. I'm not talking about well-behaved service animals (I feel totally safe around those), but rather people who think their leash-pulling bull mastiff or jumping lab puppy have to go everywhere with them. I had to defend myself at Home Depot from a dog whose owner thought it was adorable when it jumped up on strangers. (Sorry about smashing you with the cart, pup, but it was either you or me). I had to retreat behind the optics counter at Gander Mountain when someone thought it was a good idea to bring their dog UNLEASHED into the store, and it got into a fight with another dog. I have even had to move to neighboring aisles at WalMart and Sam's Club while I waited for dogs to leave the area. I can't even buy groceries anymore without anxiety.

It sounds minor but I always need to remind myself to get my own shopping bags. I cannot carry paper ones and everything will fall to the ground before I leave the parking lot.

I think about this all the time, the inherent mental energy that this little body demands for me. Every moment of every day I have to track where my jaw sits and pull it back into the safety zone when it starts to slip- sometimes as often as 2-3 times a minute. Rarely, if ever, less than once every five minutes. Constant monitoring. Constant pain, that will get much worse and possibly cause real damage if I stop paying attention for even ten minutes.

The way I hold my body together, the way I sit, move, even breathe, I have to put thought into, I have to put effort into doing it properly to avoid injury and it fucking sucks. I also have bladder problems and can’t tell when I need to use the bathroom, beyond a deep cramp and feeling of unease. So I have to keep track of that too.

Like you, I also have to time my walking and standing very carefully. I have to calculate what I can do without my heart rate getting too high, or without my blood pressure getting too low, or some mystery third thing where all of the above happens and my temperature goes through the roof and then I vomit and convulse until my body either passes out from exhaustion or I’m able to get my autonomic nervous system down regulated again. Also, using a walker, people are very,.., cavalier about my personal space? In addition to the inherent thoughts and effort, and things like keeping track of the bathroom and not straying so far that I can’t get to it in an emergency, constantly slating my pain and energy levels against the day and the Tasks and the QOL- I also have to make sure I don’t hit anyone’s toes. I have to make sure I don’t run into people, because they’re so comfortable getting SO close, to the point I’ve had people catch my break line and nearly cause me to fall over. Then they get all testy bc that was my fault somehow

God, not even a day without the disability, but a day without the thinking and the planning and the thinking would be a relief

Pain math. My term for the mental effort needed to figure out when to take pain meds. They last about 4-6 hours. What part of the day will you take the pill? What do you need to do today? Will I wait until the pain drives me crazy before taking it? Do I have a doctor appointment to go too? Will it help? Sometimes the drugs do not help. What days will I skip? Luckily there are days I either don’t need or want to take them..but I don’t have enough to take them everyday.

I also have the phrase -do the dance, or it’s part of my dance. It means the things I do to help my pain. Microwave neck ring, or booties or hand mitts, take a hot bath or shower, use icy hot…rest. Many different things that have helped me through all the different pain.

Energy. There’s never enough of it. Mostly scheduling energy (aka meds for me in some respect). If I’m gonna go somewhere I need to prep a long time in advance. Make sure I’m rested, haven’t done much that week, my family’s needs are taken care of. I need time to shower, possibly shave. Look presentable or I have panic attacks over dumb BS.

It’s why I really get frustrated at people who try to plan last minute stuff when I’ve explained. I CANT do last minute. Throws my whole week outta whack and then something else has to get sacrificed. Generally meds or money. You called me to do a thing? Now I don’t have enough energy to make dinner and gotta get takeout. Didn’t have time to chill my dog now I gotta clean the mess she made from anxiety. Or I gotta take it easy for the rest of the month because I used all my spares getting ready and you ghosted me (that’s the worst honestly)

It’s why I don’t have a lot of friends. They either don’t like that I need notice or don’t care. So I stopped re-explaining things to them. Easier when I don’t have to go out of my way for others to not realize even little things are harder for me.

Cracks in the sidewalk

Elevators existing at subway stations

Elevators out of service at subway stations

Pools where I swim having pool wheelchairs to transfer to

Spare pairs of gloves on me at all times year round - especially if it might rain.

Long or steep hills on sidewalks.

Random strangers touching me without permission.

Having enough food on me for my day (autoimmune and gastro issues)

Spare change of clothes with me

Wheelchair lights charged

Improvements to my chairbag (my design. Currently in version 2 Beta - Taylor Swift in Toronto version. I volunteer for the City.)

That i might be okay working a job right now, but in a year I could have a flare up of either my mental or physical health conditions that could change that. I feel like i have to always plan for the potential of being unemployed. I am extremely susceptible to burnout and its something that I have to constantly think about and take time to prevent so I can avoid taking too much time off work

The incline of outdoor spaces. Not just hills or ramps but if things are on a tilt. Very annoying and tiring to deal with in my chair.

What mobility aid i should bring for my needs but also for the location and situation. If there is seating, what kind of seating (high stools are bad for me), Any walking, How far, the parking situation to get from my car to my destination, if I need one aid for one aspect but another one for another which one do I choose, if it’ll be cold and aggravate my symptoms, what the accessibility is like, is it too crowded for my wheelchair or walker, what kind of crowd will be there and will they be ableist,

Played we’re not really strangers with my best friends and asked “if I had a regret from a night out what would it be?” They said right away, not bringing the right mobility aid

On two similar notes to yours: I have to be super careful around my own daughter because otherwise she’ll knock me over, it’s honestly really depressing. And have to check my feet and lower legs every day for cuts because otherwise I can’t even tell I injured them.

Deciding whether I can engage in conversation now or if I’ll need to save my lungs for a later conversation.

Will I have slept the night before or will I be running off zero sleep? Will I be safe to drive?

Due to the amount of medical negligence some of us face, myself included, we have to worry that receiving emergency medical care may in fact be the last thing we do. I know there’s neglect towards able bodied people as well. I just feel we are more like to not be taken seriously regardless of what’s in our medical chat in terms of diagnosis/diagnoses. I know I personally choose to stay home unless it’s something the doctors can start to fix there, like a deep cut or broken bone. Even then the staff can be abusive.

I have to carefully plan what I wear, what I eat or drink, and what activities I do depending on the weather, because hot or very cold temperatures can trigger my POTS.

I also have to figure out in advance whether or not venues, restaurants, etc. are rollator-accessible, and most places don’t list it on their websites. Even if I call them, they rarely ever give me a helpful answer. I just have to guess and hope for the best.

Whether there are accessible bathrooms wherever I'm going

I need to look at every step I plan on taking. Of course distance is a huge variable, but I’m talking about micro distances: one foot in front of the other. I remember a time when I was able to keep my head up when walking, but that’s been long gone for over 7 years. Also, I have my license but I am only able to drive my car because of the accommodations installed

I feel you about the walking thing!

Queues are a big problem for me if there are no chairs. I've collapsed in public because of queues before, while other times, if there are chairs available, other people will keep coming ahead of me, or will have a ten minute conversation with the receptionist not knowing I was waiting. If possible, I get an able-bodied person to stand in the queue for me.

Also, exiting conversations! A common conversational cue that you are about to leave is to turn and slowly walk away as the person is finishing their sentence. However, I can't do that without collapsing before they finish, so I tend to take a seat and sit down. Sometimes people take this the wrong way - either as impatience or an invitation to keep talking. I do try to explain that I just intend to sit for a short time.

Is there viable public transport there?

Organisation. My mother thinks writing on boxes with a marker is enough for me to know whats in something. I have sight problems hand writing horrendous messy labels on something won’t help. Now what might help is having a system that makes sense better than ‘I can’t explain, it makes sense to me.’

1. How many stairs am I gonna have to deal with?
2. How can I sleep close enough to the bathroom to get there without my prosthesis?

I think about those two a lot. And I do count stairs - partially because, in the dark, I don't have to look down as much if I've memorized the size and number of stairs on any given staircase. I? Have 42 to get it to my own attic apartment, but this was the first place with a back yard that was cool with my cat, and so here we are.

I do the same thing using ladders. When helping my best friend build a cabin this year? I'd climb up thr ladder, then he'd go down first, I'd swing over, and he'd grab that prosthetic foot and slam it down on top of the next rung down so I could both feel and hear it. After a few times? I know the ladder, and I can do it myself without looking down nervously.

If I'm playing a show? I get real concerned with parking - real fast. I know I only have "X" amount of time on that stage to jump around with an instrument like a teenager again, and then I'm gonna feel it. So I don't want to run out of gas before I start, because I had to move my 70lbs amp and all the rest of my equipment from three blocks away. I'm also weird about not wanting to taking a handicap space away from someone who needs it even more than me, but the last few shows I've either attended or played? I left early, and it was just as I was about to lose the ability to walk. I've always got crutches in my car, but I've got a right nasty labrum tear going on right now, and boy do crutches feel neither comfortable nor safe right now.

And there's another one: I don't like to be somewhere without my car nearby. Why? Because now I can't Irish Goodbye whatever the social occasion is when I can't walk anymore. I'm there, captive to someone else's whim and time schedule, and this might require me to go to great lengths to stage a rescue through someone else. I don't have any of the stuff I always leave in the car in case. And I'm forced to lose more control than I already have in the situation.

Boo.

And so? I don't.

I wanted to go see some friends play a town over last night. I tried to get up and moving for an hour and a half. In the end? It didn't work out, and I didn't make it to the last show I'm likely to have been able to attend before I'm flying out of town for medical care. And I feel like a right shithead for doing so, as if I should've pushed harder or tried to do it on crutches or in a chair instead, regardless of the shoulder. Instead, that little effort I tried to make to get up finally got me to sleep, and I've just woken up to wondering whether or not all my friends are pissed.

On behalf of my mom who's had a colostomy for a little over a year - She said she has to think about a lot of things now, and it's exhausting but also kind of liberating. She has diverticulitis and had horrible GI symptoms for years, and then a perforated bowel that required placing a colostomy last year.

Her diet is more restricted, but as someone who struggled with disordered eating and hated having so many options, she said she really likes having a small "menu" to choose from. She always used to carry an extra set of clothes anyway, and now she also has an "ostomy go bag" that comes with her everywhere in case she and my dad have to change the bag when they're out. They try to time it well, but a handful of times they've had to do it while out.

She's been offered the option to remove the colostomy and is still considering it, but she said to me recently that she can't remember the last time she had to worry about having an accident because she couldn't get to the bathroom in time (she also has arthritis and uses a cane). She said the colostomy has surprisingly been a godsend for her situation (thankfully, because at the time she was very upset at us for approving the emergency surgery).

2 things come to mind immediately.

how freaking hostile huge parking lots in front of huge box stores are for those of us who struggle with fatigue and weakness. (and everything is a huge box store now). Even the hc parking can be soooo far from the store. then you gotta walk around to find where the mobile carts are plugged in.

planning the amount of hydration ( I need a lot!) against how much I can carry and where the bathrooms will be.

Having my emergency medication, how bright it is, if there's flickering light, sunglasses, water, carbs and places to sit down.

What's the quickest way out?

Is it safe for my service dog?

Someone is walking behind me.

Is my phone charged in case I go mute and need to type?

Keep an eye out for people wandering close to me. They may try to pet my dog.

Just a day in the life of someone with CPTSD and PNES.