ouch my bones

you do not need to be in constant pain to own a cane.

folding canes have a clasp or band to keep them folded. losing the band is a pain in the ass.

you will get dirty looks

it does not matter what age you are. you will get dirty looks.

you have to hold it in the opposite hand as the disabled leg. this is fortunate, as I am right handed, so i hold it in my left hand to support my right leg.

people will try to steal your cane from you.

when standing still, I hold it in my right hand unless i need to do something right handedly. this does not work as well as i thought it would.

being visibly physically disabled is difficult. having a mobility aid will help with pain and movement, but some people don't get them because visible disability is treated with disgust.

if someone meets you for the first time, and you don't have your cane, then they will like you more, but they will not believe you are actually disabled.

if someone meets you for the first time, and you have your cane, they will not treat you the same.

the majority of other cane and mobility aid users I have met are homeless. I live close to a big city.

People do not want to see you being disabled.

you will not hear of the benefits of using a cane from anyone who does not use a cane.

no one will prepare you for the world of being visibly physically disabled. however bad you think we have it is usually not from the disability at all. I can deal with pain and I can deal with an indisposed left hand.

the hardest part of being disabled is the fact that no one will care until you make them care.

the disabled seats on trains are a suggestion

the disabled seats on buses are a suggestion.

you will have a different experience with using a cane than I have had.

your hand will become tired. you are using it as a leg.

your cane is legally a part of your body. this will not stop some people.

you are not your disability. but it will affect you.

i love you

theres always an invisible someone who has it worse. that person will not be affected or offended by your use of a cane. take the damn ibuprofen. put the folded cane in your bag. ask your friends for help. gd knows they need help sometimes too.

you will have to learn that things will be impossible to you. you may not run as fast anymore. you may not become a skater, like you always wanted to be. you may be left behind when everyone else runs ahead.

you deserve better.

your cane handle gets dirty. wash it.

some days pain is worse. some days you will feel it the moment you wake up.

no one deserves pain. the human condition is not to suffer. we deserve better. we deserve to be loved and not tolerated. we deserve to be seen better than from the corners of eyes. we deserve to be heard better than an afterthought at a meeting.

be quick to care for yourself. I love you.

“just wait until youre my age”

“you young people are so soft now”

“when i was your age i wouldn’t have complained like this”

if your conditions make it hard for you to follow through with plans, you deserve friendship anyways.

if you use equipment like mobility aids, aac, ventilators and oxygen, feeding tubes, insulin pumps, etc, you deserve friendship anyways.

if your conditions make you have to cancel last minute a lot, you deserve friendship anyways. if your conditions make you have to leave early a lot, you deserve friendship anyways.

if you're housebound/bedbound, you deserve friendship anyways.

if you need caregiver support to hang out with friends, you deserve friendship anyways AND you deserve the caregiver support you need to enjoy time with them.

if you have a service dog, you deserve friendship anyways.

if your conditions cause "scary" medical episodes like seizures, fainting, meltdowns and shutdowns, etc, you deserve friendship anyways.

You’re doing fine. It’s okay.

Do what you can when you can and that’s fine.

But also, if there’s someone in your life that can help, please don’t let shame or embarrassment prevent you from seeking that help. If you genuinely can’t keep up with certain tasks, please consider asking a trusted person for assistance.

And don’t listen to anyone disparaging you. They don’t know your life. They aren’t in your shoes. They can’t understand the difficulties you face. And ultimately, your actions don’t effect them.

"at least you can still walk"

"look at everything your grandpa still does and hes in a wheelchair"

and now that we are truly disabled, barely able to walk, pelvis wrecked, we still diminish our pain

"at least im not in a wheelchair"

and asking for help with basic tasks, whew its so hard.

thank you for this post.

if you are in pain within minutes or seconds, that is not normal. that is a Symptom. poke your doctor into finding out what it is or connect with disabled and chronic pain groups.

if you are in extreme pain, not just "ugh my feet ache" pain but "i am going to pass out" pain, that is not normal. that is a Symptom. poke your doctor into finding out what it is or connect with disabled and chronic pain groups.

I mean, I can walk just fine, but standing in one spot for like 15 to 20 minutes will leave me in pain for days.

So that didn’t help

Meanwhile document the actual effect the pain/etc has on your life. Document how it impacts your ability to cook; your ability to clean; your ability to clean yourself; your ability to sleep; your ability to work; document all attempts to be more active and how the pain interferes with them. If you have to do something other than just go stand in the kitchen for ~1hr to cook a meal, that's something to write down; if you have to choose not to have a shower because it'll hurt, write that down. If the pain prevents you from going for a walk, write that down.

Every single time you make a decision about what you're doing based on the pain, you document that; every time you have to endure the pain for a necessary activity which then impacts what ELSE you can do, write that down too, with a direct connection.

(Warning: this will probably be depressing as all fuck and you will probably hate it. You are almost certainly ignoring the impact of pain on you way more than you think you are, and having to face it will feel bad in the short run. Very bad.)

And then you bring it either to your new doctor or if you MUST, to your current doctor, and you say: this is how the pain currently affects my quality of life. This is what I would be doing if I weren't prevented from doing it because of the pain.

Say that you would like to find the reason for this pain and you would like them to order relevant diagnostic tests. If they refuse, or hem and haw, ask them to document clearly in your records that you requested this and both that they refuse and their reasons for refusing.

If you must deal with the same doctor, document the concerns you have with the weight-loss drugs, and ask your doctor to be explicit about why she thinks that these risks are worth something that does not directly address your actual concerns. Ask why this is their first line treatment for the rest of what you've described, and why they are more concerned with pushing an overprescribed treatment than actually investigating the cause of your pain and addressing it appropriately based on an evidence-based diagnosis.