Constant pain

[Eisa]

I HATE being in so much pain all the time. My feet hurt. I discovered today that I cannot even stand up barefoot for...what, 20 minutes or so? I was talking to my aunt. I was even leaning against the frigging wall. I had to sit down or I would have gotten sick and felt even worse. I hate my headaches. Fucking awful headaches. I hate how my back hurts. I hate how my neck hurts when I sit too long. I hate how my ass hurts. I hate how my hips and knees and legs hurt. I hate how my wrists hurt. I hate how my tummy doesn't like when I eat...or don't eat, for that matter.

I AM TOO FUCKING YOUNG FOR THIS SHIT. Seriously. I'm only 23. I keep wanting sometimes to use one of the electric carts or the mall/library wheelchair things and yet I don't dare because I feel like I'll be judged and told I can't POSSIBLY be disabled or in that much pain because I'm so young. I've been disabled since I was born.

But the pain is getting worse. And pissing me off. And I want it to GTFO already. Please?

[/whiny]

[Andara Bledin]

My only advice for now is this: Use the carts when you feel the need. If other people judge you, fuck 'em. They have no idea how good they have it.

*hugs*

^-.-^

[SkullKing]

I agree, if they complain say, I can´t stand for long.

If they say they saw you walking to the cart say: I can´t stand for LONG

and that is it.

Hope you get better

[HYHYBT]

If other people judge you, fuck 'em.

Speaking of ways to get banned from Wal-Mart...

[Ree]

I apologize if I missed it somewhere, but have you been given a diagnosis for this constant pain?

Living with almost 24/7 pain myself, I understand the frustration and despair.
I have learned to shut out the pain in order to cope and function, but it's very exhausting mentally, and there are times when I am just dragging myself to get through the day.

Even though I have become skilled at blocking the pain, sometimes, I will just be sitting and all of a sudden, I become very aware of the fact that I am actually in pain at any given point somewhere in my body.

Sometimes, all we can do is whine, so go ahead.

If you need the scooter to get around with some degree of comfort, go ahead.
That's what they're for.

Don't even worry about what others think.

(That's my biggest issue with some of the threads where people have bitched about seeing others who don't even need scooters using them. Nobody knows another person's circumstances, and we cannot judge another person's pain. The fact that we read those types of threads here and on CS makes us wary of using the tools provided to ease our pain in case someone sees us and judges us. That is why I never begrudge anyone the use of a scooter as long as they use it with respect toward others around them.)

[RootedPhoenix]

If you need the scooter to get around with some degree of comfort, go ahead.
That's what they're for.

Don't even worry about what others think.

Ree's right. Sometimes, people will assume far too much. There's too many invisible/hard-to-see disabilities out there to really know who doesn't need something.

I've used the carts before. Glorious things. It means I can get my shopping done without tears and extra pain.

[BlaqueKatt]

I keep wanting sometimes to use one of the electric carts or the mall/library wheelchair things and yet I don't dare because I feel like I'll be judged and told I can't POSSIBLY be disabled or in that much pain because I'm so young.

who cares? If it really bothers you get one of these shirts"my disabling chronic illness is more real than your imaginary medical expertise"

[Andara Bledin]

who cares? If it really bothers you get one of these shirts"my disabling chronic illness is more real than your imaginary medical expertise"

No, not the shirt. Get the tote. Use it to carry groceries. You won't have to dress specifically for shopping trips that way.

^-.-^

[Ginger Tea]

My dad had a Tshirt that was a play on "I got ... who could ask for anything more" iir a Rodgers and Hammerstine song, but I could be wrong, it went "I got Chronic Lymphicitic Lukiemia ... Kinda doesn't match the tune" or words to that effect. I was only vaguely aware of the song due to the shirt but everyone else who saw it had no bloody idea and those that had heard of Lukeimia had only heard of it via the childrens hospital TV show so just kept on telling him to have a bone marrow transplant not understanding that it doesnt work like that in adults.

I myself have been putting off making a thread about my right foot and since this thread appeared even more hesitant, I posted in another thread (by the OP i think) months ago, but I must stress that my discomfort isnt close to a single percent of anything she's going through.

About 4 months ago I got new work shoes and my right started to hurt in the soles, I originaly put it down to new shoes breaking them in but this never went away and even with foamy insoles its only a short term fix till they end up squished flat after 5 hours on my feet, as my left is shorter (and thiner too) I have an insole shoe raise so that explains why my left didn't cop for anything.
In my day to day boots nothing seemed to matter and I was still thinking new shoes although 2 months seemed a bit too long, then in May I was visiting my brother and it hurt in normal shoes and barefoot.

Now as the foot is slightly clubbed, there are days when I cannot get the foot all the way down and end up walking on tip toes on that foot and I had enough and went to my GP to get a referal with a specialist, that was weeks ago and people at work say "See your doctor." I did, I'm waiting for them to get me an appointment with someone who can do something about it.

Again I stress, my pain levels are no where near what has been discussed, but some days if I saw the specialist and they tabled amputation, I would stick my foot on the table and say do it now before I change my mind.

[Eisa]

I would love the shirt OR tote bag. That is awesome. I get that a lot. Or people asking, like why are YOU limping? like of course I must have no possible legitimate reason to be limping. And I think literally no one in my age group has ever heard of clubfeet. No one ever knows what it is. Is it that...unique or something?

I have not gotten most of the pain dealt with at all. It might be referred pain or something, I dunno. I just know it hurts!

[Eisa]

Btw 3-day migraines can BLOW ME.

[Ginger Tea]

And I think literally no one in my age group has ever heard of clubfeet. No one ever knows what it is. Is it that...unique or something?

I'm the only person I've met in person who has clubbed feet, although mine is only slightly on the right, the left is fine.

The one leg shorter than the other aspect of my leg issues, I've worked with a few who have similar problems, none have had insoles or shoe raises and one is now using a crutch to get around and had pelvis surgery.
Another had it so bad the only way she could be level was if she put the short leg on tip toes, the only shoe option that would work would be to wear one platform shoe and one normal one, don't think that would happen.

To explain what was going on to other people, I used to ask them to walk around with just one shoe on and see how it felt, then imagine 16 years of that gradually getting worse.
Yes I was 15ish when I found out I had all these things wrong with me as they never affected me till the shorter leg gave me back problems, although I did find it odd that only one leg would hit my school desk in the 4th year.

[Cazzi]

I also have a chronic pain condition which makes standing painful too.. I'm one of the weird folk you see pacing round in circles at the bus stop when the bus is late

I used to worry about what people would think if I sat in a courtesy seat in a shop or station when there were older people around, then I realised tough, *I'm* entitled to use those seats just as much as anyone else with a disability, just because I don't look like I have problems doesn't mean I don't have them!

It does cause a few raised eyebrows at times though when my elderly aunt or mother have gotten out of a seat at say the bus station & offered it to me

[HYHYBT]

I'm the only person I've met in person who has clubbed feet, although mine is only slightly on the right, the left is fine.

The one leg shorter than the other aspect of my leg issues, I've worked with a few who have similar problems, none have had insoles or shoe raises and one is now using a crutch to get around and had pelvis surgery.
Another had it so bad the only way she could be level was if she put the short leg on tip toes, the only shoe option that would work would be to wear one platform shoe and one normal one, don't think that would happen.

To explain what was going on to other people, I used to ask them to walk around with just one shoe on and see how it felt, then imagine 16 years of that gradually getting worse.
Yes I was 15ish when I found out I had all these things wrong with me as they never affected me till the shorter leg gave me back problems, although I did find it odd that only one leg would hit my school desk in the 4th year.

I don't know how you'd go about getting them nowadays, but Grandaddy had a shoe shop and was licensed to make prescription shoes exactly for those sorts of problems. (Much like a pharmacist, he wasn't supposed to *diagnose* what sort of modifications you'd need.)

[Ginger Tea]

For the shoe raise, when I lived oop norf, I used to go to a key cutters/cobblers on the market with the pescription, this limited my shoe options as they would cut the sole off, glue in the raise and put it back on, rendering trainers and some other types useless.
Then they stopped doing this (to avoid litigation and stuff) and I had to go to the hospital and their method was to put the raise on the sole and used a compound similar to a large school rubber (eraser US) and it wore down drastically very early.

Hospital down here would not touch safety shoes which I use for work and at the time of me moving didn't offer insole options, so I had to buy a crap tonne of insoles and pack them in to a good enough level, my outside raise was 2" iir, but the insole one is considerably less, yet the discrepency is the same.