ltbeauti
Distinguished member
- Joined
- Feb 22, 2011
- Messages
- 215
- Reason
- PALS
- Diagnosis
- 04/2008
- Country
- US
- State
- VA
- City
- Chester
This was written by a PALS. Posted with her permission. I thought a lot of people could identify and benefit from it.
ALS Venting
by Lisa Henk on Wednesday, June 8, 2011 at 9:50pm ·
I’m going to preface this note with a disclaimer that I’m not posting this to hurt anyone’s feelings or make a dig at them.* I’m just trying to let people know what I’m going thru.*
*
When I ask you to fix the waistband of my pants, I don’t mean pull up my pants to my neck!* You might wear your pants pulled up to your boobs, but I don’t—you have just given me a massive wedgy!* Now will you pull my panties out of my butt?!
*
When I ask you to put toothpaste on my brush, don’t give me a mere 1/16th of an inch of toothpaste and say that’s plenty and ½ an hour later say, ooo your breath stinks!* OF COURSE IT DOES----give me some toothpaste!* I have bad hands, my control isn’t good; if I want an inch of toothpaste, give it to me!
*
When I ask you to twist up my deodorant, don’t twist up a tiny smear of it and say that’s enough.* If I want to paint my entire armpit white it’s my right!* I do not want to smell—I’m sick but hygienic!
*
If I ask you to help me color my hair, don’t say, oh it doesn’t need it!*
*
If I say I want a laptop, don’t say no, you don’t—you want an Ipad.
*
If I say I have a flowerbox and want rose moss, don’t say I’ll bring you geraniums!
*
Sales people:* I am blessed with Keith who will go get special items for me so when he comes in with a note that says super skinny serum or desert sun eye shadow and bamboo pink lipstick; pleasepleaseplease don’t ask him if I need volumizing mousse or eye liner or lip liner too!* You scare him!* Really, you do!
*
If you sit by me at a table at a public event and happen to brush up against my leg, please don’t announce at the top of your lungs that my legs are prickly!* I know they are—I do my best with an electric razor.* I cannot use a good disposable razor anymore—last time I tried, I looked like I had been attacked by a feral cat!
*
If you want me to go somewhere with you, don’t say I’ll be there in 45 minutes and be surprised I’m not ready!* Or help me get ready and then announce in public you had to put my bra on me!*
*
If you come see me at my house, be there for me—don’t come in and make comments about the bathroom sink being dirty, laundry laying around or the trashcan being full.*
*
I’m doing the best I can………….
*
The loss of independence is overwhelming some days………..
*
However, I still have opinions, thoughts, feelings and desires.*
I will NEVER go anywhere in public in my pajamas, so don’t expect me to!* You wouldn’t, would you?
*
Same goes for a bra—I may hate them but………..I’ll never go without in public.*
*
Don’t say to me oh don’t worry about it for dirty clothes, mismatched clothes, undone hair, un-brushed teeth, or no makeup when you want me to go with you last minute.*
*
Just think about it……..would you go that way?
*
I really feel for kids 2 and under….no wonder they have temper tantrums!* Their parents are dressing them—goofy hats, goofy pacifiers, goofy outfits!*
*
I have an amazing group of people who love me, help me and take care of me and I wouldn’t still be in my place without them……..so I feel a bit petty in writing this; but my feelings are my feelings and stronger with the frustration of the progression of this disease………..
*
Keep the Faith!*
Love,
Lisa
ALS Venting
by Lisa Henk on Wednesday, June 8, 2011 at 9:50pm ·
I’m going to preface this note with a disclaimer that I’m not posting this to hurt anyone’s feelings or make a dig at them.* I’m just trying to let people know what I’m going thru.*
*
When I ask you to fix the waistband of my pants, I don’t mean pull up my pants to my neck!* You might wear your pants pulled up to your boobs, but I don’t—you have just given me a massive wedgy!* Now will you pull my panties out of my butt?!
*
When I ask you to put toothpaste on my brush, don’t give me a mere 1/16th of an inch of toothpaste and say that’s plenty and ½ an hour later say, ooo your breath stinks!* OF COURSE IT DOES----give me some toothpaste!* I have bad hands, my control isn’t good; if I want an inch of toothpaste, give it to me!
*
When I ask you to twist up my deodorant, don’t twist up a tiny smear of it and say that’s enough.* If I want to paint my entire armpit white it’s my right!* I do not want to smell—I’m sick but hygienic!
*
If I ask you to help me color my hair, don’t say, oh it doesn’t need it!*
*
If I say I want a laptop, don’t say no, you don’t—you want an Ipad.
*
If I say I have a flowerbox and want rose moss, don’t say I’ll bring you geraniums!
*
Sales people:* I am blessed with Keith who will go get special items for me so when he comes in with a note that says super skinny serum or desert sun eye shadow and bamboo pink lipstick; pleasepleaseplease don’t ask him if I need volumizing mousse or eye liner or lip liner too!* You scare him!* Really, you do!
*
If you sit by me at a table at a public event and happen to brush up against my leg, please don’t announce at the top of your lungs that my legs are prickly!* I know they are—I do my best with an electric razor.* I cannot use a good disposable razor anymore—last time I tried, I looked like I had been attacked by a feral cat!
*
If you want me to go somewhere with you, don’t say I’ll be there in 45 minutes and be surprised I’m not ready!* Or help me get ready and then announce in public you had to put my bra on me!*
*
If you come see me at my house, be there for me—don’t come in and make comments about the bathroom sink being dirty, laundry laying around or the trashcan being full.*
*
I’m doing the best I can………….
*
The loss of independence is overwhelming some days………..
*
However, I still have opinions, thoughts, feelings and desires.*
I will NEVER go anywhere in public in my pajamas, so don’t expect me to!* You wouldn’t, would you?
*
Same goes for a bra—I may hate them but………..I’ll never go without in public.*
*
Don’t say to me oh don’t worry about it for dirty clothes, mismatched clothes, undone hair, un-brushed teeth, or no makeup when you want me to go with you last minute.*
*
Just think about it……..would you go that way?
*
I really feel for kids 2 and under….no wonder they have temper tantrums!* Their parents are dressing them—goofy hats, goofy pacifiers, goofy outfits!*
*
I have an amazing group of people who love me, help me and take care of me and I wouldn’t still be in my place without them……..so I feel a bit petty in writing this; but my feelings are my feelings and stronger with the frustration of the progression of this disease………..
*
Keep the Faith!*
Love,
Lisa
