From Another Thread - A Personal Note

[DreamDiver]

kind of like the "spoon theory"

https://www.youtube.com/watch?v=jn5IBsm49Rk

I've been to her website before a long time ago, but I'd never seen her speak before. Excellent explanation for many chronic untreatable illnesses.

[Madalot]

kind of like the "spoon theory"

https://www.youtube.com/watch?v=jn5IBsm49Rk

I'd never seen this before. It so explains my life. I teared up watching it.

Thank you for sharing this.

[Julie]

Why do I feel I want to run out and buy you a whole set of silverware? . A great big one, the kind that comes with a lot of little spoons for eating specialties, so you always have some, and they fit into every pocket you have (or some unmentionable places in case you run out of pockets ) and they have microchips so that if they ever get lost and are found, they can be returned to you from wherever they are.

I think from now on I'll keep a couple lying out, instead of in a drawer, to remind me of you and all the friends here who are so understanding about it all, and for the time when maybe I'll need an extra supply too.

[JohnBFisher]

cflame1, thank you for sharing that. I had heard of it, but had forgotten the story. Your timing is great. Recently, since I've gone on long term disability, I've been dealing with "But you seem OK !?".

Ugh !!

How do I explain how I can do just one or two things away from the house before I am overwhelmed? I don't fight the weakness that madalot fights. Instead, I rapidly reach a point where I experience sensory overload. Due to the problems with my cerebellum, I can no longer automatically sort out conversations when I am out in a mall or in a restuarant or at a movie or ... I can do it, but I must concentrate on it. It tires me incredibly.

Visual input is just as bad or worse. Soon, it just becomes unbearable sound and visual images. When it's very bad, I loose control of my eye muscles and need to close my eyes. I find myself "rocking" to try to comfort myself. I start to understand how an autistic child must feel.

And if that wasn't bad enough, my speech slurs. I start fighting to just walk. Doctors often like to use cold, sterile descriptions. "So, you're having gait disturbances?" asks the doctor. Shoot no! I look more like Frankenstein's monster than someone who once acted and danced on stage.

I often fight my very hands ... to read a newspaper, to pickup the vial of insulin. I even bought cushions in which I can put the vials. Without that, I figure I am all too likely to drop a vial. I drop things all the time. These hands that took piano lessons from fourth grade until my junior year in high school.

How do you explain that just listening to a conference call can overwhelm me? How do I explain that just chatting with someone can cause all those symptoms to worsen?

How do you explain to someone that just because I am not in a wheelchair or don't use crutches does not mean that I am not restricted? How do you explain that because I choose to walk does not mean it is not a constant struggle? When you walk do you feel as if you are wading through water? My walking is just me being stubborn. I refuse to give up!!

Do you worry you are going to fall because you NEVER feel "in balance"? Does the world spin when you are standing still?

But I should not whine ... unless I bring out the cheese and crackers to go along with it. 8^) I do have a lot of blessings. I am fortunate to have my disability insurance. I am grateful I can continue to provide for my family. I *can* do a lot.

It's just that question: "But you seem OK !?" ... The Spoon Theory ... I will need to remember that analogy. It's a good way to explain it.

[Madalot]

But I should not whine ... unless I bring out the cheese and crackers to go along with it. 8^) I do have a lot of blessings. I am fortunate to have my disability insurance. I am grateful I can continue to provide for my family. I *can* do a lot.

It's just that question: "But you seem OK !?" ... The Spoon Theory ... I will need to remember that analogy. It's a good way to explain it.

It's not easy, is it John? But I admire your ability to cope, adapt and trying to stay positive despite such life-altering problems.

One of my biggest "struggles" is coping with friends and family that just don't understand, trying to talk me into doing things that just aren't possible. Going grocery shopping alone is out of the question for me now. I was talking with family about it and one person looked at me, with a serious judgemental attitude and said "Why can't you go yourself? The grocery store will have someone load your car for you!" Sure, but are they going to shop with me and get things off top shelves? Are they going to lift that gallon of milk that I can't lift? Are they going to push the cart while I buy $100 worth of groceries? Are they going to come home with me and bring them into the house and put them away? All of these things are impossible for me to do now, but this person was bound and determined to figure out a way for me to do all that by myself.

When I talk about how I don't want to do a sleep study because it's hard for me to be out of my environment, one family member gets on me. I try to explain that it's very hard for me to walk and they look at me and say "But you walk at home!!" as if to say I'm making more of it than necessary. Even my daughter yelled that time and said "But at home, Mama has things set up for her to hold on to if she gets up! It's harder being somewhere else!"

I deal with this kind of crap all the time. Unfortunately, some of these people wouldn't get the spoon theory and will never understand completely! They're a little too dense and if it isn't happening to them, they will never get it.

I have my moments, but I really try to stay as positive as I can and be grateful for what I still *can* do. I'm having a harder time right now because of the breathing issues that don't seem to be under control.