I don't know when it started. It was probably something simple like I was having a bad pain day and something really needed to be picked up off the floor. So, since my son was down there anyway, I asked him to hand it to me instead of bending over. Or, because I am short as well as LC (living conditionally), I had him get up on a stool or counter to reach something up high rather than trying to do so myself.
It didn't even occur to me that my son understood my limitations until the first time my significant other went on a trip. I was doing my best, but I was seriously struggling. I had managed to get out of bed and warm up a cup of coffee, but that was about it. Later when my son, who was always very independent and wanting to do things for himself, was getting himself a sandwich. He was about 10 years old at the time. He stopped, came into the living room and asked me if I wanted him to make me a sandwich too, since my significant other was gone. He asked gently, softly, which I took to mean he understood my need for quiet when I was having a bad day.
I was speechless, which doesn't happen often. I finally said yes, if he didn't mind at all, I would love a sandwich. He smiled, and went back to the kitchen. A few moments later he brought me a peanut butter and jam sandwich on a paper towel. We ate together on the couch. I hugged and thanked him for helping me.
When he went back to playing, I cried a little. I was proud of my son, but I was ashamed of myself. After all, I was the parent. I was supposed to be the one taking care of him. I thought about the whole thing long and hard. Here are a few things I realized...
-I have a great kid. He is kind, understanding, and generous.
-Being helpful made him feel good about himself.
-On a bad day, making a sandwich might have taken a spoon or 2 when my supply was already short.
-Accepting his help gave me the energy to be able to cook dinner later.
-Being ashamed of my illness wasn't doing me any good. It is my life, my reality.
These days I ask for help easily and more often. He does little things to help me and we count them as part of his chores.
Thursday, June 16, 2016
Wednesday, June 15, 2016
Spoons
People with chronic illnesses are constantly trying to explain to others what it's like to live conditionally. The explanation I use most often is The Spoon Theory by Christine Miserandino.
It can be applied to any chronic illness or disability.
Have you used the Spoon Theory to explain your chronic illness or disability? Share your story in the comments below.
Sunday, June 12, 2016
Limited
Have always been an overachiever, can't really help it - do everything full kilter. Among other things I'm a person of extremes, and have a one track mind, so if I ran into problems I pushed past them through sheer force of will if I had to. If it took a couple hundred tries I was up for putting in the work. (Even though I was often called a quitter, but that's a different story.) Of course you can't do that with everything, and when I couldn't I assumed it was some failing in me. I hadn't tried hard enough, could have just payed more attention, or practiced more, or push through the discomfort, or grown three inches. I must be lazy, or just a big baby, or I would have finished/learned whatever, would've found a way to make it work.
A limit, any limit, was a failing in myself. It had nothing to do with how possible the thing I was trying to do was. After all, you can do the impossible if you just try hard enough, right? In some cases that's true, and my tenacity and stubbornness has served me well in many parts of life, in other cases it's slowed down my ability to accept not only "normal" human limits but the additional ones that come with chronic conditions.
I have to stay pretty active to keep moving at all. It's like I rust or something. Joint and muscle problems crop up, and I lose range of motion and ability to stand steadily pretty quickly. It takes time to get back to a place where I'm relatively comfortable and my body is working mostly. Exercising is sometimes painful and always uncomfortable (probably the same for lots of people), but I've learned it's easier to keep up with if I find something that I enjoy doing and pay attention to my specific body mechanics.
Picking something I really like gives me incentive to keep up with it, for obvious reasons. Listening to my body keeps me from hurting myself, generally. It's been hard to come to terms with the fact that deterioration and damage to my body means I can't do a lot of things I should be able to at my age. Had to learn to recognize the difference between "I'm bad at it and can learn with practice" and "I'm bad at it because of an injury/medical issue and I need to stop doing it". For example, somersaults aren't particularly dangerous, and while not easy for a 36 year old they are completely doable. For me the pressure on my crooked and cracked vertebrae could do serious permanent damage, so I have to stand by and watch everyone else do things that I can't do.
I'm also prone to repetitive stress injuries, which means that doing something regularly can mean a new injury. I used to write a lot, can't by hand because of carpal tunnel issues. Typing is easier, but even that is hard on the wrists. Have some pretty serious foot issues and knee problems etc, so although I love to walk I can only do so for a bit. With good shoes and regular exercise, I can hike still. Uneven ground can be dangerous for the ankles, knees, and hips. Standing still wreaks havoc on my back and hips. It's like a no win situation all the way around.
As I get older there are more and more things I can't do, and I know that is going to continue to happen. I know it happens to everyone over time, it's just happening to me at an accelerated rate compared with my peers. Each time I have to walk away from something that I've put time and effort into, something that I love, it's a painful blow. Some are worse than others. I've been doing an activity that can be hard on the shoulders and damaged my rotater cuff. Not only did this make the thing exceptionally difficult, the doctor told me that if I kept at it I would probably lose the use of my shoulder.
It's one more thing in a list of things that have been taken from me, and it broke me a little bit. I'm running out of activities that I can do, and find it hard to stay hopeful and to keep doing as much exercise as I can. I'm limited, and watching the number of things I can do dwindle. I've been angry and hurt and frustrated and the people around me just don't quite understand. It's hard to explain the despair in realizing that the more you like something or do something the quicker you're going to have to give it up. Makes it hard to not throw in the towel.
A limit, any limit, was a failing in myself. It had nothing to do with how possible the thing I was trying to do was. After all, you can do the impossible if you just try hard enough, right? In some cases that's true, and my tenacity and stubbornness has served me well in many parts of life, in other cases it's slowed down my ability to accept not only "normal" human limits but the additional ones that come with chronic conditions.
I have to stay pretty active to keep moving at all. It's like I rust or something. Joint and muscle problems crop up, and I lose range of motion and ability to stand steadily pretty quickly. It takes time to get back to a place where I'm relatively comfortable and my body is working mostly. Exercising is sometimes painful and always uncomfortable (probably the same for lots of people), but I've learned it's easier to keep up with if I find something that I enjoy doing and pay attention to my specific body mechanics.
Picking something I really like gives me incentive to keep up with it, for obvious reasons. Listening to my body keeps me from hurting myself, generally. It's been hard to come to terms with the fact that deterioration and damage to my body means I can't do a lot of things I should be able to at my age. Had to learn to recognize the difference between "I'm bad at it and can learn with practice" and "I'm bad at it because of an injury/medical issue and I need to stop doing it". For example, somersaults aren't particularly dangerous, and while not easy for a 36 year old they are completely doable. For me the pressure on my crooked and cracked vertebrae could do serious permanent damage, so I have to stand by and watch everyone else do things that I can't do.
I'm also prone to repetitive stress injuries, which means that doing something regularly can mean a new injury. I used to write a lot, can't by hand because of carpal tunnel issues. Typing is easier, but even that is hard on the wrists. Have some pretty serious foot issues and knee problems etc, so although I love to walk I can only do so for a bit. With good shoes and regular exercise, I can hike still. Uneven ground can be dangerous for the ankles, knees, and hips. Standing still wreaks havoc on my back and hips. It's like a no win situation all the way around.
As I get older there are more and more things I can't do, and I know that is going to continue to happen. I know it happens to everyone over time, it's just happening to me at an accelerated rate compared with my peers. Each time I have to walk away from something that I've put time and effort into, something that I love, it's a painful blow. Some are worse than others. I've been doing an activity that can be hard on the shoulders and damaged my rotater cuff. Not only did this make the thing exceptionally difficult, the doctor told me that if I kept at it I would probably lose the use of my shoulder.
It's one more thing in a list of things that have been taken from me, and it broke me a little bit. I'm running out of activities that I can do, and find it hard to stay hopeful and to keep doing as much exercise as I can. I'm limited, and watching the number of things I can do dwindle. I've been angry and hurt and frustrated and the people around me just don't quite understand. It's hard to explain the despair in realizing that the more you like something or do something the quicker you're going to have to give it up. Makes it hard to not throw in the towel.
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