I often complain about how picky I think Lynn is. One of my greatest frustrations is how much effort it takes to get something right for him. It has to be “just so” before we can stop fiddling with whatever it is. I’ve always thought that it was just because he was picky but something he said last night made me realize that he really was just trying to get comfortable. He was telling me that his son said to him once, “Dad, you just have to accept that you’re going to be uncomfortable occasionally. Just accept it.” (I’ve often had that same thought) Lynn’s response back was, “But you don’t understand. I’m uncomfortable ALL the time. When I keep asking you to do it over, I’m just trying to get the extreme uncomfortable down to a mild uncomfortable.”
When I heard him explain it that way, it helped me to understand his world a little more. He actually does not complain a lot. True, whenever I enter the room I have to do 4-10 adjustments to some part of his body comfortable, but after he gets it where he wants it to be, he’s pretty quiet till the next time he needs something. He’s not a big complainer and I think he would certainly have a right to be.
Since MS is a condition that affects the nerves, I’m assuming that not only does it affect how something functions but it also affects how sensitive the nerve is. Thus, I expect his nerve pathways are really hyper and that’s why he can’t seem to get comfortable. His skin itches a lot (I use a lot of lotion on him which helps some) and he can’t scratch it. That could be a good torture technique, to make someone itch and not let them scratch. It could just about drive you insane, I bet.
Not only is an itchy spot mental torture, but a side effect of an unscratched itch is that it can trigger his legs to jump. If you’ve ever experienced restless leg syndrome, it’s a lot like that. The tension builds and builds until it suddenly releases in a spasm causing his leg to jump. So many small touches or scrapes seem to be able to start that spastic response in the him-a corner of a towel rubbing gently across his leg, something liquid falling on his shin, anything hanging over his chair that occasionally rubs his legs. Something that simply triggers the nerve build up and then he gets the spasm.
He also seems to have the “princess and the pea” syndrome. He feels a lump or something in his seat cushion or under his leg and I have to find the irritating culprit. It seems the smallest crease can really cause a lot of pain after hours of sitting in the same position.
I realize that not having use of his hands puts him at the mercy of whoever is around. I often complain because he expects me to innately know where the discomfort is and to fix it.
Trying to get him to describe where the offensive site is can be a real challenge. I keep asking for more detail while I make an educated guess regarding the exact location. If I really think about it, he’s actually pretty good at describing where it’s located. It’s not an easy thing to do. I was seeing a surgeon about possibly having surgery on my hands and he was asking me where it hurt and how and I had the hardest time narrowing down the exact location. Pain sort of radiates to multiple areas so finding the epicenter can be a challenge.
At any rate, I need to pray more for patience with him and the difficulties he has with getting comfortable. He really manages it all remarkably well and I just need to put myself in his wheelchair before I make a comment.
My husband Dan who has MS we were talking on Tuesday about the same thing we were in the car driving and I was having a hard time getting comfortable because of my arthitus and fibemyagia and I told him sometimes the smallest wrinkle is so uncomfortable and Dan also has Diabities arthitius and fibermyalgia along with the MS if it wasn’t for God I would be more stressed than I am.