My body doesn't work quite like most people's. The congenital nerve damage on my right side means my muscles start off weaker and get tired more quickly than most. Sometimes, when I walk too much, my leg starts dragging because I have literally lost the energy to completely pick it up. And sometimes my hands shake for no reason at all. So if I get scared to do something, it's more than likely because I know my muscles often stop cooperating at the most inopportune moments. There will also be days where my body hurts too badly for me to go out. I may not even know the cause of the pain, but on those days, me getting out of bed will be an accomplishment. Please understand.
I have to take a lot of breaks. It's annoying on a trip or excursion, trust me, I know, but the steel and vertebral fusions in my back for my scoliosis put pressure on my hips that makes it excruciating to stand up for too long. And after having my feet reconstructed, I feel pressure when I walk that makes them throb if I don't sit down every so often. If you see me doing awkward stretches in public places, just know that I have to do them to keep the pain under control and keep myself moving. Please be patient.
There are precautions that have to be taken. I have to have a lot of water with me, especially in the summer. When I get overheated, I can have a seizure; if I don't get cool enough in time, and I have a seizure anyway, the water is crucial in getting my body cool afterwards. If it's the winter, I need my inhaler, because my lungs don't handle the cold well thanks to my asthma and pleurisy. I have to remember to take all my meds in the morning before we leave; I'm really good about it 99.9% of the time, but it's in that .1% that things tend to go wrong. Please help me remember.
Sometimes I'll push myself too hard. I'm so used to living with pain, whether it be physical body pain or a migraine (because, oh yeah, I have those, too), that there are times when I ignore my body trying to tell me to slow down or stop. If it looks like I need a break, ask me. If I tell you I don't and you really think it looks like I do, ask me again. I can be stubborn, but I'll appreciate having you watch out for me. I want to be "normal" so badly sometimes that I make stupid choices. Please take care of me, even when I say or think I don't need you to.
I want to have a normal body, but the truth is that I never will. I hope you can accept the inconveniences that come with my disabilities. But don't think for a second that I'm ever going to stop chasing all the dreams I have and getting every ounce of joy I can squeeze out of this life, because I won't. I know what I want, and I'll never stop going after it, even if it takes me a bit longer than everyone else. Please, whatever you do, don't pity me, and don't treat me like an invalid.
I can't tell you what state my body will be in on a certain day, but I can promise you that I will do everything I am capable of to help give us an exciting, joyful, passionate life together. These things are a part of my life, but they are not all that I am. Please understand that. Please trust in that.
Love,
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