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Like my boots?
Here is one to explain why I am constantly cold. Yea, yea, I'm a female and females tend to always complain how cold they are. Something like, "women conserve more heat around their core organs, which means less heat circulates throughout the rest of their body." Well, I guess there is that, plus the HIBM side effect of feeling cold despite it being 80 degrees out.
Two things I love; soup and being warm. Blankets, scalding hot baths and showers galore, bring it on, because I love it and need it. My husband thinks I'm nuts. He's roasting and I'm freezing cold any time air hits me. Turns out I'm not just crazy, but there is an explanation.
Now, I'm no doctor so here is my juvenile explanation. I'm sure there is more to it, but here's the idea. HIBM patients don't have the shiver factor. Like everything, there is a purpose to every little motion in our body. Shivering is a bodily function in response to dropped temperatures in warm blooded animals. When the core body temperature drops, the shivering reflex triggers in order to maintain homeostasis. Your muscles that envelope your organs begin to shake in an attempt to create warmth through it's energy. Well, I don't really have that...some of it, but not all of it. HIBM'ers are deficient in sialic acid which causes some of the muscle weakness. Normal muscles contract, so when you work out get hot it's because your muscles are contracting heat and generate warmth. But, HIBM patients don't have enough muscle for adequate contraction, and I guess that contributes to the coldness...that combined with less mobility. The more you progress, the more coldness one experiences. While I experience being cold all the time, I imagine it's not as bad as it is for patients that are near quadriplegic state.
If you have ever had to sleep me (errrrr, that sounded bad) you would know how absolutely, unbearable my feet and legs can be. It would probably feel like you are sleeping with a dead person, I'm that cold. My feet feel like frozen blocks of ice, my calfs and legs are hard as rock and at times frozen to the bone. I know, sexy. I totally would use this as my dating profile. "Cold as Ice".
If I've been sitting for too long, and cold on top of it, my legs get so swollen and hard that I can't slide off my leg braces. At this stage in the condition I'm not as used to sitting for long periods, but when I do it can be really painful due to the swelling.
My hands are also usually pretty cold, too, especially my fingers. SO, while Jason is roasting and sweating, I am frigid and cold.
I share these things because these are little moments that contribute to understanding a condition. It's person first, and then the condition. I share not for you to feel sorry for me, feel bad, tell me how inspirational I am, get attention, because quite frankly this type of attention is one I'd rather leave on the shelf. I'm not the only one out there with a physical issue and really, mine isn't close to being the worst.
But, it's the moments, not just for MY condition, but any physical or mental condition, that exemplifies a disease, and not the textbook version. The textbook outlines, but the moments living with it are ones that you should really pay attention to. When I see others, I don't really see their condition or predicament, but tend to visualize their small moments first. Homeless. What does it really feel like to be shivering, cold and absolutely hungry? I visualize how the body may move if it hasn't eaten for days...weeks...how they must feel knowing they have no home to ever go to, how quiet their days and nights must be. Cancer. How does it feel to be told you suddenly have cancer and in the coming weeks you will no longer be living?...the fight involved, the tears, the weakness, the humility of every minor, though grand, movement. Autism. To know you're different enough and thrown rocks at, because you don't quite socialize the way all the others do. Parkinson. The frustration in opening a toothpaste cap. When you endlessly shake, yet dying for people to see you first instead of your tremors.
Going from strong to weak is the most humility I have ever experienced. Your mortality shouts in your face. In the same breath you're moving from weak to strong, because if you can stick with yourself, believe in yourself, and keep moving, there's a safety, a comfort, in knowing who you are and despite the utter pain it can sometimes cause, at least you had the experience. The experience of knowing your mortality. It's something we hate to accept or confront, because we are invincible, right? But, there is a beginning and there is an end. I think, there is a comfort in understanding your mortality...you tend not to be as arrogant, self-centered and self-important...well, maybe for some.
It has definitely contributed to opening me up.
The whole picture is great, but the details bring you home.
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