Like my boots?
I drew this 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" contributes insight into why this is.
Well, 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 a stereotype for 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 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 patients are deficient in sialic acid which causes some of the muscle weakness. Normal muscles contract, so when you work out and get hot it's because your muscles are contracting heat and generates warmth. But, HIBM patients don't have enough muscle for adequate contraction and I guess that contributes to the coldness. That less mobility. The more I progress, the more coldness I experience.
If you've slept next to me 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 can become 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 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 don't share so you to feel sorry for me, feel bad, tell me how inspirational I am nor get attention, because quite frankly this type of attention is one I'd rather leave on the shelf.
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. 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 when it hasn't eaten for days or weeks. How they must feel knowing they have no home to go to. How quiet their days and nights must be.
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. Despite the utter pain it can 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. Maybe we wouldn't be as arrogant, self-centered and self-important.
HIBM has definitely contributed to me opening up.
*HIBM is now called ‘GNE Myopathy’