The purpose of this blog is to create a written timeline of how I'm feeling, how this disease is progressing, how I am dealing with it, how my family is dealing with it, my ever changing symptoms, etc...you get the point. However, I have done a terrible job with it. With this disease being such an unknown, rare disorder, how is anyone to learn about it, if no one talks about it?! My goal...to use this blog as intended. Here goes.
Today is Tuesday June 17, 2014. I actually had to look at my calendar to know that, I honestly thought that it was Wednesday. That happens a lot. It's not just being busy and losing a day here and there, I do that ALL of the time. My issue with dates makes keeping appointments difficult and makes keeping up with everyone else's schedule downright impossible.
Sleeping is a whole other issue. I fear lying down. I fear it like I fear drowning or like I fear jumping out of an airplane without a parachute. It's painful in a deeply intense way that can only be described as cruel. My neck, shoulders, arms, and hands feel pinched off, like they are being disconnected and sent into a sharp, prickly sleep. It isn't something that gets better as you lay there (if you can tolerate it), the pain strengthens and consumes you, there is no rest. Another difficult element of sleep is my feet. They both swell and the bottoms of my feel begin to feel hot and burn, they sting when I try to walk on them after laying down for a few minutes. There is something about having my feet upright, out in front of me, that upsets them. My ankles swell, causing additional discomfort...as if they are cheering on the pain in my feet. So, I create a mountain of pillows on my side of the bed and sit up until morning. Every night. Sometimes I will sleep until noon (those are really hard days but rest was needed) and other days, I am up at six or seven o' clock, those days tend to be a little better because I wasn't laying still as long. Confusing? Tell me about it!
Today, I slept until noon. It is now 8:30pm and I am just now gaining the confidence to make my hands do something. I couldn't shower today because the water hurts my skin. My symptoms are growing and gaining in numbers. I find it very difficult to inform my doctors of everything that is going on because, without writing it down, I can't remember. My memory is in such shambles that it amazes me sometimes the things that I forget. My memory used to be strong and dependable but it does fail me constantly. My hands burn today, severely. Touch is difficult, function is worse. My neck seems immune to the pain pills, nerve pills. I am unable to look up or sideways. Everyday, my body is communicating that it is time to prepare for surgery. Sooner rather than later. Although it has been less than a year since my last surgery (November 2013-Cervical Spine fusion), it's time again to go under but this time, for decompression and shunt placement. I will have two shunts from C1 to C5.
If you have syringomyelia, and you are one of the unlucky ones who has to deal with constantly growing and new forming syrinx's, you may be able to understand that I can feel when there is a problem in any area of my spine. There's pressure, pain, loss of feeling in new area's of your body. Maybe your bladder or bowel will begin to malfunction, maybe your internal organs will be affected, your skin will be sensitive, your head will hurt, vision will become blurry, this is an endless list. Because, what I have learned, is that this illness does not come with boundaries. This is an autoimmune disorder that always leaves the door open, wide open, so that other AI disorders can invade, increasing the symptoms and the need for understanding.
My emotions set in a long time ago and I am very touchy about how others treat me, or don't treat me. I expect understanding and support, like anyone else. I need more help than ever but try not to show all of my weaknesses, I'm not ready to cave in and let this thing interrupt who I am...inside. But I express my fears and I cry...for myself and my family.
Thank you for reading this blog. I appreciate your time and effort in understanding, hopefully you learned something about what I am going through and about this illness that is running over me like a freight train that's late to the depot! If you are someone who has been diagnosed with syringomyelia,
are someone who cares for another with this illness, or are just curious...please leave comments, questions, share your story...whatever you feel.
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