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IMG_1630.jpgI got the urge to sit down and write and it’s just because. Nothing is going on. I feel good, for the moment. I just want to set some words down, however meaningless. Perhaps it is because of this Mindful app I downloaded. It asked me to choose 3 items from a list of goals or life changes that I wanted to accomplish and one that immediately leapt at me was commitment, which I have not been keeping. It’s not easy, I’m a chronically ill procrastinating dreamer who hasn’t been able to stay committed to a lot of resolutions and positive life changes I’ve tried to instill into my life. Maybe I am tired of the constant struggle. It’s all work. Sometimes I would just like things to happen if I do what I am meant to do, run smoothly, but they don’t.

I’ve also been doing a lot of thinking about my future and what it holds.  I’ve done it often and it held different forms. I alternate between hopeful and catastrophic. I know what it won’t be the OK I used to envision. It has always been in the form of simplicity and humble which is fine by me because I am realistic about the provisions I have made for it and what I want out of life. Satisfaction imbued with a feeling of worthiness. A small home that is mine. I hope that it will be on wheels so I can go wherever I want. That is reaching I know, but it is certainly more likely than brick and mortar. Then, of course there are the medical considerations. I beginning to think my GP regards me as a hypochondriac. They seem to present as mysteries to neurologists, internists and some other “ists”.I’m beginning to think that these professionals may think I enjoy the rarity and mystery as if they make me special. I never wanted to be special like this!

I think about what I can do in this forum. I want to create a niche for myself, but my thoughts are scattered, everywhere and nowhere at once. I continue to ponder but first, the words. They are in the box. That’s a beginning.

Feb 2 Day 1

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IMG_9814It’s that time of year again. Hopefully we’re still keeping the promises we made to ourselves. Do more of this, less of that, do that better. Doing more of this is one of mine. I know better to overload my plate with expectations, so I’m keeping it small; it’s only this. It’s February 2. I’m just a little behind the curve.

Now as far as the exercise of writing goes there’s a few things I want to write about. It’s not beautiful prose or a work of fiction that captivates. This nasty trinity tend to eclipse my everyday life, overshadowing all of it. However, I don’t want to expose myself, hang out there on a limb. I think perhaps it is important, sheds some light or maybe not. I don’t know exactly the words will flow….Be patient. Look, I’m in front of the computer on a day when I’d rather burrow under the covers and stay in bed and forget that the world exists. It doesn’t help that it is swirling around me, making it difficult to see. The inertia is profound. My inspiration like my energy is nil.

Just so you know I wanted to delete this and just go lay down where it feels safe, but I know I would beat myself up for not doing something. Maybe I should have tried a feeble haiku instead…but now I hit publish and just put it out there.

days like this….

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I am going to start writing about this. I don’t know why I haven’t before. This is the journey I have been on for a couple of years. A bunch of medical professionals started muddling about, since I sought help, making the past few months particularly wretched. Perhaps I’ve been too fatigued to lift my arms, or maybe my vision was blurred while inspiration struck but I just didn’t set anything down. I am so frustrated, and writing is the only way I know how to deal with it. Pull the words out of my head and put them out there so I can look at them and make sense of the feelings. If it’s at all possible.

I got off the bus after my last appointment and bumped into a friend. I was heading to a local greasy spoon to push down my anger and sorrow with a basket of fries. The appointment hadn’t gone so well, which is to say that my doctor simply stared at me and provided no input, nothing. I didn’t expect him to get off his stool and come over and hug me but the least he could have done is take my blood pressure, which is part of the problem as far as the professionals are concerned. He logged my symptoms, again, which I find unnecessary because they’ve not changed and are a matter of record. So I tell him again that I’m dizzy, my vision is blurred, my balance is precarious, in varying degrees every day in chunks of the day. I can’t work with this going on. if I am able to leave my apartment for necessities I feel vulnerable. I am accustomed to being strong, long strides taking me to my destination. Now I have to be mindful. If I am not careful my body could suddenly list right or left and I could fall, just like that, even if I am feeling almost normal.

Perched on his stool he told me the echogram I just had indicated a PEF shunt, a hole in my heart. He didn’t tell me if this was worrying or significant, he just put it out there. He left the room and came back with a piece of paper he thrust into my hands. I’m being referred to a cardiologist. Then he left the room again, appointment over. I was left there holding the piece of paper and my coat, gobsmacked.  So when I came upon my friend, the feelings were roiling around inside, but  we exchanged pleasantries, and talked for a minute. However, I couldn’t contain myself and began to cry and then my frustration really got the better of me and I howled and yanked my hat off and stormed off up the street. Then I stopped, remembering my friend but there was so much exasperation left, as I tried to articulate a bit further, I utterly lost it, simply shouting as loud as I could falling to my knees. You have to understand, this is completely out of character. I don’t cause scenes. I simply don’t. This process over the past few months has simply gotten the better of me. I feel like the reason for what appears to be disinterest in my health situation is that they are simply stumped. Whatever it is, it is incredibly disheartening.

My friend picked me off the ground and put me in his car, and then got my fries for me. What is it they say about friends? Well it’s good to have them, that’s for sure. The fries didn’t give me any fresh perspective, but for a few minutes I forgot about everything as I salted (yes I did) and peppered them and gobbled them down.

it’s come to this

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i wake up buzzing, my world off balance. i’m unsure whether i can make it out of bed or not. the hallmarks of a vertigo episode very obvious, but this new bully has been switching it up; making it so i can partially function for awhile, albeit poorly, and then it takes me down. hard. 

it would figure, this being the first day of holidays, a hopeful sliver of sun peeking through a gap in my otherwise dark sleeping space. so i gingerly push it and try my luck. the threat of falling is imminent so i am prudent about navigating my morning. i seek out surfaces to steady me and there’ll be no bending over  to retrieve anything, not until my world complete rights itself. doing that would ensure a swoon. sorry bijou, breakfast will be late.

this is the newest development in my life, a weird health issue that is like but unlike a condition that is documented but virtually untreatable by traditional methods. i’m already barely keeping the beast at bay by dosing with another drug and then there’s this. sexy name, vertigo that, but it is not pleasant. it’s bad enough i don’t want to get up most days and enter reluctantly into the life that is now mine, this bastard ensures i won’t. and not pleasantly by rendering me unconscious or anything like that. i am painfully aware of my situation as i dip in and out of a fitful consciousness while dealing what a few of hallmarks of it which are decidedly undignified.

i walked away from this for awhile and i’ve been able to manage some coffee, and got myself to dancing to an energetic track on songza so i think i’ll be OK. Not 100% but alright. Who’s 100% anyway?

I’ve formulated a loose plan for today. I’m going to put a smile on my face and go. It’s what I do. off i go.

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