One woman's journey and dawning realization of the slow destruction of her spirit while trapped in the jaws of disability.

Disability is at first an affliction of the body, then a state of mind and finally a shackle upon the spirit.

Lydia M N Crabtree, 2012

Saturday, January 14, 2012

Activity Has Consequences

As many may have noticed I have been very active the past week. I have written and published several blogs. I have returned and created a lot of correspondences. I took a very long car ride that lasted over six hours (thanks Lakshmi!!!). I have cooked dinners, folded clothes and cleaned up the house. I have balance the books and picked up the house nearly daily. I have even taken down Yule decorations and put out Imbolc. I have reached out and reconnected with new and old loved ones. I have managed to meditated a few times and I have even done a taro reading which I haven’t done in years. I have sent emails and dealt with my son’s school regarding some outstanding issues.

This may have caused many of you to say to yourself, “Disable? Yea, right!”
I thought I might take a quick moment to reflect on the current state of my life and share it with you.

I am physically exhausted. I am having bowel issues pretty severely that cause me to try to stay home or take serious precautions in order to go and travel. Sleeping seems to give me no rest. My back and kidneys ache and my hands are swollen. My face, neck and upper chest are flushed all the time like I am in the middle of some heavy duty work out. I have passed out over the course of forty-eight hours no less than ten different times. Out of those ten times, four of those have been significant events. This means I was completely blacked out for at least five seconds or more.
I am having dozens of partial episodes. These are episodes of severe vertigo or dizziness that I am able to prevent from escalating into a full blown episode.

I am avoiding my bedroom only because I know if I get near it I am likely to nap and therefore throw off my sleep schedule which only furthers both kinds of episodes. I am shaking so frequently that it feels like something is shaking the couch I am sitting on. It makes me feel like my core muscles are having violent spasms, which they probably are.
All of this makes me depressed because it causes my disability to be spotlighted and my condition to be unavoidable. Alice, the wonder service dog, gets nervous and  tends to follow me around. Any crashing sound or sudden cry from me brings her running and sometimes she simply comes to me and nudges me because she knows my chemicals are not right.

I try to counter act all this by drinking lots of Gatorade and despite being sure I am very hydrated, the reactions to my condition continue to be evident.  So I try to eat a series of small meals, which is recommended for my condition. Unfortunately, eating and sleeping don’t usually go together. So then I worry about taking medication to help me sleep better.
Having done all this activity, I begin to think about the other things I would like to do. Projects I want to finish (a blanket for Sarah that hasn’t been finished in YEARS, working on my BoS).  I begin to get frustrated that I am not able to do all the things I did when my disability didn’t dictate my life. And as all this swirls in my head, other things I NEED to do to help my husband or son come up and I can already look into next week and worry about those things getting done.

Being so exhausted I sleep until eleven and then am further frustrated when at four o’clock I am looking toward dinner and supposedly winding down and I simultaneously can’t wait for it to be late enough to go to bed and am irritated that I don’t have more time do the things I need and want to do.
As my annoyance raises my family’s exasperation rises in equity. Pretty soon Tony and Sam are bickering over small insignificant things and I am further irritated and begin squabbling with both of them. At this point there is no relief for anyone in the family. We all go to our different corners to lick our wounds and reset our perspective. I am not sure how the boys do this. I do it by calming down and reminding myself I am only irritated at situations that are beyond my control.

Recently I have started chanting, “Eat the elephant one bite at a time and NAME the bite.”  What I mean is that I say that I am going to take care of one issue that has been distinctively named. “Right now I am going to finish fix up the look of my blog.”  “Right now I am going to call and talk with Crystal.” “Right now I am going to write a piece about being at my physical and mental worse.”
I am beginning to encourage my boys to take this same approach.

I also spend some time trying to slow my heart which during times like this is well over a hundred beats per minute. I also take some medication to help slow my heart and relieve some of my stress. I am going to sleep tonight with the thorough understanding that tomorrow is likely to be a repeat of today and I am going to ignore whatever I can, try not intervene between a teenage boy and a grown man bonding like only the male species can.
I write all this not to illicit some kind of sympathy from you. I don’t want or need that. I write it to let you know that what you see sometimes might be a strong, healthy, confident woman who when you leave and I shut the door succumbs to the syncope that has been threatening her since you arrived. That even if it seems I am up beat on Face Book or on this blog I am trying to find a way to open my shackles through a turn of my attitude and does not necessarily reflect the physical pain I am ignoring.

…let there be beauty, strength, power, compassion, honor and humility, mirth and reverence in you.

The Charge of the Goddess, Doreen Valiente adapted by  Lydia MN Crabtree, 2007

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