For my friends that are living with chronic illness, I would imagine you have read this before, but here's the link if you need it again. The Spoon Theory by Christine Miserandino.
I had my first Occupational Outpatient Therapy today. Because I primarily use my right eye, I consistently turn my head to the right and tilt it down, trying to center my field of vision as much as possible. The cerebellum injury from one of the strokes also impacts my balance and makes me carry my head to the right. This, in addition to still carrying my right shoulder high and my left shoulder (that's slowly becoming stronger and less painful, but still needs some healing) low, and I'm noticeably off balance.
We worked on "finding center" and balance exercises, typically to be done with my eyes closed. I kept feeling that what she was calling center was far to my right, though I did somewhat better without my eyes. We also did some detail work with my hands. I have a 70-pound grip with my right hand, but only about a 15- to 20-pound grip with my left. By the time we left I was very dizzy and constantly feel I was falling to the right, but I'm told I was standing straighter.
This afternoon I asked my Dad to raise my walker by about 3 inches. It didn't look or feel too short before, but I noticed that the more I tried to walk without it, the more sore my upper back became, so I concluded those muscles must not be used to being fully upright. M new therapist, P., wants me to walk (still using the walker) as if I don't need a walker at all, using it only for balance when needed, thus raising it helps accomplish that goal because it forces me to have better posture.
I typed most of this update using both hands! It was painfully slow going, I had to watch the keys carefully, I had to backspace and delete a lot, and I wouldn't have made it without my much-needed spell checker, but it is progress!
When I am writing I forget my physical limitations for a while. It's just my brain and spirit, communing with God. I feel smart again, like I have something to contribute to the world. Yesterday I spent all day writing and wrote most of 4 section (out of 46) of my book. At dinner time I was "surprised" when my own little world shattered and to find myself still living the reality of these limitations.
I'm trying to write as much as I can while the kids aren't home. Please continue to keep this book in your prayers. I am close to a third of the way through it, then I am thinking of writing a book specifically on stroke before I move on to Paul. What do you think? I would love your feedback.
A couple of resource notes for myself and my current book project:
For verse look up: BibleGateway
For historical or linguist questions: Greek Concodance and Strong's Concordance with Lexicon
Wednesday, April 11, 2012
My Own Little World
Labels:
chronic fatigue syndrome,
chronic illness,
disability,
ME/CFS,
MLV,
neuroimmune,
stroke,
walking,
writing,
XAND,
XMRV
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2 comments:
Jenni,
You are amazing and not one bit disabled in God's eyes. You are perfect and meant to be who and where you are. I think we we are all "surprised" when we find ourselves living the reality of our limitations. Small to some and huge to others. You help to make that possible. You are a force to be reckoned with J! We need you Girl! Please keep going. You are meant to be writing because you forget your physical limitations for a while. It's the grace and glory of God!!
Miss Becky :)
Jenni,
Thank you for writing so much. This will sound selfish, but I have so enjoyed reading your rehabilitation journey because I myself am in my final clinicals for my OT degree right now. I am seeing patients similar to you and being able to read your thoughts and emotions have been so helpful to me.
You are in my prayers and thoughts often. What a blessing to know that you are informing us therapists who you are not directly interacting with as well.
Much love, dear sister.
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