Preparing more documentation for medical review I sat down, only to find that there are some changes over the last year, but maybe not as many as I like. That doesn't stop me. The world tells us that we are only what we can do, when you can't do much that can feel limiting and discouraging. I challenge you to find what you can do. Focus on where you are going, not where you are at. It is important to be honest about where you are, but focus time effort and energy on where you are going.
Daily Routine:
Wake up
with family, dress, eat, medications.
Walk
for PT. Rest. Review email and mail. Read.
Eat lunch. School work. Rest.
Kids
home. Husband help with after school reading time. Rest.
Work
with family to make and eat dinner.
Family
time. Read. Bedtime.
That is an average day. I continue to breakup low levels of
activity with rest. If fatigue sets in then headaches and loss of neurological
control result. I lose the power of speech, become disoriented, distracted, and
begin to have tremors. I struggle to keep mood high and level, rest hydration
and attention to diet are necessary. I take a daily NSAID to help with the pain
but that really makes it bearable. Opiates are not a good choice for me, so I
work with Dr. Awesomesauce to keep medications as low as possible to avoid effects. I
do keep a small garden to help with depression and physical therapy for fine
and gross motor control. I cannot work in the garden daily, but the hopefulness
of the flowers helps me to stay involved and engaged with my community. I had to stop volunteering in my church after
surgery and it took me a long time to go back regularly. I am still very restricted in my activities
and need the support of my husband to attend. His support allows me to be as
involved as I am, he helps me when I stop being able to think or reason. ex. I
have spent 45 minutes completing this information. I am in a quiet room, by
myself, no distractions and in that short time I have a headache from trying to
be clear and cohesive and I will be going to rest so that I can function for
lunchtime, when he will check on me to make sure that I am eating.
I have three
calendars in my house and my daily schedule on my phone; medications, meals,
and even time when my kids get home from school are all programmed. I struggle
with tracking time and this is the only way I have found that I do not miss my
self-care.
I journal daily and have prepared a recovery journal based
upon daily gratitude on focus on the positive. I adhere to the principles of
Steve Bow who said, “God’s gift to you is
more talent and ability than you will ever use in one lifetime. Your gift to
God is to develop and utilize as much of that talent and ability as you can, in
this lifetime.”
I am doing my best. I am doing more than the doctor believed
that I could. I can speak in most cases, I can walk, I can hug my kids. I work
every day to become someone better for this experience. The stress and strain
of having to go through constant medical evaluation brings home how far I have come
but illustrates how much farther I still want to go. I balance my day trying to
keep everything manageable, the pain, the “dumb” when my reason stops, and even
my brain stem functions. That is my day.
