November - Epilepsy Awareness Month & "Gratitude" Month

Some of you might not realize November is "Epilepsy Awareness" month.

It is also the month many on social media call "Gratitude Month" which means, essentially, that people list daily what they are 'thankful' for during the month of November.

This year it struck me as ironic....the very month people daily list what they are 'Thankful' for is the very month many epilepsy foundations try to increase awareness about seizures and those living with them.

Like so many living with a chronic disorder my "Daily Gratitude List" might looks a little different to most. For instance, it goes without saying I'm thankful for my family however, I am thankful for my family because:

1. Without them I would have zero life. At all. I would be confined to a bed or have to have a stranger come and watch me daily.
2. Without them most likely, I wouldn't be alive. They have rushed me to the hospital while doing CRP because my medications weren't breaking down properly. A few times they knew to continue to argue with the doctors that the new medication was NOT a good idea, the side effects weren't worth the possible benefit.
3. They are willing to be with me no matter what I look like, if I've had a seizure on the floor and sit in a daze beside them or, if I have had a rough couple of days and simply want to get out (even if I'm in an exhausted state and look like I've been run over).
4. I'm grateful that they have been around me so long that when words fail to connect from my misfiring brain in order to make it out of my mouth they step in and ease my frustration, beginning the 'guessing game' with the details and hand gestures I provide.  

Physically my list might look like this:

1. I am grateful I have gone 3 days without a seizure.
2. So, SO, so thankful while in public my bladder was empty when I had the seizure.
3. I'm especially thankful that I can still walk, woggle (cross between a jog and walk), read, talk, and type-- many with epilepsy lose that ability due to the nature of the seizures.
4. Although I complain about my 'ample' thighs and butt, it has saved me from broken bones many a time (also, for an extra hard head....I've had very few concussions over the years--mainly due to my families diligence but I will give credit to my noggin too).

Most of all...I am thankful I got 'over myself' and refused to allow my disorder to control my life...I refuse to hide in my house in the (likely) chance I will have a seizure. I'm sorry if it makes you uncomfortable...but, that is for another post so, I won't go down that road...

I'm thankful, not for the disorder,  but learning to live despite it.  

Beginning Again: Working out & Writing.

I'm not sure I should title this, "Beginning Again" since I never really started... Ah well, good thing about for and about myself is-I can put what I want, within reason.

Really, the deciding reason of   "Beginning Again" is I want to feel as if I at least started (I named the Blog long ago)...it's always been easier for me to 'pick it up again'  vs. starting new.

Through soul searching and quietly talking to myself I realized this blog was similar to my attitude/thoughts/action (or lack thereof) of working out and writing again. Full of excuses and reason's why I haven't BEGUN AGAIN.

Guess some background info is needed. I'm gonna try to use less words (I've struggled with 'word limits' all day! UGH! I'm wordy and I know it! I also like exc!amation points, if you didn't notice).

Seizures took away/altered/decreased (no particular importance):
1. DRIVING- dangerous and illegal for any person with uncontrolled seizures.
2. WORKING OUT- I can't get hot, have to have a family member take me or be w/me
3. WORKING PERIOD-we own a small business so, I work when I can (Teacher by ed.)
4. BEING ALONE-I'm never alone. Ever. My family is always there...always checking on me
5. HEAT-can't be in heat over about 85 (driving was easier to accept-I love sun, gardens, Summer) 6. LIGHTS
7. STRONG SMELLS-mainly perfume and cologne
8. CROWDS-mental, I get uneasy in crowds..worry I will have a seizure. Usually I do
9. SOUNDS-(repetition and certain pitches)  Yay, no Wal Mart/shopping for me!
10. READING/WRITING-some days I can't understand words-at all. It's as if they are fashioned                                         from an unknown script or language. I also struggle with simple                                                     grammar and sentence structure. As an avid, crazy addicted reader those                                       "non reading" days are beyond hard. As a woman passionately in love                                            with writing I have allowed my fear of judgement from others in my                                              noun/verb errors, fragments, usage of dots and dashes to cover up                                                errors and total grammar screw-ups to keep me from writing.

THIS, entry is about numbers 2 and 10.

I haven't done either of these activities because of fear along with equal parts laziness and a dash of guilt.  My guilt is simple-my family has to watch me 24/7. Literally. I have a "Mom sitter" or, "Seizure sitter" every single day. I don't shower unless my husband is with me or one of my kids is sitting outside the shower, I don't make coffee, dinner, or even get a snack w/out someone knowing I'm walking from one room to another. There is no "private bathroom" time for me. Yes, it was  a huge adjustment and I had some trouble adjusting. However, the choices are simple: have someone watch me and 'live' or, stay in bed, or risk dying from a seizure (fall can do it or, actual seizure that isn't stopped).  SO, to ask one of my children or husband to 'work out' with me I feel is selfish--its even more time that they have to invest in me. My children are extremely athletic...my boys play (oldest played) football & wrestle (oldest is now wrestling in college) and my daughter is a golfer (she walks 18 holes up & down hills while carrying 25 lb. golf bag).  None of them want to get up early to walk me.  My husband works...all the time. We own a small business, partly because we've always owned a business but also because I can't work. He worries about me...he wants me to have a life.

***SIDE NOTE: Not to say that he has to work as much as he does-he loves what he's doing and would rather be at the shop building and creating then sitting at home watching TV or playing Halo. ...the adjustment for me as a "working woman"  into forced retirement from a teaching job I loved is for another blog entry-suffice it to say that I've struggled with my new 'role' in this business. ***

Prior to my seizures I was doing Zumba 2x daily, Yoga 3-4x a week, had begun doing Pilates and worked in my yard in the middle of OK summer a couple times a week. At 32 I was in the best shape of my life...then, I spent a year in bed and slowly began to get soft and wither. My medication to control the seizures put 10 lbs on me. Over the last two years weight has slowly crept on and the last year all muscle tone and endurance has evaporated. I could blame the fact that in April I turned 40--which might contribute but I know that it is sitting on my softening behind not moving my body that has done it.

To look at me you'd never know I struggle with my 'weight'. According to the health guidelines I'm not overweight and I'm "average size."  Do I like my reflection? NO WAY! More, I don't like how I feel. I don't like that I pulled weeds for an hour this weekend from my forgotten beds and could hardly move the next day. I don't like that I can't walk around the block. I don't like that I have bat wings for upper arms. I really don't like that my shoulders are so weakened from seizures that I now might have a torn rotator cuff and know I have a dislocated shoulder-which means most days I can't even hold my phone in my left hand much less hold my body in a yoga pose if I wanted to.

Likewise, the fear of "Grammar Judges/ Uglies" I haven't written. My frustration at having to stop and think about which your/you're, than/then, their/there/they're to use, double checking for commas vs. semi-colons (which I've always struggled with), periods, fragments, noun/verb agreement, tense switching, and using "I" to (or too? ) much has kept me from even writing in my journal. Journal writing began for me in Jr. High...it was the way I kept myself "glued together".  The frustration of my fragmented, skipping, sometimes senseless thoughts which made the transition to paper caused me so much angst that I simply stopped. Completely.

Until now.

Today is the first day.... I have personally experienced the "magic of writing down goals"...it's something I passed down to my children.  I KNOW it works. So, here are my goals with my current "Seizure Stealers"    (I know that isn't a real word)....

1. WRITING: I will write and post something on this Blog or my other Blog, "Dara's Dilliance" @                        least once a month, gradually increasing the frequency as the year progresses.

2. WORKING OUT: I will begin working out-walking, pulling weeds, dancing (something) 5 days a                                 week...increasing the intensity and time in 30, 60 and 90 days. I realize I
                                must start small...and looking back at where I was only defeats my future.
                                I'm no longer a 32 yr old woman working to look great in a bikini...I'm a 40                                   yr woman defeating seizures every single day and getting healthy for life.                                       (Not  that I won't be 'happy dancing' to losing some inches and cellulite).