The life of a Wife of an Epileptic….how hard can it really be?

I remember when I started to date my husband and he said he had Epilepsy….it was a whole new world to me.  I watched and learned to know what he needed and what caused problems, so I would be a help.  His seizures were much different then and they didn’t even seem to be a challenge…little did I know.

My Wedding day……I remember standing at the img_0760top of the aisle ready to walk down to be married….my father whispered to me….”you don’t have to do this”.  He was reminding me that he had a long talk with me and that my life would be different, it would be hard, and we would not always know what was coming.  He wanted me to really think about this decision and not jump into a marriage that was not a fairy tale. Thisimg_0663 committment would be to myself, my future husband and children.  It would be a life that I would choose and not forced into…..and it would be a life time committment and a vow.

Well I can tell you almost 30 years later….we are still together.  I love him more now than I did 30 years ago.  Do I love his seizures?  Well….what I can say is that this is part of the package that makes up my husband and who he is and since I love Graeme…I need to accept this situation with as much grace as I can.

Is life easy as his wife?  No life is not… life is hard, frustrating, challenging and sometimes so overwhelming that I feel like I cannot breathe.  I can say that for me… I can understand what it is like to feel alone and yet be married, I can understand what is like to be a single parent and yet have a husband/dad always around, I can say that I understand the challenges of role reversal.  Let me explain a little about this…..

Epilepsy comes in all shapes and sizes!  Each day is never the same….we make our plans and then life takes over.  If my husband is having seizures….mood swings can come, anger issues, depression, lack of memory, needing tons of sleep and a total change of schedules and life style instantly.  These symptoms can also come on the “good” days when he is not having seizures which makes the good days not so good.  For us we have about 2 days a week of a really “good” day…and the rest are filled with these symptoms of some sort.

img_0757This leaves situations for me to handle on the fly all the time.  We can plan a family vacation, holiday or event and all of a sudden I am going it alone.  I might have Graeme with me but mentally and physically he is really not there with me.  This has left me many times….taking care of the kids and whatever else is needed pretty much on my own.  Many nights I get home from work to find him quiet, depressed, or seizing…..so then my nights arimg_0758e basically spent alone.

I find myself alone in my thoughts too…I don’t always know how to help him, I am afraid and fearful of what life can bring, I am tired and weary at times from just “keeping it all together” for my kids and making it as much of a “normal life” as I can for them….and I am still learning that “normal” is a moving target.

Now with that being said…..I don’t want to paint a horrible picture of our life.  YES, life is tough and YES it is VERY hard at times but we have a beautiful life!  My husband has been a rock in our family even when we feel like we are crumbling.  He has set the stage for us on his good days to walk close to the Lord for strength, for wisdom and guidance.  My problem is that I veer away from this path that I should be on daily and fear and anxiety sets in for me.  Graeme has allowed me to evolve into the woman who I need to be for our family.  I need to work full-time to keep a roof over our heads.  Graeme stays home and manages the home better than I ever could, he assists me in homeschooling our children, make the phone call’s needs, and keeps the running “to-do list” as current as he can for me.

I am blessed to have someone who fights daily with this thing called Epilepsy. I am blessed to have someone who does so much for us as a family.  I cannot even imagine as a man how he must feel.  He cannot work outside the home, he cannot drive, he cannot play sports, he cannot hang out with the guys, he cannot do the “normal” things
that he would like when he would like to and sometimes he will never do many of the things he dreamed about.  Yet he strives to beat the odds, lift his head and move forward daily!  Yes he suffers from down days….but his strength comes from the Lord and keeps him striving for a purpose filled life.img_0759

What can I recommend to other spouses who stand by and watch and stand by and support their spouse with Epilepsy? First before anything ….take care of !!!  I find that we put everyone before ourselves and then there is nothing left.  Take time for a good cup of coffee, take time for devotion, take time to sleep, eat and take time for a segment of time just for you…to shop, have fun, go to a movie etc….  Make a point of finding a support system for your family, your spouse and a separate one for yourself.  Support can come in the form of a structured support group, a Facebook group, family, friends, and your church group and in other ways that you might find. Also, remember you are living this unique life and not your friends and family who “think they understand”.  Sometimes there is a need for you to say stop, no, wait, not now….leave us alone, no thank you.  You are the one who needs to take a stand and protect what is yours…..we live with this and we know better than anyone else what is needed….be gracious if you can but be firm too.

Please let me know what your story is in the comments below….please let us know where you find your support. I would love to hear from you all!!!!!

Lynn A.C. Wilson – Resume of a Mother

 

Epilepsy Awareness and the Do’s and Don’ts…

November is “Epilepsy Awareness” month….but I often wonder is anyone really aware or how much do people really know?  We are a family who has been affected by Epilepsy.  We know what it is like to live with this daily; we know what it is like to live a different life copy-of-file_0005than most.  We know what it is like to consistently tweak our schedule, routine, meds, family events and almost everything else.  We know what it is like to just think that “we got it”, to find out we don’t…and what we thought caused the seizures changed again.

I wanted to write something about some of our challenges when trying to live a “normal” life and also in spite of this thing called Epilepsy.

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How has Epilepsy affected our family….let me list a few things that either you will relate to or hopefully will give you some insight to what “normal” is for us…

  1. Seizures daily
  2. Mood swings daily
  3. Anger issues
  4. Depression
  5. Loss of full time work
  6. Loss of friends
  7. Way to much advice from everyone as to what we are doing wrong
  8. Loss of a drivers license
  9. Large medical bills
  10. Health insurance issues
  11. Always trying new meds
  12. Trying to balance being a parent with your kids when Epilepsy gets in the way
  13. Trying to balance being a spouse with your wife when Epilepsy gets in the way

copy-of-file_00071 in 26 Americans will develop epilepsy in their lifetime. An estimated 3 million Americans and 65 million people worldwide currently live with epilepsy. Each year at least 200,000 people are diagnosed with epilepsy. In two-thirds of patients diagnosed with epilepsy, the cause is unknown.

http://www.cureepilepsy.org/ or http://www.epilepsy.com/

Epilepsy is real and does affect many, many families.  Each story is different and each person is unique!

I write to you today not to complain but to explain.  We are a typical normal family with an added member call Epilepsy.  We believe that this is part of what has been ordained to becopy-of-file_0001 the package that makes up our family.  We call ourselves the #teamgwilson
….and we strive to live each day to the fullest, we try to beat the odds, aim for a
fun filled live, not hold onto what we do not have etc…

Our greatest strength comes from the Lord!  We also find strength in our church family, family and friends and some support systems that we have put in place.

With most disabilities we as humans are normally frightened by it.  It is different…we don’t know what to say, what to think, where to look etc… Just remember that these people are human, and have feelings.  DO NOT treat them different or like they have a rare disease.  DO NOT offer advice when you have no clue what is going on. DO NOT pamper them. DO NOT ignore them when they walk in a room, walk the other way and DO NOT feel sorry.

My husband is one of the strongest men if not the strongest man that I have ever met.  He is a true example of what a life with Epilepsy can be when someone purposes in their heart to live a filled and purposeful life.

We will be writing a 3 part articles this month to share and encourage you all on this subject.  To help paint a full picture the articles will include….what is like to be the wife of an epileptic, what is like to be the son and grow up with an epileptic dad and then what is like to be the EPILEPTIC person.

Feel free to let us know part of your story in the comment below.

Thanks for sharing our lives with us!

Lynn A. C. Wilson – Resume of a mother