New Struggles

(Editor’s Note: This afternoon, we welcome a new blogger, Kristen, who joined our site this afternoon. You can learn more about Kristen by visiting her profile here.)

My name is Kristen and my fiance, Sean, began experiencing seizures in January 2011 at the age of 32. At first they were classified as non-provoked and non-epileptic, therefore he was non prescribed anti-seizure medication. Now, nearly 18 months and six seizures later, his doctor believes it is epilepsy. That word alone scares me. Still, I am relieved that he is now diagnosed with something that can be treated. Before, we were trying to find patterns and draw conclusions, partially in denial.

He is now taking medication a generic brand of Keppra. As some of you may know, this medication has side effects that include exhaustion and irritability. Not to mention the fact that a diagnosis of epilepsy alone is a lot for him to deal with. Pre-diagnosis, just with the seizures alone, he already felt he was losing some freedoms: limited driving, reduced caffeine intake, no alcohol, healthy diet. He has been taking the medication for a little over two weeks now and is extremely moody. He snaps at me a lot and generally seems anxious and depressed.

I want to be the best partner and supporter I can be for him because I know what he is going through is difficult. But I am having a hard time being patient with his mood swings and erratic behavior. Mostly the type of support he needs from me is emotional, and I guess I need a little emotional support, too.

Yesterday he disappeared for three hours. He left in his car without saying goodbye and when I called him, it went straight to voicemail. After about an hour, I became extremely panicked. I must have called him more than 50 times. I sent several text messages. I even emailed him. I got on the phone to call his parents to see if they had heard from me when I saw him pulling into the driveway.

I ran downstairs and lost control. “Where were you??? Why is your phone off??? What are you doing leaving like that and turning your phone off when you have SEIZURES???”

He said he wasn’t sure about our relationship anymore, that he had doubts. “What the heck?” I thought. “Where is this coming from?” He said things are just too difficult. And then he sat there silently, almost numb, and then went to bed. It was only 8 p.m.

It was just such unusual behavior for him. Sean is someone who is very deliberate, very organized, not over-dramatic. Is this the pills talking? Is he really getting cold feet? Why would he just leave like that? Why is this happening: the seizures, the diagnosis, the sudden uncertainty?

I’m still reeling from what went down yesterday and trying to figure out my role in all of this. How can I be the best caregiver I can be in this situation?

5 thoughts on “New Struggles

  1. Avatar of DeniseDenise

    Hi Kristen–I’m so glad you joined us and jumped right in. I love that! :)

    Oh, my gosh, this is sooo much for both of you to digest and understand. I think it’s hard to understand how a diagnosis can fit into a day as well as into a couple’s life. I would imagine Sean worries that his diagnosis may change how you feel about him and your future together.

    The great part of our site is that everyone has a story about making a life after diagnosis.

    Have you and Sean talked about seeing a counselor who can help you sort through all your adjustments and emotions? It might help to work with a professional who can help you both with communication and coping strategies.

    One last question: What would you like your role to be?

    Reply
  2. Trish

    Kristen, Welcome to the site! This is a very supportive group who all deal with a variety of diagnoses and conditions. I care for my brother who has had epilepsy his entire life. He was diagnosed when he was 5 or 6 and has been on lots of medications as well as many other treatments. Robert is now 46 years old and is in the 30% of the epilepsy population whose seizures can’t be controlled.

    It is quite common to have to try out different medications & dosages to see what works to control the seizures. Many of the medications have side-effects just as you described. Isolation and depression are side-effects of the medications but also from the diagnosis. Epilepsy is much more common than people think and there are lots of organizations which might be of help to you.

    I don’t want you to think you are alone or you have to go through this alone.

    You’ve both been hit with a new diagnosis and new medication which is a lot to process. Reaching out here, asking for some help, was a great step. What’s helped me the most in trying to help my brother is educating myself about epilepsy and connecting with others in a similar situation.

    I frequently blog on caregiving.com and have added resources for epilepsy to the National Resources group on this site. I also have my own blog http://www.robertssister.com which follows the story of Robert and has links to resources as well.

    Hang in there and please keep us posted on your situation. Let me know if you have any questions about epilepsy or medications and I’d be happy to help you.

    It’s wonderful to meet you. Take care.

    Reply
  3. Avatar of ejourneysejourneys

    Welcome, Kristen! This is an extraordinary site and a very nurturing community. It has truly helped me hold onto my sanity. :-)

    In addition to what Denise and Trish have said, figuring out how to be a caregiver and how to fulfill that role is a huge challenge in and of itself. There’s no rule book. With the SNAFUs my partner and I have experienced, I kept asking myself (and other caregivers, both family and professional), “What am I missing?” I had problems with my partner on one hand and problems with the system on the other.

    We’ve had rough spots to the point where I was talking with my lawyer and with my local sheriff’s office. (Misdiagnoses were part of the problem. My partner has MS that acts like traumatic brain injury and that can sometimes look like schizophrenia.) Since then, we’ve picked up good communication tools and my partner has become more accepting of her diagnosis. But it took time.

    Please be patient with yourself. You are both going through a huge adjustment process, with so many emotions out on the table, and all of them are legitimate. All that uncertainty comes with the territory. All those doubts and self-doubts also come with the territory. This is a learning curve for you both.

    Take care. Keep breathing. As Trish said, you are not alone.

  4. Avatar of decafaholic

    Wow, you certainly are going through a lot. Your story reminds me of the movie 50/50. Did you see it? The main character is diagnosed with a rare cancer and has a 50/50 chance of surviving.

    We see him doing pretty well, taking it all in stride, and then one night when his friend is driving him, he orders him to pull over and get out of the car, then he proceeds to lock his friend out and absolutely lose his shit, crying, screaming, banging the steering wheel. All his anger and frustration and grief came spilling out at once.

    That sounds a lot like what your fiance did. I’m sure you were worried sick. Anyone would be.

    For some reason, getting in the car and driving is what a lot of people do when they don’t know what else to do. When I was in my teens and experiencing severe mood swings and depression, I went for drives out in the country to get away from everyone and everything. Something about being behind the wheel with the road in front of you makes you feel in control.

    Thank you for posting. We are glad you a a part of the community.

    Reply
  5. Avatar of decafaholic

    So…awkward silence…I just checked the post date. This is embarrassing…um, disregard that oh so helpful advice lol!

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>