Married To Epilepsy

Married To Epilepsy

Most of the blogs I write will be about the kids but now and again I will write a piece about other aspects of my life.

One particular aspect is that my Husband has epilepsy and at the moment it is not going so well. When Rob and I got married, I didn’t really have any idea of what I was in for; I had seen him have seizures before but there was more to the condition than that. The epilepsy that affects my husband puts him in the  top extreme cases in New Zealand. In the first 3 months of marriage I was pretty much thrown in the deep end and had to swim or sink. Eventually the epilepsy was a bit more under control.

However in the last few months things have progressed badly to the point where even his specialist is concerned; at the moment my husband sleeps a lot because of the amount of drugs he takes. Which has left me in charge of keeping the house clean (fail), trying to get the kids  dressed, fed and bathed every day.

With all this on my shoulders it doesn’t leave much time for me; until things get better I have to put myself to the wayside – thankfully I have friends and family that have been a real help and I am so grateful for.

Epilepsy is very rarely something to take lightly, sometimes there are cases which are controlled; on the other hand sometimes – like in my husbands case they are doing there best just to survive. Just because you may not see them have a seizure or in many cases they look like any other “normal” person does not mean that snap judgments can be made about their life.

I love my husband very much, our kids love their dad – but I hate what epilepsy does to my husband and that at the moment with how serious it is, I hate what it is doing to us.

I’m not normally one to put my bad stuff out there as I’m not interested in pity parties, but some days it feels like a constant fight to just get through the day; some of the things that make me smile are the hugs and smiles from the kids – or when the boys are actually getting along.

 

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5 thoughts on “Married To Epilepsy

  1. Hello there,
    For starters, you’re not married to “epilepsy”; to your husband who just happens to have epilepsy.

    My name is Paulette Le Pore Motzko and I was diagnosed with complex partial epilepsy at age 9 and I just became a senior this year.

    I’ve almost died 5 times in my life and I used to be in a wheelchair and I am not now.

    you need to be your husband’s best advocate.

    I’m the former CEO & founder of The Epilepsy Connection & Director of The Epilepsy Foundation affiliate Guy created from nothing in Orange County California .

    I helped people in Orange County, California and various counties and other states as well as three countries.

    Doing the job was highly stressful and I’ve decided I can always be a disability Advocate but I didn’t have to work so closely with clients. Even though I helped out with people with Better Lives, which was highly rewarding.

    I would check out your local Epilepsy Foundation to see if they have resources for you and also check out CURE which is Citizens United for Research in Epilepsy. They have all kinds of wonderful resources.

    You think you feel bad? How do you think your husband feels?

    Their are better, state-of-the-art medicines to control what he has and obviously it sounds like you need a new doctor.

    Go see the best epileptologist or neurologist that your insurance can afford.

    Find out exactly the type of epilepsy he has and ask for every available resource.

    If he has partial seizures check out the drug Vimpat by UCB- because the success rate is over 80% and the side effects are minimal. What you want to do if you want to maximize our control he is but you also want to minimize the side effects it’s a balancing act. I hope that what I told you here helps you. My name is Paulette Motzko I would love to stay in contact with you to find out how he does.

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  2. As a fellow spouse to a person with epilepsy- I understand some of the worry and concern that faces you. My wife’s condition is not as severe currently, but it has been a great cause for concern and overall stress/anxiety. I hope you find that people around you support you more often than not. Speak out to friends and family to tell them what you need to succeed in the hard times- and ask for help. Many want to help, but don’t know what you need.

    I wish you the best of doctors, the best epileptologists around, and hopefully decreased problems and side effects in your near future!

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  3. Interesting that several are disagreeing with the term “Married to Epilepsy” when really it shouldn’t be any other way, IMHO. Being married to a person with Epilepsy, like many chronic conditions, means you accept that condition and the issues that come with….. Or you don’t. If you don’t, then you often don’t stay married very long. Being married to a person with epilepsy means there is something else, always and forever, in your marriage. It isn’t a person a critter or a hobby. That thing affects all aspects of the marriage to a greater or lessor extent depending on the type of seizure activity. It is something separate from your loved one and yet part of them. If your loved one takes meds they affect memory, mood, energy etc. You accept that also and manage the side-effects as appropriate. If your loved one has surgery for brain lobe resection or to have a DBS system installed, there are side-effects from that. They also becomes part of your marriage and you don’t get a vote in that matter. If you want to have a family then you must be aware of the potential for birth defects and other issues brought on by this thing in your marriage. This thing in your marriage will affect when you go to movies or perhaps if you go to movies. It affects what recreational activities you can enjoy as a family and which must be avoided due to affects on meds, seizures, stress etc. When this thing in your marriage takes your loved one and twists them into a ball and has them in convulsions on the floor and drooling you clear things out of the way and wait for things to end then encourage your loved one and do what you can to banish the fear in their life from the thing that just had ahold of them. Having a spouse with Epilepsy is not like having a cold that you just endure until it’s over. You have a spouse and you have something else that comes in periodically and turns a married life upside-down or perhaps alters it forever with no input from you or your spouse. My wife has had Epilepsy since a child. I knew it when I married her. It was under control with meds for the first 5 years or so of our marriage and then odd things began to happen. Car accidents with unexplained causes. Behavior incidents that didn’t fit a pattern. Little did I know that the thing was creeping into our marriage. It slowly turned our marriage and the family upside-down. Now, I could have chosen to leave my wife and children (I was encouraged to do so), or I could help my wife and our family come to terms with this thing. I chose the latter. It has meant accepting this other thing in our marriage that I hadn’t really planned on (because things were under control). It meant getting her help, sometimes in spite of medical advice, before the thing took over her life and by extension our marriage and family. Now, the help had side-effects all of it’s own. Yes, the seizures were eliminated, but my wife was forever altered as a result. In some ways significantly, in other ways subtly. This has altered the marriage between my wife and I. So yes, I am married to my wife and to this thing that has stirred us up and spit us out. I intentionally keep the two separate as I do not want my wife to be seen through the lens of this thing. It happens to be here, I have accepted it into life but I don’t have to like it. I want my wife to be the wife I married with all her foibles, goofiness and love. I chose to see her as having Epilepsy not being an Epileptic. But to do that I have to accept the Epilepsy and make it part of my life and marriage also. So, yes, I’m married to Epilepsy. It’s a rather loveless marriage really and a bit out of convenience but I’ll put up with it to keep my loveable, huggable wife.

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