This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!
I met my wife Heidi when I was 12 years old. We grew up on the same street together but we didn’t hang around with each other until we both were going to the same college. She was dating someone else. They would come over and she always brought her dog who also had epilepsy. We ran into each other 20 years later at a bank and started dating and then we moved in together.
I had never seen Heidi have a seizure until we started living together. At first, it scared me and I was always worried about her. When she would have a tonic-clonic seizure I would call her son up to come over. Even though I knew what to do, I didn’t feel confident so I would call him. After talking to Heidi she finally convinced me that I needed to stop worrying so much. She was right; worrying didn’t do any good, it just made things worse. It created more stress.
Related: Caring for a sick spouse
Supporting my wife
As a spouse, I have to help around the house more often. When she is sick I cook since she can’t stand over the stove and I do a lot of the housework when she can’t.
I have to listen for her when she takes a shower and she has never driven so I do all of the driving. When she has a seizure I get her vagus nerve stimulator magnet and swipe it over her chest to help the seizures stop. When the seizures are really bad I give her rescue medication. I get her to bed and stay with her until they have passed. She hasn’t had any tonic-clonic seizures in years but she has a lot of myoclonic seizures. In fact, just yesterday she had about 80 of them in one day. She took the rescue medication and they stopped fast.
Another thing is when you are living with someone who has epilepsy you have to be there emotionally for them too. She doesn’t get depressed often, but once in a blue moon she does and being an emotional support helps. She has taught me how to be good at that. I have multiple sclerosis (I was just diagnosed a few years ago). She has been a great support for me, and that has taught me a lot on how to help someone with an illness. When I am having a bad day she is usually having a good day, so it always seems to work out.
She is a very strong person, but when you live with a person who has epilepsy you have to learn to be strong also. You just have to adjust to make it a lifestyle to look after them when they have seizures. Every time you turn around in life you are faced with something. So, you can chalk it up to just one more thing, but you have to commit. Why? Because you love this person and everybody needs love. I don’t think of her as an epileptic. I think of her as a person with an illness. I think of her as “her”, a strong, caring, loving person who has a lot of compassion. I am very proud of the Epilepsy Education and Support page she started to help others.
Living with a spouse with epilepsy has become habit and/or routine. People with epilepsy don’t like pity. Especially her. She insists on being as independent as she can, even though she had to stop working because of it. That is another thing: if you live with someone who cannot work because of epilepsy it can make it more difficult financially. You just have to learn to be more frugal. I admit it can wear me out, especially since I have multiple sclerosis but I have learned that if you are taking care of someone with an illness you have to focus on yourself also because if you don’t you won’t be able to help them. That is one thing she has taught me also. She is not used to be hovered over when she is sick. Her family taught her to be very independent, but she does accept the fact that when she needs help not to be ashamed to ask for it.
When you love a person with epilepsy it’s easy to help them, it may take extra work, but it’s worth it because you love them and loving Heidi is easy.
Share your story