I remember the first time I saw those many medicine boxes in Mark’s bathroom cabinet. We hadn’t been together for so long, and I was very interested in the medications he was taking. I asked him and he said he was taking them because of the seizures. I didn’t really understand what he meant by that, he said it was under his control, so I didn’t take much care of it. I was glad that Mark shared this sensitive personal information with me, even though we were still at the very beginning of our relationship.
Mark had seizures in his late 20s that could no longer be controlled with medication. True, these were just small attacks, but when I first saw such a malaise, I was completely scared. Mark couldn't talk to me, he made strange noises and his hands moved strangely sometimes. From that moment on, I knew it would affect our relationship. When epilepsy is controlled, you never think about it. But when epilepsy breaks out uncontrollably, causing 6-8 seizures a day, all you can do is think of epilepsy every single day.
The seizures did not want to stop, so it affected his work, his home, his personal life. At work, his co-workers did not understand this strange behavior, so after a while he was asked to go on leave. He couldn’t develop himself in his workplace, he wasn’t given the opportunity to show his talent, he could no longer focus properly on his tasks, by then everyone in his workplace already knew what was wrong. I even talked to a lawyer for Mark, but he just said there was nothing you could do about it unless Mark was kicked out for his seizures.
Mark couldn’t drive anymore, so I had to get him to work. It was getting annoying to me, which affected our relationship and my life as well. For me, this is a thief who stole my happy, always smiling husband sitting in an otherwise just armchair and part of our relationship.
My husband became more aloof, playing video games for several hours when he came home, having a hard time talking to me about his epilepsy and his feelings. He could no longer focus on our relationship and our long-planned wedding.
I had a hard time dealing with all this. I had some friends, but I felt like no one understood my problem. Yet how could they understand? I didn't even know what I was going through now. I didn’t want to go into communion with Mark for fear of putting me in an awkward position if he had a seizure in front of the others. I hate to have to say this, but I really felt that at the moment. We recently moved to another state, Mark received better medication, and his seizures have been controlled again since then.
Looking back like this now, there are a lot of things I would have done differently. I waited too long for Mark to receive therapeutic treatment for his mental problems, and I waited too long to find a relationship therapist for ourselves.
I recommend that people in shoes like me seek help from friends and acquaintances and come up more often. I didn’t really keep in touch with my friends at the time, even if I felt isolated, lonely.
Visit epilepsy help groups that are not hard to find on the internet.
I also recommend that anyone who lives with a person with epilepsy sometimes takes care of themselves: good eating habits, a fit lifestyle, enough sleep. I’ve learned that the more stressful an experience is, the more self-care it takes to be healthy. You can also help with relaxation exercises, massage, drawing, painting, crafts.
Both people with epilepsy and those who support them can sometimes feel overwhelmed, hopeless, and helpless.
Epilepsy affects the whole family. One is not the fault of one person and not the individual problem of someone. Just as you have to support your love on this difficult path. The more you pay attention to yourself and do it in this matter, the better you will be able to care for your love.
Finally, a hint of humor is always important. Epilepsy can enter your life like an unwelcome guest and be the center of it all. But you can still find humor in it! Laughter, joy has very good stress-relieving properties, and it also eases this complicated situation in which you are. In closing, remember that there is always hope. Both people who live with epilepsy and who stand by it can sometimes feel overwhelmed, hopeless, helpless. Research for help. Keep looking for support from doctors, friends, and the community. Always support each other because you are both in it.
source: http: //www.goodtherapy.org/blog/lif ...
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