The hardest time of the day is dinner time and that is the worst time to have a hard time. Almost every seizure I have had lately has been in the kitchen it seems. Usually at Christmas we make Gingerbread houses and 12-20 dozen cookies. We didn’t make gingerbread houses at all this year and only made sugar cookies once. I made two other batches I think. I decided to make cookies recently and didn’t even get this first batch in the oven and I had a seizure. The place I love to be is where I can’t be anymore.
I don’t remember what happens when I am having a seizure. I just wake up from falling asleep for a little bit confused. Sometimes I hear people talking but I only hear a little of what they are saying right before I wake up. It’s not like going to sleep at night. I can’t say what people observe only what I feel. Before I had no idea when one was going to happen. Now sometimes I have been able to say something to someone right before. It is a different type of seizure than most people have seen because I don’t have convulsions. I have had them 5 times before but since I have been on medicine I haven’t.
I started writing this post last week and didn’t finish it. This week I have had 3 seizures. One while eating dinner, one while sitting talking to Summer my youngest daughter and one while sitting in church this morning. I am so tired. I should be going to stay at the epilepsy monitoring unit soon. I hope the new Doctor can figure something out. God is good!
The next week I ended up having 3 or 4 seizures as well and I just never came back and finished this post. I was reading about how to be a good blogger and it was talking about not writing the way I am writing pretty much. I am writing for anyone who wants to or needs to understand from the point of view of someone dealing with Focal Epilepsy to be able to read. I am also writing for myself. I am hoping to feel better and be able to post recipes and craft stuff like I used to before I cleared my blog out.
When I come out of a seizure episode I am very confused. Sometimes someone is sitting right with me to tell me I had a seizure. I will then ask what happened usually right away but I usually have to ask again later because things are still foggy even then. Sometimes I remember little things leading up to the seizure like reaching for my husbands hand or something like that because I got a weird feeling that something was coming on. Usually I don’t know I am going into a seizure though. I ask a lot of questions everytime I never feel like I understand what is happening and then when we go to the Doctor and they start explaining to him what I do I feel like I don’t know anything that happened.
I hope to be able to post more often it is really hard to find time to write and sometimes hard ro concentrate. If you read I hope you find something you need in my words. God Bless you. Jamielynn
Questions asked and things wondered…. Sometimes I question why people do things or make the decisions they make. Do you ever wonder what people are thinking when they do the things they do? Did you ever ask why someone was doing something or wasn’t doing something the way you would? I used to do this all the time and I am sure I still do. I just started thinking about some specific things that I wanted to talk about. I have been wanting to get on here and start blogging again to get this back up and running. Where do I begin though? My life has taken a way different turn. Before I had so many things to blog about, home schooling, children’s church, baking, cake decorating, making soap, sewing, knitting, crocheting along with other crafts and much more. Now really out of all of those you will see me bake a little and occasionally knitting, crocheting and maybe sew something. If I have it in me I will decorate a cake for one of my kids or maybe a close family member but it seems no one really wants to eat cake so they don’t even ask anymore anyways. Most days I sit alone. My kids are at school and my husband works.
In August of 2015 I was diagnosed with Epilepsy. I haven’t driven since then so pretty much everything has changed in our life just because of that. It scared me and my whole family especially the kids. I stopped doing cakes only wedding cakes at first then big birthdays then I just stopped doing them all together. I will not take orders for anything decorated anymore. I will still do small orders for cupcakes, cookies and such if asked. Nobody really asks though. It is hard to do anything in the kitchen cause I get stressed when people come in there. I need space. It is getting harder to do most things these days.
A long time ago there was this woman I knew who had epilepsy and she had seizures worse than I have. She was on medication for epilepsy but she also took other drugs. She couldn’t drive. She was so depressed she never did anything. She never talked to anyone. I don’t know if she ever left her house. Honestly I don’t know what is going on with her with now. I remember asking how she could let herself get that way.
Boy if I knew then what I know now. Trust me I don’t take any drugs. Before being diagnosed with Epilepsy I had to really be in pain to even take motrin I don’t like to take anything. I try natural things first. It is not easy taking medications for a neurological disorder. I have been through a lot of them and one them made me fall down as soon as I stood up. A lot of them have made me sick and shaky and gain weight. I don’t like them! They are not fun! It makes you feel like not doing anything. So now I know how she felt and she was taking other drugs also so it was worse. I think she took them trying to feel better but it didn’t help it just made her worse. Everytime they change my medication it is starting all over again. As soon as I think things may be getting better the seizures get worse.
Looking in from the outside at someone elses life you can never understand everything. No matter how much you may think you know even if you are their best friend you may not know everything. It isn’t always easy to understand why someone makes the choices they do. Give your friends and family support and prayers. Trust me I wish i could do all the things I once did. The simple things I once took for granted like forgetting a onion from the grocery store and running back to get it or taking my kids to dance class or football practice are actually what I miss more than decorating cakes.
My page is Tangled In Everything and I chose that because I have always done so many different things and I never planned on concentrating on one specific area on my blog. Now I really may talk more about my life with Epilepsy with some crafts and baking here and there! So it will definitely still be tangled up trust me! Thank you for reading and showing interest. I hope you will come back!