Frustrating

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So, I’m new to this support group, posting in forums, really even reading them thing. I’m typically a very private person but I have no one to talk to who can relate to what I’m going through. I apologize for the long story ahead...just need to get it off my chest. I was seizure free for 5 months and 20 days before I had my most recent one (Nov 17). I was 10 days away from being able to drive again only for my freedom to be ripped away when it was right at my fingertips. I feel so helpless like I can’t do anything for my daughter and have to rely on everyone around me in order to be a capable parent. I didn’t have my first seizure until 2/2018 - I was 28 years old. No family history. No previous history for myself. No warnings at all. I went seizure free from that point until 6/2019 then had my last one in 11/2019. It’s just been very hard to say the very least. I just want to be able to be a mom to my baby girl and feel like I can take care of us on my own again. I miss my freedom. I miss grocery shopping. I miss driving myself to/from work every day. I miss that one on one time with my girl after daycare before we got home. I’ve missed out (or will be missing out) on driving her to school for her entire year of Kindergarten. I feel robbed of so many experiences. I feel like SHE has been robbed of the same experiences as well. Absolutely heartbroken. I know I have to find the things in my life to be thankful about (like my daughter - who I am eternally grateful for...she is 100% my sunshine) but damn, it’s a lot easier to be mad at the world than it is to be happy right this second. Needless to say, I’m back on the countdown until I can drive again. Almost two months down, 4.5 more to go. Send me lots of strength y’all.

Comments

Hi, Thank you for posting and

Submitted by Anonymous on Tue, 2020-01-07 - 09:17

Hi, Thank you for posting and we understand this can be very frustrating to experience. Talk with your doctor about your concerns and frustrations and review any changes in seizure frequency/types, side effects, symptoms, moods and behaviors, to determine what individual treatment plan is best for you. Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone. However, it’s important to remember that you are not alone, and we are here to help support you. One of the most important things to help you live with epilepsy is to find a support network.Learn more about your community support options here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-healthA key part of managing seizures and epilepsy is knowing how it can affect person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living ,to learn more about resources that are available & when help is needed. Review our women and epilepsy section of our website,to learn more about issues that are unique you as a woman living with epilepsy: https://www.epilepsy.com/living-epilepsy/women Create an individual seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around you to understand what to do if you have seizure. Use a journal or diary to track seizures, record medical history, set reminders, manage medications, side effects, moods, behaviors, triggers and health events that may affect seizures and wellness, which can be shared with your healthcare teamshttps://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Review our seizure alert device factsheet with your doctor, to see if a seizure alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfConsider participating in a seizure and lifestyle management programs, which can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life: https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-networkAdditionally, you may always contact our Epilepsy and Seizures 24/7 Helpline: epilepsy.com/helplinewhere trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org.

Hi, Thank you for posting and we understand this can be very frustrating to experience. Talk with your doctor about your concerns and frustrations and review any changes in seizure frequency/types, side effects, symptoms, moods and behaviors, to determine what individual treatment plan is best for you. Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone. However, it’s important to remember that you are not alone, and we are here to help support you. One of the most important things to help you live with epilepsy is to find a support network.Learn more about your community support options here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-healthA key part of managing seizures and epilepsy is knowing how it can affect person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living ,to learn more about resources that are available & when help is needed. Review our women and epilepsy section of our website,to learn more about issues that are unique you as a woman living with epilepsy: https://www.epilepsy.com/living-epilepsy/women Create an individual seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around you to understand what to do if you have seizure.  Use a journal or diary to track seizures, record medical history, set reminders, manage medications, side effects, moods, behaviors, triggers and health events that may affect seizures and wellness, which can be shared with your healthcare teamshttps://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Review our seizure alert device factsheet with your doctor, to see if a seizure alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfConsider participating in a seizure and lifestyle management programs, which can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life: https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-networkAdditionally, you may always contact our Epilepsy and Seizures 24/7 Helpline: epilepsy.com/helplinewhere trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org.

Hi, Thank you for posting and we understand this can be very frustrating to experience. Talk with your doctor about your concerns and frustrations and review any changes in seizure frequency/types, side effects, symptoms, moods and behaviors, to determine what individual treatment plan is best for you. Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone. However, it’s important to remember that you are not alone, and we are here to help support you. One of the most important things to help you live with epilepsy is to find a support network.Learn more about your community support options here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-healthA key part of managing seizures and epilepsy is knowing how it can affect person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living ,to learn more about resources that are available & when help is needed. Review our women and epilepsy section of our website,to learn more about issues that are unique you as a woman living with epilepsy: https://www.epilepsy.com/living-epilepsy/women Create an individual seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around you to understand what to do if you have seizure. Use a journal or diary to track seizures, record medical history, set reminders, manage medications, side effects, moods, behaviors, triggers and health events that may affect seizures and wellness, which can be shared with your healthcare teamshttps://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Review our seizure alert device factsheet with your doctor, to see if a seizure alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfConsider participating in a seizure and lifestyle management programs, which can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life: https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-networkAdditionally, you may always contact our Epilepsy and Seizures 24/7 Helpline: epilepsy.com/helplinewhere trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org.

Hi, I'm new to this illness,

Submitted by Terrie_5e1be6a5b6056 on Sun, 2020-01-12 - 23:03

Hi, I'm new to this illness, I to was just told I'm having small seizures. As a mother and a current cancer patient. I understand how you must feel. It's hard and frustrating I have know idea were to start.

Hi AJCsMOM, I'm new to this

Submitted by dancing4yeshua on Fri, 2020-02-21 - 17:15

Hi AJCsMOM, I'm new to this also. Keep your head up and focus on what you can do. I know it's difficult. I have a brand new Pickup truck that I can't pay for now, much less drive. That was the one thing that kept me calm. I learning to find new interests but struggling. My children are grown and have their own lives. I feel like I am a bother to everyone I know. We have to keep the positive thoughts about us though. You can do this, because you have your daughter to care for. You are doing an awesome job of taking care of her and yourself. You are a blessing and you're only proving to your daughter that you are strong by pushing through the circumstances. Knowing the feeling of loosing the opportunity to drive, ripped right out of your hands. My chances of ever driving again are minimum. I've been on 3 different meds and nothing so far has worked without major side effects. I don't know if I am helping you or not. Just Please, "Don't give up".