Posts Tagged ‘advocacy’

21
Feb
2021

Since I promised that post, here goes nothing.

categories: personal; word count: 330 words

I had my first seizure in April of 2019 when my mother was still alive.

It woke me up from deep sleep, and I went through the whole aura, seizure, and postdrome.

Since this was my first seizure, I didn’t know what was going on and felt like I was dying. It lasted a few minutes, but my sense of time was heavily distorted — to me, it felt like absolutely forever. And symptoms of it left as quickly as it came on, although I felt exhausted at the end of it. For me, the aura often involves experiencing an intense feeling that does not quite match the situation, and the seizure itself feels like my brain is being shocked or an egg that is thrown against hot concrete to cook. I can vocalize during these, although the people that I have vocalized to have told me that I seem “off” having these conversations. I don’t want to vocalize while I’m having them though, not unless I have to, because it feels like I’m taxing the small part of my brain that is completely aware of what is going on. I can also do very basic things during some of my seizures, which perplexes me. Others, I have to wait until it passes. There is no rhyme or reason.

Sometimes I can go months without a seizure. Other times, I have multiple seizures in a month.

I also do not have any involuntary motor movement. However, I am known to hold my head with my hands and rest my elbows on my lap, and the quieter my surroundings are when they can help it, the better. Almost all of the time I still feel the peculiar emotion that was present during my aura, although by the end of the seizure my feelings have returned to normal. Being on Gabapentin for migraines has really helped me out.

Another feature of my seizures are racing thoughts, which also completely stop when the seizures stop.

20
Feb
2021

This is why I am not playing Cyberpunk 2077.

categories: personal, RPGs, survival horror; word count: 188 words

When Cyberpunk 2077 came out, I was initially excited to play the game.

However, that was short-lived when I found out that a certain part of it caused people to have seizures.

I am epileptic myself, although I retain awareness and consciousness during all of my seizures, and I have no involuntary motor movement. Even though I do not appear to be photosensitive, it wasn’t — and isn’t — a risk that I was (am) willing to take, especially if I had a seizure that… laid me out, so to speak. Even though that was almost immediately patched and friends of mine have told me that that section of the game is a lot “tamer”, I still haven’t played our copy of Cyberpunk 2077. I’m waiting for a lot more information to come out about it, especially that part of the game. My seizures feel like something is shocking my brain, like my brain is an egg thrown onto hot concrete, immediately cooking. If I can avoid them, that would just be awesome.

That also reminds me that I would like to write a post all about my epilepsy since why not?

30
Jan
2021

My history with depression to diagnosis.

categories: personal; word count: 423 words

To delineate before I get further into this, I did not experience postpartum depression with either pregnancy.

It can be safe to say that my body did not, and does not, like even the idea of being pregnant… and although I would not trade either of my sons for the world, my body’s abhorrence at pregnancy goes beyond the normal difficulties that someone who is or can get pregnant might face. In my case, depression was more subtle and did manage to sneak up on me before I knew for a fact that it was actually depression. After my youngest son’s birth, I found myself participating less in activities that I normally would, such as hobbies and interests. This was even when I could do so or would have had the time to do so. I kept making excuses about how busy I was, having two young children and all, but my difficulty engaging in these hobbies and interests even after both boys had gone to bed for the night continued to grow in intensity until I was nearly always making excuses not to do the things that I formerly enjoyed and had quite a long history of liking.

This was the primary symptom for me, as well as not really having any “high moods” to speak of.

When my old neurologist put me on 20mg nortryptline to see if that would help with my migraines, it had a positive effect on my anxiety levels and my mood. I made an appointment to be seen by my primary care physician to discuss this with him and have him rave him raise the dose, which he did to 50mg and then at my request to 100mg. I will actually be trying the 100mg the next time I can fill for this med. Taking this medication, I’ve been less anxious, and my moods have generally been markedly more positive than they were rather than “flat”. In addition, I have been able to sleep better than I was. I’ve also begun to want to resume participation in hobbies and interests of mine, particularly once the kids are in bed for the night and I can have some “me time”. I don’t see a problem with depression or being candid about it, and I do wish that there weren’t this stigma around mood disorders or accessing care for them. In the United States alone, it’s still an extremely bad thing in certain circles (“you can just tough it out, you should just tough it out”, so on).

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