my journey with epilepsy (blog)

[emily]

I thought I would create this thread for any random musings I have or when I'm feeling down and just want to vent (I know a vent thread exists, but I thought a smaller thread to keep my thoughts together might be nice)



mainly this thread is going to be for me to.. well, share my feelings about my life and the world. there will be happy posts, sad posts, random posts etc.

[emily]

I'll start by talking about today, I woke at 3 A.M and had a seizure, and then afterwards felt rough. really rough.

I skipped breakfast, (really not hungry at all, not in the slightest), and I'm now attempting to pull myself together and get on with my day but still feel icc

[emily]

so, um, I told you this thread will be random stuff, so uh, here we go.

this afternoon a friend of mine bought me round something she'd made for me
unfortunately, I didn't have much of an appetite, but I tried to eat it for her sake and had a few bits of the chicken she made, but was still sadd at the amount I wasted.

rang her after and told her it was nice, (why I did that, I shall never know!)

I'm feeling upset tonight, and a bit emotional. to be honest I don't know if it's because of the whole situation with the food, (I get like that with wasted food), or if it's more I've not been doing well this past week and it's getting on top of me

either way, I think it's going to be early to bed tonight

[jenny]

Sympathies Emily (my oldest granddaughter is called Emily but she's only 12 so younger than you). I assume you're on medication for the epilepsy? Having seizures anyway doesn't sound like a lot of fun.

[amanda]

No, I have them though the 'petit mal' version, but even so, a big one that seem to happen overnight/early hours for me isn't pleasant. I'm lying in bed basically paralysed and unable to move, while a 'wave' of something rages in my throat so I also can't talk.

[emily]

yesterday, I fell asleep to a weird light (a weird purple thing that looked like an elevator wall, not seen it before) but what ever it was I saw didn't distress me.

I didn't have much sleep, was up by 1- no reason in particular, just couldn't sleep.

for breakfast today I had a bacon sandwich. I didn't eat breakfast yesterday, so I really wanted to try something

honestly I didn't get far with it, not really. I did eat, but I still don't have an apetite and it made me quite ill (sick, vomety etc)

I am just waiting for a taxi to come and take me to church

the thing's in walking distance, but it's raining today and I'm not going to get myself soaked. I go to an all women's church, and it's really nice (maybe I will post more about my church later, I don't know)

[crissdee]

At the risk of derailing this thread, an "all women's church"?? I am not a religious man, but I would like to think that any man who observed any religion enough to regularly attend church, could be trusted to treat women with respect. That such a thing would even exist, let alone be a necessity, I find quite disheartening...

[Bondee]

Aug 25, 2024 8:31:03 GMT emily said:

for breakfast today I had a bacon sandwich.

Great minds think alike!

: )

Can you tell when you're about to have a seizure? And is there anything you can do - for want of a better expression - to lessen the impact?

[jenny]

crissdee - it isn't necessarily about respectful behaviour. When men come into an all-woman gathering, it does distinctly change the dynamic. Also, studies demonstrate that many men and boys, even though they may act respectfully towards women, have a degree of unconscious entitlement and honestly don't realize how much they dominate.

[emily]

So, yesterday was a complete mixed bag (I find it interesting I say that it was a mixed bag, when in reality my day was crap).

I went to church in the morning. As I have mentioned above in one of my other posts, I go to an all women's church and it was nice to see everyone again. We did some hymns, and they also went round getting prayer requests from people.

I felt sorry in particular for 1 lady who had to put her dog down (actually, she's doing it today, so she is in my thoughts)

I prayed to eat and sleep well, since I didn't do both for a very long time

Had a seizure after, and I don't think the person next to mne was too thrilled about it. When I was able to sort of be aware, I could tell I'd ruined her day. She didn't tell me direct, her face just read.. do that again, and I'm going to move seats.

The priest insisted I got a taxi home (I walked there), and while everyone else went home, I stayed sat down relaxing, until I did in fact all myself a taxi and go home.

On the way back, we passed a car boot sale. They always have them on sundays in our area, and they are always so busy.

I decided when I got home to skip lunch, skip a drink, just sit down and relax on the sofa

In the afternoon I came on here for a little bit, and I almost lost my mind. I opened up my gmail only to find that a website I'd been waiting to be aproved on for a week or so, had finally accepted me.

For the rest of the afternoon, I was so happy about it. I waved my arms around, cried tears of joy, and even listened to some of my favourite music.

For dinner, I had roasted duck. I was really disappointed, because I was feeling really hungry at the time it was cooking, but when I went to eat, could barely manage any of it before my throat just ..well, told me in it's own way that my body didn't want food.

I did have some of it, but the majority ended up in the bin.

I didn't sleep last night, can't remember the last time I did to be honest. numb hands and purple lights made sure I didn't get any, and I was in the shower by 1:30 this morning getting ready for the day

Threw away my plate of oranges for breakfast, I didn't like them, and.. well. I don't have anything planned today. it is a rainy bank holiday monday and everything is shut. so

[jenny]

I hope you've at least got some leftover roast duck to do something nice with when you feel like eating. I absolutely love Peking Duck, and I imagine that if I could get some thin wraps and plop plum sauce and sliced spring onions and cucumber on them with shreds of the duck, it would at least bear a passing resemblance to the Chinese delicacy.

[emily]

Well, it's the end of the week, and, as far as I'm concerned, good riddence to it.

It's not been a great week- mainly because there's so little on my calendar lately, that my life feels like the life of a goldfish- swimming around in a bowl, but not really going anywhere.

Sleep's been poor, and don't even get me started on appetite. Well, the appaetite thing.. I suppose I do have one, but my body doesn't want me to eat.

Take today for example. I had a plate of pineapple for breakfast, and halfway in to my first slice I just started gagging and choking on it so had to give up on it and not eat it (I have not eaten anything yet and it's now almost 4 PM)

In terms of dinner, well, I was going to have some chicken but I don't know if I can eat...

Yesterday, a building in our road caught fire and there were alarms going off. It caused me a lot of distress (I am not sure I am ready to share why it caused me distress, for now I'll just say a past experience). I think that went (or somewhat went), to not being able to eat yesterday. I had to have someone with me because I just can't handle alarms of any kind- I just can't

I'd love to say heere's to a better week, but... doubtful honestly. I'm surprised at how well I've opened up on this forum. Opening up is not a strong point.

[jenny]

Well I hope next week is better. Would soup be a better option that solid stuff that makes you gag? Soup and ice cream are easy on the throat. If you're up to cooking, soup is easy to make and can be liquidised as smooth as you like it.