annoyed with my seizures

[seizuregirl]

Hi there! My name is Ali, and I've been having seizures for about 6yrs, had quit my job of 11yrs because of them.
My whole family thank, goodness, is VERY understanding of them

 

[Nakamova]

Hi Ali, welcome to CWE!

It's great that your family is supportive and understanding. That counts for a lot when dealing with epilepsy. And yeah, seizures are annoying. Are yours uncontrolled at this point?

Best,
Nakamova

 

[valeriedl]

I also had to quit my job when I found out that I had epilepsy. I had to move back home with my parents too.

Luckily my family is very supportive of me too!

 

[seizuregirl]

yes, unfortunately they are uncontrolled, with no clue as to what triggers them. I've had EEG's EKG's, MRI's, CAT scans, and 2 separate video surveillances that lasted a week the first time, the 2nd time it was about 2 wks and no answer for any questions really. I've been looked at by at least 5 doctors, 2 in my hometown, and 3, 150 miles away at the state university. I had brain surgery last november hoping that the confidence that the neurosurgeon had about the outcome of the surgery would actually be true, that I would be able to drive, get a better job, have better self esteem etc., and honestly, I believe that had I known what my life would have been like after the surgery, I wouldn't have had the surgery done. My family and I will joke about my memory loss because of the surgery, and it's done with lightness and in good humor, it's actually fun to try and 'out smart' my family on quips of not having long term memory. But up until the last month, I felt like such a BURDEN to everyone because I had no income to help out with bills, pay for gas and food when we went on trips to the university, i'm on my older sisters cellphone plan and I hate not being able to pitch in $20-$30 to help with the bill. Before I was diagnosed, I had a great savings account with no bills really and my sisters would come to me when they were low on cash and they needed gas money & what not, I was happy to help them out, and now, I can't do anything except ask my Father for money, since I live with him, and hope he has enough cash on him and he can make it till payday with what he has left. Last month, after fighting Social Security for the past 4-6 months, I won my case against them! They're paying me monthly now but they owe me about $4,000 in backpay and their hmmming&haaaing about paying me since my father has a good job with good pay working for the state, they believe that I don't need to be paid it since he's paid for everything willingly and will continue to do so, even if I wasn't able to get Social Security. Wow! That was pretty long! ^o^

 

[RobinN]

Hi Ali -
Welcome to CWE.
My daughter has a seizure disorder, but it appears to be controlled at the moment. She isn't driving either, but she is working and going to school. She takes public transportation every where she goes, unless I am going out then we carpool

I am sure there are jobs around the house that you can do to help out the family. I am also sure that if you think about it, perhaps there are small jobs you can do for others. One has to be creative to think about what that might be, but there are a lot of opportunities on the computer and doing odd jobs for neighbors.

I am sorry that the surgery did not produce the outcome you expected.

I am glad that you decided to join us here and I agree with your title...though I have never had one I am sure my daughter would agree that seizures are annoying.

 

[ajax]

annoyed?- don't you think that's being a little harsh?

 

[Cint]

annoyed?- don't you think that's being a little harsh?

No, I don't think it is harsh. I'm in the same boat, except I'm much older and have had refractory seizures (CP and TC) for 30 years. I've had an unsuccessful LTL and the VNS and still have seizures. So not being able to drive, remember, having to depend on others, and still suffer from seizures is very annoying.

 

[stephanieholly]

Its awesome that your family support you xxx sorry about the job :/ x I havent ridden my horse in aaaagges because of my seizure (although I dont think ol' horsey minds the holiday!!!! ) x

 

[ajax]

Cint, I'm with you too. I was being facetious. To me annoyed is only slightly beyond irked. I'm totally frustrated, fed up, literally sick and tired of seizures. Sometimes, indeed, they fall into the realm of inconvenient and annoying, but generally, as a whole, for every reason you mentioned and more they are leaps and bounds beyond an annoyance or a bother. To me something that's annoying can be lived with. As we know, and statistics have shown, recurrent seizures can, in fact, be incompatible with life. They are, at the very least, irritating.

 

[seizuregirl]

In all honesty, I was being nice about how my seizures make me feel. If I were to actually say how they made me feel day in and day out, there would be ALOT of swear words listed, and I didn't want to offend anyone. I get scared doing the simplest things, an example, my older sister had a baby 6months ago, and my younger sister had her son 3months ago and I haven't held my older sisters son at all because i'm scared of dropping him if I were to have either what I call a 'normal' seizure that i'm only aware of when I loose bladder control, but I don't loose bladder control every time, but they've been described to me that my whole body will tighten up, as if I were cold and I don't respond to anyone for about 5min or so which my family recognize and tell me after because I don't remember/know I've had one, or a grand mal. My grand mals that I've had were described by my family as not the typical type of falling on the floor and your whole body shaking, mine have my arms flying all over the place and my legs start 'kicking', kind of like a messed up jumping jack and again, I'm not aware that I've had one. My younger sisters baby I held for five minutes, and I was watched by my brother-in-law the whole time, and when I gave him back, I was shaking for about 5-10min I was so scared. Even taking a walk with my twin around the neighborhood I'm scared of, because of having one, loosing bladder control, and then I have to walk around the neighborhood with soiled pants, and having people see that is embarassing.

 

[CrunchyFrog]

:agree:I can completely understand how frustrated you must be. I feel frustrated with my Epilepsy and I haven't had half the problems it sounds like you've had, so I could imagine what you must be going through. It sounds like you have a great family which can make a huge difference.
I'm lucky because after been medicated I still have the occasional seizure while I sleep, but have been able to work. When I was first diagnosed I had to stop working, and it's totally frustrating. I felt bored and horrible for not being able to contribute anything. And I don't know if this just happened to me, but I found some people thought that because I didn't look sick I just didn't want to work.
I hope they do figure out your triggers, and it's a shame to surgery did work out. But I think from what I've read in this forum so far (I'm new too) you're surrounded by people who understand what you're going through and will be happy to talk and offer support or maybe even listen to you rant if you feel the need to vent :hello:

 

[ajax]

Seizuregirl, I'm a twin too! And my name is Ali. My post wasn't intended to question the accuracy of using the word 'annoying' to describe seizures. i was just giving you grief. I can be sarcastic to a fault some days.

Hope all is well with you. Cheers.

 

[KyWells]

My seizures are not nearly as bad as yours. But I agree describing me true feelings about then would too, involve a lot of swearing and curse words. Annoyed it not strong enough. I understand completely about being a burden to family members. They are so supportive but sometimes you want to be able to do that one thing without them asking you "are you okay". If my mom hears a loud sound she will scream my name until I respond thinking that I had fallen into a grand mal. I guess we all understand some way or another about what each other is going through. And trust me you are so not alone in this journey.

 

[RobinN]

yup - when I hear a crash I ask Rebecca if she is okay. If there is a siren that I hear, and she is out, I text her to see if she is okay. She knows I love her and only am concerned. We don't make a big deal about it, but she certainly wouldn't want me to ignore an emergency either.

A burden is when you are doing something that is completely in your control and you are making poor choices. A medical condition does not create a burden.... ever!

 

[ajax]

I love your posts, Robin. You're a phenomenal mom.