How do you cope?

[Beanogirl]

I'm new to all of this. Still waiting on an official diagnosis but they are thinking simple partial seizures. I've never lost consciousness but they said seizures can change and I may have one in the future. I'm not allowed to drive which is very hard with 2 small children and one on the way. I'm stressed about getting to doctor appointments. I'm nervous all day home alone with my kids. We have a brand new swimming pool & I don't want to take them swimming alone b/c of the fear of having a seizure. My kids are young so they don't understand what is going on. I'm finding myself depressed and anxious all the time. I know it could be much worse but I'm feeling sorry for myself. I feel like I have a ticking time bomb in my head & I'm just waiting for it to go off. How do you deal? How did you get your life back to normal after finding out? How is your life different now?



Thank you for reading.

 

[huskymom]

Beanogirl,

Sorry to hear about your waiting game. It seems to always take longer to find something out when you are anxious about it, doesn't it? Here is how I deal with it, and mind you, I started down this pathway at 45! I just always look to the humor in it. Otherwise, I would just be a lump sitting around waiting to see when the next seizure decides to come along. If something happens at work, then bonus! Time off, get to go home early!! I really don't look at it as a disability, just one of those things that can be a bother, kind of like a hemroid! I know that isn't spelled right, but who cares right? I have decided to not sweat this little stuff. I consider my epilepsy a little thing. When compared to other things that I could have, situations going on in the world, all that type of stuff, I pick my seizures. After all, I am special! They picked ME!

 

[Beanogirl]

Thank you for responding. I hope one day to have your attitude! Right now all I feel like doing is sitting around, waiting and being scared. I know my anxiety and depression is taking over. Once I have some answers and get on the path to fixing this hopefully I can see the light at the end of the tunnel.

 

[PragueClaret]

I try not to let it rule my life , but that is easier said than done.

That said, my seizures tend to come in groups. I had my first seizure at 17 (am now 39), and for the next four or five years was having at least one a week.

Then from the age of 22 to 32 had about one a year, then five years with nothing, then the last two years with at least 3 tonic clonic seizures a week.

There are times when I dwell on them and worry about what would happen if I had a seizure in a shop, while crossing the road etc, and times when I am more or less carefree.

Obviously, I would prefer to have never even heard of epilepsy, never mind been "blessed" with it, but that's the way things are, and I have to accept it, however difficult that acceptance may be.

 

[Crash]

Yeah i think you definetly have to look at the humerous side of it,if you can do that then thats half your battle won,i just tell people im not wired up quite right.I know its easy to worry 24/7,but once you get your diagnosis and your meds sorted out it will be a whole diffrent ball game for you,it will be like a saftey net.
Ive had seizures in town,work,even a bloody funeral! Talk about stealing the show,as long as you can get back,up,brush yourself down and carry on then you have cracked it,which im sure you will,good luck,Beanogirl

 

[Cint]

Right now all I feel like doing is sitting around, waiting and being scared. I know my anxiety and depression is taking over. Once I have some answers and get on the path to fixing this hopefully I can see the light at the end of the tunnel.

Sounds like your more scared of the unknown, waiting for something to happen. Once you get a diagnosis from the dr. and some kind of treatment, then I think you'll be more at ease. I certainly would be if mine were only simple partial seizures.

When I started having seizures I was 23 years old, just married and they started as CP and progressed to generalized tonic/clonic. I had a career in the airlines and my husband (now ex) was a pilot. So I got to the point where I couldn't drive, work, etc. and we eventually had two children who witnessed many seizures over the years. They learned what to do when they saw "mommy" having a bad seizure. I was having 4-5 CP's a day and 1-2 TC's a month. My kids learned when to call 911, as difficult as it was, when their dad was out of town. We had no relatives living close by.

I've struggled with epilepsy now for 30 years, tried many meds, surgery and still have an occasional seizure, so I am grateful to be alive.

Hang in there! Don't let simple partial seizures rule your life.

 

[davidmc]

I'm new to all of this. Still waiting on an official diagnosis but they are thinking simple partial seizures. I've never lost consciousness but they said seizures can change and I may have one in the future. I'm not allowed to drive which is very hard with 2 small children and one on the way. I'm stressed about getting to doctor appointments. I'm nervous all day home alone with my kids. We have a brand new swimming pool & I don't want to take them swimming alone b/c of the fear of having a seizure. My kids are young so they don't understand what is going on. I'm finding myself depressed and anxious all the time. I know it could be much worse but I'm feeling sorry for myself. I feel like I have a ticking time bomb in my head & I'm just waiting for it to go off. How do you deal? How did you get your life back to normal after finding out? How is your life different now?



Thank you for reading.

I have partial seizures, though not diagnosed, had to go through the headache route to get medication for the siezures (I do actually get the headaches though, so wasn't exactly a lie, just the headaches weren't the reason I wanted them for).

I like swimming and have had partial seizures whilst swimming, been ok though, but on those days my swimming has been badly affected to the point where it was pointless me going swimming as I couldn't do anything.

I have waited 12 years for a diagnosis, so I would say get someone to record you having a seizure if you can, as when I did this, my GP finally realised I wasn't putting them on (my sister had a go at him for that sssumption), still waiting but the Topamax is helping, feel like I've got my life back.

 

[valeriedl]

You just can't sit around and worry about what MIGHT happen when you are alone. If I did that I'd be laying in bed all day long until my husband came home from work so that I'd feel it would be ok to get out of bed.

I was recently talking to a friend telling her about one of the seizures that I'd recently had and she couldn't understand why I wasn't scared that I'd do something and hurt myself majorly because I don't know when the seizue is coming on and I don't know that I'm having it.

Luckily I have family that lives close by that can usually get me places when I need to get there, or I'll try to schedule my dr appts around my husband's schedule.

I don't know exactally how old your kids are, but could all of you go to some sort of counsler and have a discussion about what's going on. I don't know if you could get something like this done, but could you possibly get someone dressed up like one of their favorite cartoon charactors or something like that to talk about things. Have them tell the kids why they can't go swimming or if something would happen what to do.

Alot of times if kids hear something from a 'fun' person then they are more apt to actually listen to it and understand it better.

I told her I just watch what I do when I'm home alone. I'll only cook food in the microwave, and really don't do anything that could cause major harm or damage if I were to have a seizure while I'm doing it.