There's a new Mouse in the House. :D

[Mouse1963]

Hi, My friends all call me Mouse.

Late last year I found out that I have had Epilepsy all my life.

Imagine finding that out at the tender age of 52!!

The fun didn't stop there. I had been driving since I was 16 and was forced to give up my drivers. There went my independence right out the driver's side window! Needless to say I was more than just a little rude with my neurologist.

At least I had the answer to all the memory lapses and blasted headaches that came every time I laughed to much or the weather changed or people got me upset. Oh and the "fun" of not knowing why I was having a conversation with a person I didn't remember meeting.

Last month I gave up my job as caretaker. The stress was just to great. My ex-husband is wrapping up the last few weeks there while I get a place ready for myself in the country. Yeah, I know it's isolation at it's finest, but it's almost stress free.....well, as stress free as a person can get when they can't drive anymore & everyone else is telling them what to do with their lives.

I enjoyed the job, that is as long as I was alone & the complaints weren't to many at once. The pay was....okay, I guess. Free large 1 bedroom apartment & $500 a month to pay the bills with. But I was in the city & could get to all those confounded doctor appointments by just "hoping a bus". Now back in the country on 3 acres of land & no way to get around, unless I walk about 25.5 - 27.5 kms one way.

One this this last year has taught me is that I really prefer to live alone, but now I need someone to drive me back to the city ( a 2 hour drive one way) and be here "just in case."

Is it just me or is it really this hard to adjust to life with this blasted disease?

Am I the only one living in the country to help cope with high stress levels?

Am I the only one who can't take Anti Epilepsy medication because of other health issues & risks, like say a stroke or heart attack?

I feel alone a lot of the time. Like a raving lunatic & side show freak. Yeah, that's pretty close to how I have felt lately.

You know, all my life I knew I was kinda different, but EPILEPSY????? That knocked the wind out of my sails all the way into the cosmos.

Oh yeah, I'm new here. :e:

 

[Frink]

Hi Mouse1963,
Welcome to CWE.

 

[valeriedl]

I had my first seizure 13 year ago when I was 27. I hated not being able to drive any more. I live out in the country too, not quite as far out as you though, only about 5 miles away from the grocery store. Luckily I have family who lives near by but it's sitll hard to get around because I have to work around their schedule, I can't just hop in the car and go places when I want to.

Do you have a pet? That could help with feeling alone. I have two cats that follow me every were and bug me like crazy, which I actually like.

Nice to meet you!

 

[Porkette]

Hi Mouse,

Welcome to CWE! I had my first seizure when I was 10 yrs. old and I'm 54 now. I've never been able to drive in my life and I live out in the country. It was hard for me to adjust when I first got epilepsy but as time went by I told myself I couldn't let the epilepsy get the best of me. I take seizure meds but they don't work that good because a DNA test showed that I am drug resistant to all seizure meds out on the market now.
I do have my husband to take my back and forth to work but if he's not around I can take the local bus or take the Gadabout which is a service where a company will come and pick up people who have disabilities or are elder and they take them places at a low fee. You may want to look into something like this in your area.
My family turned away from me after I got epilepsy so I've been alone most of my life but I take a look at all the famous people in the world that have had or had epilepsy and I saw how it didn't stop them so why should it stop anyone else. Elton John, retired professional football player Alan Faneca, Edgar Allen Poe, Einstein, Agatha Christy and many more people. I've found writing and listening to music a big help to get rid of the stress and the feeling I have within. I wish you the best of luck and May God Bless You!

Sue

 

[Mouse1963]

Thanks for the warm welcome.

Yes, I have a cat, but she is now in her 17th year alive & 16th year with me.
Mitza is a wonderful comfort & even wakes me up at night if I'm having a seizure. She even hisses at anyone trying to bring any kind of stress into my life. It's kinda funny actually.

I was thinking about getting a quad to get around with, I can take it in the ditch & the back roads, or a skidoo for in the winter time. Just ideas so far, nothing solid yet.

Having just left my job I'm still waiting for my record of employment so I can apply for Employment Insurance. But when that runs out I need to have a source of income to pay my way. I'm thinking about doing some creative writing and sewing.

Yes, Yes, I sew. I would rather spend my life wrapped up in organza & head pins then waiting tables. Sewing, although my first passion, is also a source of stress when I try to sew for others. It's one thing to have a stack of baby blankets ready to sell or give away, but sewing gowns for others can be a touch stressful when someone is very particular about what they want.

Lots of people have told me that I need to tell my story in written form.
This Mouse has, as a passenger for all but 2, survived over 25 car accidents, including the one 3 months before I was born. I made some very bad choices between the ages of 19 & 30.

Writing my story could take the rest of my life with the way I can't keep a thought straight long enough to write it down some days. I remember I was journaling one day & part way through I had a focal seizure and the next thing I knew I was writing a story. People tell me they have never met anyone like me that can hold 4 or 5 conversations all at the same time with all different people. Some people get confused when I start talking to them about stuff that happened last week as if it is just happening now. it's kinda weird, but "That's the Mouse for ya." as Mike would say. Mike is an online friend who I like to game with sometimes. He can be very funny when he wants to be.

I have a friend who's going to help me with my short stories for proof reading, publishing & selling purposes.

I'm also kind of tossing around the idea of raising Alpachas. They are like a lama only smaller & bread for colder climates. I can sell the wool twice a year to people who do spinning.

Thanks again to everyone for the warm welcomes.

About the getting around thing, winter is almost upon us here in the Interlake region of Manitoba Canada so I don't think i'll worry about it unless I get a really bad case of "cabin Fever." (Think Muppet Treasure Island here. LOL)

Have a great day everyone. <3 :e:

 

[acshuman]

! ! ! ! Welcome to CWE ! ! ! !

Mouse,
If you just received your diagnosis a year ago you will find that you will learn how to deal with NOT having the things that you lost! Time and patience are two of the best friends that E has. You can't expect to suddenly be able to deal with your new life overnight. You have to realize that it is going to take time and you will have to have patience during that time.
It has been over 50 years sice I was diagnosed w/E! I have found out many things about my life and existence that I would have never known about if I had the kind of life that having a DL can provide. Some people try to do too much and never see what really makes up the important parts of their lives. When you have more time to look at things you will see that there are many parts of a person's life that are just taken for granted and NOT fully understood!
Give yourself some time and you will see that your life isn't as bad as you think it is! :twocents:
Epilepsy isn't a disease, it is a 'condition'!

 

[valeriedl]

You might want to double think getting the quad. If you were to have a seizure on one things wouldn't be good. You might wreck and die.

I had one of my cats for about 15 years, they thought he might have been around three when I got him at the shelter. It was horrible when I had to put him down. He pretty much lived on me, any time I sat or laid down or get in bed he'd have to get on me. He knew when I was having a seizure and would get on me and not let me move until I was out of it. One of my friends gave me a cat a few months after I put him down. She's only about a year old but is starting to be a lap cat which is very nice. My other cat isn't a lap cat but he will get in bed and sleep with me on his pillow.

All the other things you mentioned do sound like good ideas. It's something to keep you busy.

 

[Mouse1963]

The quad idea is just that, an idea. I know there are risks with the focal seizures and driving. I know for a fact that the last 2 car accidents I was in, I was in a seizure (I could see what was happening but I wasn't there.). I felt horrible and put aside my dl for almost 8 years before I took the tests again. Of course, had I known I had E I wouldn't have bothered.

Yeah, cats seem to have a "knowing" about things that can harm "their human". LOL
My ex-husband's cat Hope, she's a real cup of tea. she'll come & talk to me to be held if she sees me staring blankly at the computer screen too long. By too long I mean more than 2 or 3 seconds. If I don't respond she starts to swat at me like I'm some kind of fly or something. It's funny.

About being patient, I think i've spent my whole life just "waiting" for who knows what, just waiting. so patience may not be the issue, it's staying busy so I don't fall into self pity that's the big issue. The depression gets too real sometimes. Then the sun comes out & I'm happy again. Mom use to call me her "Sunshine Girl." LOL I was always happy in the sun & cried too much when the weather was grey.

Time is my friend. That is one thing I have learned. I have been watching a lot of netflix lately & there are some good inspirational & inspiring movies & programs on there. Sometimes it's a time killer, other times it's a very good learning experience and a source of strength & inspiration. I get lots of ideas from there.

I'm also one of "those" people who play Minecraft & have about 4 or 5 online buddies I game with. I have a private server for playing with a few friends but it's nothing big. I did build a memorial for my sister & my son on the server I played on last year, I might post a picture of it one day. I'll have to check the rules on that first though. LOL
I like playing minecraft because I can build stuff & allow my creative juices to run wild.

So just going into my second year of knowing anything about this "E", what else can I expect? How often do I have to go back for testing? What about living completely alone out here in the country, can that even be a thing? Will I always have to have someone around me now? That would really cramp a few things I've just gained back. What about the money? If I can't work because of seizures, where will money come from to pay my bills? It's not a disability, right? Would I just be better off learning to support myself on the Sewing & writing I like to do?

I'm sorry, I just have so many questions & so few answers.
Ooopps, just gave myself away again with that whole Canadian thing eh? LOL

Thanks so much for making me feel welcome.

 

[Nakamova]

Hey Mouse, welcome to CWE!

So just going into my second year of knowing anything about this "E", what else can I expect? How often do I have to go back for testing? What about living completely alone out here in the country, can that even be a thing? Will I always have to have someone around me now? That would really cramp a few things I've just gained back. What about the money? If I can't work because of seizures, where will money come from to pay my bills? It's not a disability, right? Would I just be better off learning to support myself on the Sewing & writing I like to do?

It depends on how frequent your seizures are, what form they take, whether they are escalating, etc. Are ALL anti-seizure meds off the table, or are there some you might try? Have you looked at alternative treatment approaches such as diet? Here's a good CWE link to check out: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ If your diagnosis is certain, then you don't necessarily need to go back for testing unless something changes in your seizures or in your treatment protocol (whatever it may be). At this point I only see my neuro to get my rX filled.

If you have a good sense of how your seizures play out, you can make the call about how much help you want in dealing with them. I live alone (and I swim alone too), but my seizures are currently controlled by meds. If you worry about what might happen if you have a seizure while alone, then there are different steps you can take, everything from wearing a medalert bracelet and getting to know your local EMTs to asking neighbors to check in on you on a regular basis, to having a live-in companion. It's your call, based on your comfort level, needs and resources.

The money issue can be tricky (even without epilepsy in the picture!). You can apply for disability with epilepsy, but it's not a given that you will qualify. See http://www.coping-with-epilepsy.com/forums/f23/seizure-disorder-disability-11335/ and http://www.disability-benefits-help.org/disabling-conditions/epilepsy-and-social-security-disability

I was already self-employed when my seizures hit (at age 35), so that made things a little easier for me. It can't hurt to explore what your options are for work that doesn't require you to travel by car.

Don't worry about asking a lot of questions. Getting informed is a big part of coping with epilepsy.

 

[seagull]

Hello...explain the medication and stroke why.Give me bit of fright i on the Meds and had infarcts on brain.
Have you thought about electric push bike.i had get rid of my old push bike as my reflex and eyesight is not good enough but I miss it gave me so much freedom.i could never afford electric bike and you don't need licence

 

[Mouse1963]

seagull;
there's not an easy way to explain this without giving out to much of my personal medical history.

I have too many things that make the medication not work in my body. A lot of medication that "normal people" can use, I can't. it's like my body attacks the medicine & kills it before it has a chance to work. I'm not sure why. My mom's body is the same way. That leads me to conclude genetics.

 

[Mouse1963]

Most of the time I know when the seizures will start.
I use to get that "aura" feeling while driving & just pull over to the side of the road or pull in to the first gas station or restaurant I saw. I'd wait for it to pass & if it took more than 20 minutes, I got a room for the night.

I can tell when I am going to have one, every time. sometimes I can get control of the situation to get things to stop long enough for the aura to pass & seizure avoided, other times I'm not so lucky.

Yes, it's all medications. The doctor took every thing about my medical history & all the reactions I have had & all that other medical junk mixed it in a blender & came up with "this is the only option I can give you." I gave his "option" a try but to no avail. I gave it a solid 3-4 months. Then it happened. my best friend hadn't left my side for over 48 hours because I was convulsing so bad he couldn't even make a phone call. He gave me a herbal cookie a friend had given me for "emergencies." Within 15 minutes of having said cookie the seizures stopped completely. Needless to say I went off those pills the way I knew I was suppose to with any other medication, you ween off. I haven't had any more convulsions.

I'm looking ahead to see what comes next. Things can only get better from here. For me, knowing is 95% of the battle.

 

[seagull]

You mean puff cake unfortunatly that clash with my Meds and the worse e just awful.There is herbal oil that has very small bit of herb in oil they say is good.
I thinks you should keep mob phone with you at all times.e med for many is trial and error.what worry me is your friend had stay because of sz so maybe time ask doc for blood work ups eeg MRI if you well controlled on what you take then fair play.see more than one doc get see nuro who specialised in e.