What do you do for fun around the house?

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dawn9100

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Hi everyone,

From my reading, there are loads of people on here that don’t drive? I’m also divorced, but I do have my son here to help out when I need it, and get me to appointments and stuff. I’ve started getting groceries delivered, and joined Amazon Prime to get any non-grocery items delivered...

But at the moment I can’t really leave the house alone. Last time I went for a short walk alone I had a tonic-clonic right on my face. Broke my jaw in 3 places, my front teeth, and my nose.

I work from home (thankfully!!) but it doesn’t invite much social interaction...

and my ex pretty much got our friends in the divorce...

But with all that said, I sure am tired of sitting here feeling sorry for myself. And really want to find somethings to start getting excited about and involved in!

Another question- how careful are you? What precautions do you take, and when do you say “whatever! I might get hurt, but I gotta live!”

There are days that I feel like “F- it!! If I get hurt I get hurt, I’m walking to the store!” But my son and the rest of my family sure don’t feel this way... they would prefer it if I would wear a full face motorcycle helmet if I want to go for a walk...(picture that 🤣)

I’d love to hear how others deal with these situations.

Thanks all!!


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I use Uber/Lyft to get around, and on the weekend I get rides from family for some things.

I live with my mom currently because I quit my full time job because of depression. I'm currently looking for a new job. Not sure what's going to happen... Looking for something new and that will fit my career a bit better than my previous jobs. I might have to move away.

For fun, I enjoy music. I've been making Spotify playlists and trying to find new music. I've been slowly building a collection of vinyl. Maybe I'll DJ with it one day, who knows. For now I enjoy it for myself.

I also want to build a collection of Laserdisc movies. I just think these old movies are pretty neat. It's a cool niche. If you don't know what laserdisc is, look it up.

And... I occasionally play video games with my friend over the internet back in Austin. We used to play Diablo 3, but lately we've been playing Portal 2 co-op. Portal 2 is awesome in multiplayer mode. If you've never played Portal you should. It's a puzzle game. You can buy it really cheap and it should run on most computers (it runs on this low spec laptop just fine). I highly recommend these games. There is Portal and Portal 2 which followed. Portal 2 added multiplayer. The multiplayer is fantastic so find a friend and have at it, you will have a blast. It is a very challenging game.

Otherwise, ... I don't know. I haven't figured out what to do with my time. Ha!
 
I don't have very much social interaction either. It seems like all my friends but one left me after I was diagnosed with epilepsy. They don't live very close to me any more and I think it just turned into too much of a hassle for them to come get me and go out.

My husband's not that big on going out, even if it's for dinner. We usually get our food to go and take it home to eat. When I do go out, with it's family or friends, I try to make the most of it.

I like to read, draw, crochet, do word puzzles and get on the internet of course!

This might sound stupid but one thing that's fun to do at times is clean the house, seriously clean the house. I have to do it when my husband's not home though because he more of a 'tell me how to do it' and not a 'help me do it' person. I crank up the music, sing and dance, (as much as you can dance while you're dusting and scrubbing) and have a good go at it. If you have pets you can't believe what you find under the furniture, things that you might have been looking forever for! It's so nice to see a clean smelling good house! I'll only do one room at a time though, I don't try to clean the whole house in one day.

I know what you mean about the motor cycle helmet thing, I think I'd be wrapped in bubble wrap too. When my husband comes home and see's that I've moved the furniture, or something else heavy, or got on the step stool (which is only 2 steps high) or stand on a chair to clean something high he's furious! It's not like I climbed 10 feet up a ladder! This is another reason that I have to clean when he's not home because I know if I don't do it then it's not going to get done because he's not going to. I also have other things that I can use to clean things high so I don't have to stand on something to do it.

Basically if I don't feel safe doing something if I had a seizure while I was doing it, not just when I'm cleaning, then I don't do it. There are those times though when I'm cleaning that I probably shouldn't be doing I say to myself "Well it's got to get done and I know he's not going to do it"!
 
Hi Dawn,

I've had E for 40+ years and of those years I was married for 26. I used to have TC seizures before I had surgery and now the VNS. I still have some CP seizures, so I don't drive, although I live by myself. Like Res said, I use Uber a lot if I need to go out to my doctors, but I live very close to the public transportation Light Rail system, so I can go downtown anytime.I do that often, by myself. I stopped being afraid long ago because I did have several TC seizures in public and 911 was called. So now I wear the MedicAlert bracelet and if something happens, they know what to do.
I just had my bike converted to an bike, so now I go out and do a lot of bike riding and hiking. I also go to the library a lot. And I'm a member of a Writer'sForum that a former member of CWE invited me to. I'm also learning to quilt when the weather is bad.

I'm sure you'll find something to keep yourself busy.
 
Hi Dawn,

I've had E for 46 yrs. and I've been married for 31 yrs. but I have found writing poetry or short stories one thing I like to do. I also get into history and I've worked on my family geneology which takes time.
My husband usually takes me places but I can also catch the local bus or I can use Gadabout which is a service that will take me where I want to go and bring me home again but I have to make plans ahead of time.
Another thing I like to do is go for walks in the good weather, visit neighbors, and I love flowers so I try to keep busy with flowers and peony bushes in my yard.
One thing you may want to do which is fun and keeps me busy is going on line and doing brain teasers. They are questions that are so simple that they are hard. Give it a try just type in "brain teasers' while on line.
I feel the same way you do when it comes to the helmet. My parents were overprotective of me yrs. ago and it drove me crazy. I feel just because a person has E. that doesn't mean it can stop that person from living a normal everyday life.
Now tell me can 12 +12 =12 and all you do is add. Good Luck!
Wishing you the best of luck and May God Bless You!

Sue
 
I've had epilepsy all my life. I have been married 20 years. My husband takes me where I need to go. I am also lucky that my mom lives 10 miles from me, & she comes over at least once a week because she knows that I'm stuck at home all the time.
On Tuesdays the theater is $5 for movies all day so we go sometimes, or we'll just walk around the mall.
When I'm alone, I enjoy doing puzzles--jigsaw & word, and listening to country music. I also watch TV, or at least keep it on a lot of the time as background noise when I'm totally alone in the house.
 
I've had epilepsy my whole life, but before I knew, I was too afraid to drive, and I depended on my family, for rides to and from work, and if I wanted to go anywhere I would ask to get a ride from someone, I would pay them back by filling up their gas tanks frequently for them, with no hesitation. Now I really only leave my house alone to take my dog on a short 5 min walk, sometime's a slight bit longer when my Twin agree's to go with me.

Really the only social interaction I have is when I'm on this website, otherwise you could say that I interact the most with an Uncle when he's come to visit, we talk about how my Father should fix something better than what he did, how he needs to buy a classic car for my Uncle and to fix up for him. Yes, this is all in the normal family joking we all do.

When I'm at home, I read classic books, draw and color too. But I like to knit the most, I frequently find fun patterns on 1 of my favorite knitting website's, but to go to the store, I prefer to buy the supplies from a favorite store, it's difficult to get there since I depend on so many for rides and when I ask a family member I have to explain, what, when, where, and Why?, constantly, so I usually just download the pattern's and hope I'll remember to buy the supplies when I go shopping next. But I have a bit of yarn that I will unravel from old project's to use for something else, different blanket's that I will use the yarn to make a patchwork blanket or mitten's, and scarve's too when I have the need to do something to pass the time. Another pass time I have is making jewelry, necklace's, bracelet's, earring's too with crystals.
 
I like sewing & embroidery, but currently I don't have an area to work on these 2 interests of mine. I especially like quilting--possibly because I've always loved math. Other hobbies of mine are stamp & coin collecting. I began my stamp collection when I was 11, when most of my classmates were collecting stickers.
 
One of my favourite things is building lego sets, I use it as a means of stress relief because I can sit down for hours at a time and just focus on it and not things that are troubling me. My grandmother knows that something is bothering me when I stockpile on sets
 
Hi , I can relate. When I get the nerve to go for walks wouldn't you know it seizures. I hurt myself pretty bad too. My mom hates it when I leave by myself and I'm 40. As far as work goes I can't. I just do hobbies I always wanted to do. Lately been carving wood. I've cut myself a few times due to a seizure. I'd love to work from home doing some kind of assembly job or something. My son Jacob keeped me real busy , than I get a call 5 days before Christmas. Your son has been shot. He was killed 15 yrs old too, by his best friend. They got a hold of a gun on Snapchat. Horrible!! Now I am really bored. I'm trying to get myself back together. I still try to crave wood. I hope you find your nitch . My family is a big help. When they 1st started when I was 20 I wasn't afraid of them, now I am. God bless .
 
I play a fair bit of playstation and like watching anime and movies on netflix, sometimes i just stick Kerrang Radio on (rock/heavy metal music) and do some adult colouring books lol. It's so relaxing!

Luckily the town centre is only a ten minute bus ride away, and since i have a disabled bus pass i can just hop on and go for a wander, sometimes on my own. Go to the seafront, see the sea etc, or just go for a coffee :)
 
Sweetroll said:
Hi , I can relate. When I get the nerve to go for walks wouldn't you know it seizures. I hurt myself pretty bad too. My mom hates it when I leave by myself and I'm 40. As far as work goes I can't. I just do hobbies I always wanted to do. Lately been carving wood. I've cut myself a few times due to a seizure. I'd love to work from home doing some kind of assembly job or something. My son Jacob keeped me real busy , than I get a call 5 days before Christmas. Your son has been shot. He was killed 15 yrs old too, by his best friend. They got a hold of a gun on Snapchat. Horrible!! Now I am really bored. I'm trying to get myself back together. I still try to crave wood. I hope you find your nitch . My family is a big help. When they 1st started when I was 20 I wasn't afraid of them, now I am. God bless .
Click to expand...



Thank you Sweetroll!!

I’m so sorry to hear about your son! I’m sure that I would have given up altogether by now, if not for my son!! I’m so sorry you had to go through that.

I am still feeling stuck. I just decided to go lay on a floaty in the pool for a bit, when my son came to remind me “I don’t actually know CPR, I’m not sure what I’d do if you had a seizure and started to drown?!?”

My family are amazing, and I don’t want to worry them... but I think at some point you have to say “but I have to live!” Right?

To this point I don’t... I want to find a plan so that I don’t worry my family... but no luck so far...

We went to the Grand Canyon last year, I was taking pictures, and my son was right on it- “Mom, please don’t stand there!”


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Thanks. That's good you got good family support, if it wasn't for God and family I would of already given up. I guess I just have to stay strong.
My family are on me the same way so if I go for a walk my mom is worried to death. I kinda stopped doing anything on my own unless it's at home and even then I get it . Don't get me wrong I wouldn't trade my family for nothing. It also helps that my mom is here with me. Like you I just feel stuck! God bless you and stay strong.
 
Before I started having complex partial seizures I used to enjoy cooking a lot, too. I burned myself severely--2nd & 3rd degree--at least 4 times during CPs, so I no longer cook unless someone is with me.
The first time I burned myself was the scariest in a way. I had boiled eggs for breakfast, & was sitting on the sofa to eat them. The next thing I knew, there was an empty plate next to me, & I had huge blisters all over my hands and arms. My husband and son had been sleeping in our condo's bedroom--about 25 feet away the whole time!
 
Hi everyone,



But with all that said, I sure am tired of sitting here feeling sorry for myself. And really want to find somethings to start getting excited about and involved in!

Another question- how careful are you? What precautions do you take, and when do you say “whatever! I might get hurt, but I gotta live!”


I’d love to hear how others deal with these situations.

Thanks all!!


My wife also goes out sometimes, no precautions. She often is hurt and I must come home and try to fend off the medical team that wants to head to the hospital.
For precaustions too the head, I suggested a bike helmet but by a all around brim to attach looks reasonable.
We agree to have her notify of the walk and a couple of us can track her wherabouts.
Most often we get a walking partner usually me and walk in a park. I train the walkers on how best to catch and deflect her falls.
With all that said she has a point.... she walked with family this year was momentarily separated, started talking to a couple and then walked off a pier and fell a few feet onto large rocks. Ouch!
For fun she plays board games, brain building games, and, she gets craft projects that are challenging.
She feels best and excited the most about life when she is talking and meeting others, hearing their story and telling hers.
No support group for her, just picks up a conversation with anybody and it just goes from there.
We are looking into tricycle bikes with electric assist for trail riding. We are both in our 60's.
Grandpa Hill
 
I Live in town. And my full-time care-giver drives is around to my endless doctor appointments and we go to the library, food, etc. At home we. Stay around each other. Lately I've been so stressed that I've been somewhat fearful to be apart. This is/can be trigger. And all the ultra bright sun and spending lots of time in that sun. Triggers, too much exercise, especially in sun.
My doctor recommends I wear a helmet all the time. I already have brain injury. I'm nervous a little more. For example: now my girlfriend has to go out on her own for 1/2 to 1 hour. I can hang out at a bakery real close to where she will be. Or, and I will do this, get dropped off at library. I think, I have to trust this public place. In my, liberal, old hippy culture town someone will call 911. And I wear a medical emergency bracelet.
I have no warnings to my seizures. I have felt ok on some days too takes public bus. And I mean I avoid empty streets. I am careful about my steps, "would I be ok if I dropped into Tonic Clonic here. Stay out of dangerous spots.
 
I have no aura either but the gf has what we joke about as "hip attachment" because she doesn't like to let me get to fair or will wake up out of her sleep if she reaches our and I am not there. Partially because my tonic colonic stage is what court cases are made of
 
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