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i am getting bored and i have no ideas of what to do with the day or my life.

all i do is lay in bed, lay on the coucah and watch tv, and write to you guys/ gals laying in my bed, take baths, talk and text on the phone laying in bed, stare at the walls and ceilings laying in bed, stare at my turtles and crawfish while laying in bed, and that is about it. that has been my day for a while. even when i go to DC i just lay in bed, staring or watching tv. pretty much just laying around is my life if you couldn't tell. so how do you all entertain yourselves so you don't become depressed? i think i may be leaning towards that some days. i know i have given up a lot of hope. it just hurts so bad to even stand up and i am losing weight and i am just losing. i am just a big loser B) i don't have any friends here and i can't just got find any. i just have my parents that are taking care of me now but they really aren't around much anyway because of work and their activities. occasionally i get to go to the grocery store or wal-mart but i am really wiped out if i do, so in a way i don't even want to go except to get a change of scenery. i used to be so positive about everything but it is like i did a 180 somewhere along the way.

thank you for letting me cry you a river as i am sure a lot of you may be in the same boat. and thank you for any replies or suggestions.

dionna B)

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Dionna,

You have lots of friends even though they may not be able to visit you personally! You have us :)

It certainly is understandable about feeling the way you do. Who would'nt when they are forced to spend time lying down, or sitting, giving up activities and things they enjoyed. Knowing do one thing can set you back for a few days. That would be enough to depress someone who does not have any health issues, just hearing about a day in the life.

How about a hobby? Knitting, painting,(all things I can't do B) ), are you artsy/craftsy type ? Anything you really like to do and possibly could somehow still continue to do it while being stuck at home? Perhaps online work, or phone work. There is a website that has leads on at home work and is a pretty reputable website. If interested let me know and I will pm you with it. I've started to look for work at home. Right now I can work outside but not without problems. I go for 2hrs and have trouble standing for that long without heart issues becoming worse. At least sitting I can keep it to a somewhat normal level.

Anyway, remember we are friends even if it is cyberspace friends. Where do you live, in D.C? I have family that lives in Alexandria.

You will get that positive feel back, I know it. B)

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thank you very much! i live in South Carolina and i go to DC for appointments. that is where i was last stationed at, well actually bethesda at the NNMC. i know exactly where alexandria is. i did live there for 10 months though. i would love to know the website you are talking about. and again thank you very much!

dionna B)

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Hi,

I am fortunate to be able to get out of the hours for a few hours a day..I still get depressed though since I can't do as much as I could before I got sick. When I am stuck in bed for a few days/weeks I usually read or do some jigsaw puzzles. Obviously watch some movies....Now what I do is rent from Netflix (there are a bunch of movie rental by mail options through NExtflix, blockbuster, etc.) is order something like Lost, or Prison Break, since those are shows that are currently on tv......

Wish I had some more ideas..I do paint sometimes, but usually it is too "hard" for me to clean up after it!

Jacquie

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Hi Dionna,

I have found that activities that include water can be done without feeling too awful. Swimming is something I can do. But don't have a pool so it's not an everyday thing.

I like to read, and play on the computer too. Maybe just sitting outside is enough out of the house time for you not to feel as though you are going crazy.B)

Take care,

Amber

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I'm a fan of online movie rentals. They let you avoid the uncomfortable and exhausting process of browsing the shelves at the video store.

In the same vein, I use the library web site to request audio books. I can have them delivered to the nearest branch, and if necessary ask a friend to pick them up. I'm actually "reading" some things that are more ambitious than what I used to read in print, so at least I feel like becoming more cultured.

The radio is one of my best friends. I particularly like the long format programs like Fresh Air or This American Life on public radio. They take me out of myself better than the typical news or music programs. They have archives available online. I am more in touch with current events than I ever was before I got sick.

And sometimes, I just need to feel sorry for myself for a while.

Good luck.

Spike

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Hi Dionna,

It's pretty awful when we feel so limited, isn't it? The key thing to remember is that you are still you as a person- your mind is still perfectly lucid- it's just the packaging (i.e- your body!) which is a bit out of sorts.

It's important to keep moving and try and spend some time each day up and about. It's a killer I know- I had times last summer when I was bedridden pretty much all the time, but I used to make absolutely sure that I went out at least once a day- even if it was just to walmart with my folks in my wheelchair. When things get absolutely horrific, I will let myself have maybe 2 days in bed max to recover, and then I MUST get upright for at least some of the time, otherwise my tachycardia gets worse when I stand, and I get weaker from lying down so much.

There must be on-line courses you can do- is there any way you could, like lthomas251 says, take up a language? What about something creative? When I was at my absolute worst last year, I joined a group near where I lived for young people with physical disabilities- my mum used to take me in my wheelchair and it was a chance to just talk to people who knew what it was like to not be able to do stuff- a lot of the people had ataxia, ms, that type of thing- but they really humbled and inspired me. It stopped me feeling quite so sorry for myself, and made me appreciate things a lot more.

If you've been on the board for a while, you'll know I'm a full time postgrad, and that I had a real rollercoaster ride last year- I never knew whether I was coming or going because I would feel so ecstatic about the opportunities, but then so gutted about the obstacles in the way that stopped me from making the best use of those opportunities. It rendered me the illest I've EVER been- but the experience was definitely worth it because I have a real sense of accomplishment now I know I survived the year. Everyone told me to drop out at different points- my doctors, my tutors, even my own parents- but I would NOT let go- even when I felt truly horrendous. And it's boosted my confidence quite a bit. I suppose the reason I'm telling you this is to give you hope- there were severeal times in Oxford when I had to be wheeled to tutorials and lie down on the floor in the middle of the room to make presentations or keep form losing consciousness, but I did it.

The thing this condition steals the most is confidence- and if you can get that back, and believe that you can do more stuff, and get active and mobile I tihnk your life will be completely different and you'll feel so much more positive. There is hope!

Why not sit down, and just write down all the things you can think of that you like- what is/was your favourite subject in school? Whatever it was, start reading stuff about it- online/from a library (could your folks get stuff for you?) and then move from there- keeping your mind going is also so important. I find that if my mind's ok, the body follows!

Best of luck, and keep us posted on how you are doing. From young potsy to another!

P x x :)

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persephone,

thank you. that was very inspiring. i stayed at the hospital with injured guys from iraq so i was around a lot of my disabled comrades. being there made me feel a lot better. i am thinking about doing the studies and the classes but i haven't decided if that would be a good idea for me at the present time. the language idea... i am trying to learn spanish but i am not getting far at all. i have a horrible accent.

thank you all very much.

dionna :)

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Hey Dionna, no worries. Horrible accent? You'll have to find some hot latino men to teach you how to do it better :rolleyes: ! It's a tough job, but somebody's got to do it! Have you thought about something less challenging than a language to begin with? I tried to take up Old English (Anglo Saxon) refresher classes last year and it was really hard to remember stuff. What about something like a drama class, or art? Art is so therapeutic. Is there a musical instrument you could try?

Another class which I would like to join is Pilates. I got given physiotherapy (PT) in hospital this summer by a pilates expert and she was brilliant. I joined a small class in Oxford but the lady running it didn't think I had enough stamina to keep going :( But that's ok- I'll find a class for people at my level (eventually!) Whoever it was that said swimming too, that's a really good idea.

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This will make me sound very sad ..............I'm a Harry Potter lunatic, I've all the books, Dvds I made a full size 'unicorn horn' white and all carved and glittering .

I have a remember-all ball ( made again) the Philosophers stone ( sent to me by an electric fire manufacturing company )!

Harry and Hermione's wands, a mystic crystal ball, a full size ( not real ) Hegwig owl and a small Buck-beak , frogs, rats a glass with half a rat on it, which I made again. ( head and two feet at front , tail and back feet at back )

I have loads of books on Wizards, fairies , magic...........when I get a bad day and have to spend 24 /7 in bed sometimes for a week or more , I do count myself lucky , but on bad days ...........I ............have .................a............ and at this point my family groan ................................

:) ' Harry Potter day' :rolleyes:

I can repeat the spells and say the film/books word for word, never grow tired of the films running over and over again, and I keep all the local children in the village enthralled by my ability to speak Wizard :P and also raise money for a children's hospice doing this as well .

I find having one thing that you really love to read, see, sing to or study something you adore doing how ever strange or bizarre takes you out of yourself for a while. mind you I'm writing my second book as well in between Harry sessions.

Willows...................a good fairy.......with troll feet again !!!!!

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I do this, and watch movies, but I can't crochet or stuff anymore, as it makes me really dizzy.

I do really like puzzle books, I like to think that it keeps this foggy little brain working a bit. I do crosswords, circle words, those bugger puzzle books that are impossible and now soduko or however it's spelled. they can keep me busy for quite some time, and are easy to just put down when I'm tired.

I pretend they will prevent full mush brain syndrome....puzzledmorgan

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i really like the crochet idea. perhaps i can get my brother to teach me. he was doing that for a while. he is a big artist and very crafty. i also like the puzzles idea. for those of you that do the puzzles, do you have as much of the brain fog, memory loss, and cognitive impairment?

dizzy dame,

how would i go about starting a blog? (i don't know much about computers at all--- i am still learning on this forum how to do everything) i looked at your blog some time ago, very nice. thank you for your help.

dionna :)

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As mentioned above, crafts and learning something new are good.

If you are already good at something, teaching is good. It doesn't have to be in person. You can participate in an established site, or start your own.

Write a book, column, comic strip, etc.

If there is any charity or cause that you are interested in, there are ways to participate from home. This site is one of them.

If you have any political interests, you can participate in the national discussion. Write your representatives, company heads, organizations.

It gets frustrating when there's so much you can't do, but there are plenty of ways to be productive.

www.blogger.com is also an easy way to start a blog.

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Hi- I have a blog. Have a look at www.livejournal.com

It tells you all the basics.

My username is oxoniana if you want to add me :rolleyes:

have fun! I also set up a group for POTS/NCS/fainty people called "fainters_unite" which you can join if you set up a blog! :)

Yay! I was about to ask if there were any groups on LJ. :P

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0406.gif

Everyday is a roller coaster ride. Buckle up and hang on!

Hi Dionna,

First off, (((Hugs))).

This is a hard thing to deal with. I can only say, take each day one at a time.

I don't make plans, except Doctors visits. When we have company, I excuse myself and nap. This seems to give me a little more time with people.

I collect Chatty Cathy Dolls. I have 29 as of today. I buy them off ebay and wash their hair, bathe them and put pretty dresses on them. It's fun for me because I had one as a child. My husband and 3 sons get a kick out of it.

Another great thing I do is watch the birds, squirls and bunnies. My wonderful husband and sons set up a nice bird area outside my window. there are 2 feeders, 3 houses and a birdbath. I sit for hours watching mother nature give me a show. I love watching them! Some days I sit and watch for hours. I have a bird book and write down the observations (when I'm doing ok) and I also name the critters. I love it!

I play board games to help keep my mind from getting mushy. Also, I do word jumbles (not good at cross word) and read magazines or a book is always there for me. I tried sewing but I wiped out too fast. I have RA so knitting, etc. is no good for me. Drawing is fun even though I can't draw! Have you ever thought of writing Children's books? My husband collects dvds so I always have a movie to watch.

I don't get out much but I do make it to the end of my driveway to get my mail. My husband takes me to breakfast, the mall or some store I like.He pushing me in a wheel chair. Most of the time I can not use an electric cart because I lack energy and it wipes me out.

I must say, I do things in small doses and know that it will take me days to recover. This is how I look at it. I can't live in a bubble. I think like a child and take things one day at a time.

One other thing, Don't try to make a "to do" list for the day. Make them for a week or a month. It's not as overwhelming that way. :)

We are all in this together,

Lori

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Hey Dionna,

If you go to this address:

http://www.blogger.com/start

There's a button that says something like "start your own blog". If you click that, the program will guide you through all the steps. It's simple and really pain-free. Live Journal is also a good idea, a blog is just slighly different from a live journal page, but both are good.

Feel free to email or PM me if you have any more questions. I'd be happy to help if I can!

-Lauren

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