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~Naomi~

For The Mostly Homebound

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Just wondering what you do all day - how do you pass the time? Are you able to get out at all? If yes, what are you able to do? I'm normally pretty much stuck at home, but with winter here and unable to tolerate the cold at all, I'm really stuck IN and it's driving me a little nuts. I'd love to get out and go do something, but I take me and my dizziness with me and that's no fun - so I don't. It's frustrating to be the same person inside, to still have interests, but not be able to act on any of it. I have my children home in the afternoon and there's more to do then, but this doesn't fill my whole day. In warm weather, I can at least sit out back, plant a flower or something. The walls are closing in on me. So what do you do all day?

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Guest wishing&hoping

Good question. It's hard. It's also amazing how quickly the day can go by doing very little. I nap, do paperwork, make appointments, fight iwth insurance companies:), try to talk with friends, read, etc. Be glad you have kids coming home at the end of the day; I live alone and don't have any!! I've also been mainly homebound due to dizziness; get out occassionally to try to walk on good days. At least I'm not shopping :)

Hang in there!

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I so understand. I hate winter! And this year is the worst. I do not try to drive anymore, so anything outside my house, I have to rely on someone to take me. Which means I'm mostly home. One hobby I took up is beading, it's not too expensive, and I enjoy being able to give gifts to my friends. Not only does it give me something to do, but it give me something to feel good about.

I'm not much of a day time tv person, but I do read a lot. And on my good days, I love to experiment in the kitchen. I should own stock in the foodnet work. Ha

I also gave in about two years ago and got a wheelchair. That way friends and family more willing to take me places.

Hang in there, spring is around the corner.

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It's really hard. Ate you able to consistently do things? I always have to rest and can only do things for short period. I dream of a day I have endurance to do simple things like read :/

My first goal is exercise. Its split throughout the day because like I said, I don't have a lot of endurance. I usually do the exercise bike an I alternate days between light strength training and short walks. And I do a small amount of tilt training. My dr wants to get me to 10 mins but 3 1/2 is death.

There's the usual tv, movies, music, and podcasts but that gets boring after a while.

I learned both knitting and crocheting. That could be a great thing to learn there are TONS of resources online. If anyone's interested message me and I can point you in the right direction ;)

I have always loved to read and write. Those are go-to's for me and I long to be able to go more of it,.

I have these books that are half coloring book half sketchbook. They only have part of a pic and your fill in the rest.

Think of any type of hobby youd like to learn and go for it, you can learn almost anything for YouTube and google.

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That said my biggest obstacle is my body not feeling well. I'm torn between pushing through bc I'm not going to feel good anyways OR resting, pacing and feeling a little better but wanting to go insane,

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@ I hate bananas, off the subject but I love your quotes and your picture that comes up when you post! Made me smile!

I don't want to by any means compare my pregnancy bedrest to those of you with this illness but while on bedrest, I tried to put together a sort of schedule for myself and try to accomplish whatever I could. I had my hobbies. I learned to crochet and knit. Wish I would've kept that one up! There are so many cool things you can make and you can always give them away too.

When my daughter was at her worst, I tried also to keep her busy with games, movies, books and thank God she could go on her own computer and stay connected with her friends.

Can you get out at all and hang out with friends or family? I know that always lifted my daughter's spirits. My heart goes out to you and hopefully, it will be a early spring!

Brenda

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Cooking or baking when I'm up to it, have a blockbuster at home membership to watch movies, walk the dog in neighborhood when I can (if I'm really feeling good we go to the park or petsmart), TV, reading, lunch with a friend occasionally, a movie at the theater occasionally (but these last two I always make sure someone is picking me up and dropping me off so driving isn't a factor), really good days I visit and groom my horse (lately that's only about once a week and I have to push myself to do that). I am considering starting to sew horsey things like saddle pads, saddle covers, bridle bags, etc to see if I can make a little extra cash since that's something I can do when I feel well and in my own home.

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Naomi,

So sorry you are dealing with this. I know it can be so frustrating, I too, have had the "cabin fever" feeling. When I started out, I never went out, didn't drive, missed out on a lot of things. My first episode happened while driving and I was completely freaked out by it and gave me what one dr. called situational anxiety. I was almost an agoraphobe (sp?). Now over the last 3+ years, I'm slowly starting to get back into the things I used to do. I only drive when absolutely necessary and even then it is a huge deal for me. I try positive self talk to get me to where I'm going and once there I usually begin to calm down and can get done what I need to, but I am always looking forward to when I can get home. Home for me is my safe haven. I am a home body by nature, so it doen't bother me too much, but there are times when it does bother me greatly.

I homeschool my two teens, so my day is wrapped around them and schooling mostly with assorted chores thrown in if I'm feeling up to it. I have taken to blogging, although don't do it as consistantly as I would like. I would love to get back into exercising as I haven't for over 200+ days according to my Wii fit. I used to love to paint and scrapbook and do crafty things, but now I spend most of my time on the computer, doing schoolwork, planning for a poetry class I teach at a co-op, reading forums like these, blogging, etc. I do wish I would get out more (not driving mind you) just a walk around the block or something, but I just don't have the motivation nor the inclination.

I totally agree with the others, try to find something you enjoy doing or something new to learn. There are so many things on YouTube that can get you started.

Hoping spring comes early for you :)

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That said my biggest obstacle is my body not feeling well. I'm torn between pushing through bc I'm not going to feel good anyways OR resting, pacing and feeling a little better but wanting to go insane,

Yup, I can relate. I should really use the first half of the day to get some rest because I feel like I haven't had any in 9 years since my son was born. Problem is even though my body feels tired, this is when all the heart racing, adrenaline pumping madness is going on and I find it difficult to relax. It's sort of a false sense of energy. But in reality if I tried to tackle something which should be simple - like grocery shopping, half way through I want to sit on the floor. By the time my daughter gets home I'm wiped (from doing not very much) and that's when I want to crash and lie down, but I can't for long because she needs me and then my son comes home and he needs me and then I have to make dinner etc.

I like the craft idea - that would be engaging without requiring a lot of energy. I tried knitting a few years ago, but it took forever to make one little square and then I messed up somehow and it was looking like a mess, so I said forget it. I admire people who can do it! Maybe I can find something that doesn't require a lot of eye focus. If I didn't have my issues, I could get together with other stay at home mothers, but it's just too hard to pursue friendships like this. My daughter had a playdate here yesterday and the little boy wanted his mother to stay. While part of me enjoyed the interaction, it was hard to sit straight up for 2 hours having a conversation with her. It's hard for me to think and focus for that long.

Ugh, it's a push/pull - with my mind wanting to do things, but my body saying sorry, that ain't gonna happen, lady. Sorry I'll stop whining now. I know you all understand. I think the cold, grey winter days are just getting to me.

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Naomi,

I'm home most of the time, too, trying to figure out all of these crazy symptoms. As you mentioned, I could go out for briefly, but in the end it has to be something that I really want to do in order for it to be worth it.

I totally relate what you are saying about being the same person on the inside, but not being able to act on it. We kinda need to find ourselves again.

What is really working for me right now, is to surround myself with positivity. I will often listen to TedTalks ( http://www.ted.com/talks ) - you can choose whatever category you like (inspiring, funny, courageous, etc) and whatever time frame you have to listen. There are so many awesome stories and ideas that people have - it really helps to spark that kind of thinking. You might actually find a new interest through that or tap into a familiar one. I love starting or ending the day with this.

I also posted about this awhile back - free on-line courses (www.coursera.org) that start throughout the year. There should be something of interest for almost everyone. I started a Personal Finance course in January which is helping me to feel more organized in life and then I started a Fundamentals of Human Nutrition course. The nutrition course is really informative and there are three levels to it, so you can 1. just follow along and learn (no tests) 2. write tests and assignments for a certificate or 3. do tests, assignments and a big project for a distinction certificate. That course started three weeks ago, but anyone can still join if they just want to follow along and learn. Through that course, I was introduced to a helpful progam at https://www.supertracker.usda.gov/ for tracking your diet - if that is of interest. It will tell you if you have any specific vitamin/ mineral/intake deficiencies based on the foods you eat - as well as coaching you on your goals. I'm hoping that some diet tweaking will help overall health.

The benefit of these courses is that you can do the video lessens whenever you can and pause or break in between. Some weeks or days it just doesn't happen, but so far it's working out ok. One of my courses has an enrollment of 90,000 including people from all around the world - amazing! I would never be able to commit to going to a class at a certain time or have the extra income to do it.

Mostly, it just feels good to use my brain and feel like I'm contributing something to our household. I've also begun a weekly menu system which makes things much easier for me on a daily basis. Actually, I adapted a great menu/organizer that someone else created on-line. My husband does almost all of the grocery shopping, so the menu helps him to minimize his trips to the grocery store and being organized means that I always have what I need on hand. I'm sure we are saving money this way, too. The biggest part of that for me though, is that I don't have to waste energy during the day trying to come up what's for dinner. I find I only have so many decisions in me, then I'm done.

Another quick pick-me-up is the website www.1000awesomethings.com The author came up with this website after experiencing some awful things in his life. He created it to help him keep going every day - starting at 1000 then counting down to 1. He added one awesome each weekday.

I hope you find something to tap into your inner Naomi :)

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I'm the sa,e way, Naomi and its so hard. I constantly feel the need to be occupied although I feel terrible. It's strange. My mom tells me to lay down and rest till I feel better but 1- it doesn't go away and 2- my mind doesn't stop.

Crocheting is easier than knitting. Or there's beading like someone mentioned earlier. I don't know of any crafts that don't take eye focus. I've searchd but haven't found :/

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I have become the queen of crafts through being housebound. I knit, crochet, spin and dye my own yarns. I sew, embroider and cross stitch. I do paper crafts such as card making, teabag folding and I am learning how to air brush the body shells for my husband's radio crontrol cars.

I recently rekindled my love of creative writing. Last year I wrote 4 novels and I have self published 3 of them. What with looking after a husband and 3 children under the age of 12 I don't have time to be bored!

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Wow, Clair where do you find the energy & endurance???

I've dyed some yarn and thought about spinning but it didn't work out. I admire people who do :)

And 4 novels in a year :0 it's taken me a year for one!

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I don't do those things all the time! I'm lucky if I can do anything for 20 minutes straight but I give it a go. I'm a highly motivated person and I find focusing on things helps me deal with the pain I have. Spinning is surprising theraputic. I have a double treadle wheel so if one of my legs is bad the other one can take the strain, plus you get georgous yarn to knit with :)

My writing has been very theraputic. I've had an injury to my shoulder and elbow that means I can't knit at the moment so writing has taken it's place. I write everywhere, in a notebook with my fountain pen, at my desktop PC and even in bed with my tablet and portable keyboard. Once I get an idea in my head the words just flow. I guess I'm lucky to have so many creative outlets.

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I started learning a new language just before I got sick. Actually I was about to leave on a trip to practice what I've learned. That trip was canceled from a hospital bed but I hope I can get myself well enough to travel. If I didn't have that, I think I would go crazy. I do online language exchange. It's a lot of fun and gives me an opportunity to talk to people. I miss that since I can't attend many social gatherings.

I also exercise, watch movies, listen to music, do scrapbooks, cook and bake when I feel well enough to do it. My daughter's boyfriend gave me a cook book full of gluten-free recipes as a Christmas gift. I try at least one a week.

I also paint on glass. I sell my paintings, but enjoy doing it, too. Sometimes I'm too dizzy to paint a straight line or tiny details. It's frustrating.

I live in Florida, so right now is the best time to enjoy outdoors. When I can't walk, at least I can seat outside and read a book. My garden is begging for some attention but I'm not well enough to do weeding and planting. I've tried a couple of times.

I have heat intolerance so actually I don't look forward to summer time.

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I try to do homework/ schoolwork. I have to take a lot of breaks. Also, some small chores. I like to do my hair and makeup on good days because it just puts me in a better mood :). I do art and walk my dogs when I'm feeling up to it. I totally know how you're feeling. I don't accomplish a lot most days and it's very depressing when I really want to get out there and make a difference in the world.

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My mornings are slow, while I drink my morning prune juice and fluids and wait them to kick in I play on the ipad since I am in bed. I like the games you can play against people(like gems or words with friends) and I have found lots of people who are pregnant on bedrest or have other chronic conditions playing. I then turn on some background noise tv and do some back excerises from my bed. If I feel well enough I use the recumbent bike. I try and make some special treats, cookies, cupcakes etc for the many kids that will come home from school. I wash my hair every other day which takes about an hour including recovery time. If I can I have make senior citizen neighbors that are widowed or have few local friends, I try and visit with one of them if I can a few times a week.

The things that make me feel useful are best. I have lots of kids here after school and on weekends. Our school district has low budget and cut all the extras.My husband made our basement so cool for me. I have an art room, library, gym, arcade, music room, school room and computer room. I give little mini lessons like 20 minutes of foriegn language, science experiments, art projects, geography, and advanaced math. the kids that come regularly are all in the honors program now(several went from IEP to honors so I feel like Im making a difference). When they are at school I plan elborate scavenger hunts, games like the amazing race or the mole and make secret packets and clues for the kids.

I came to the area I am in now to research a specific religious group. I still do some research and since that group is a hot topic and Im emailed or called for first hand accounts since I have been where few people have been inside that group. I work with women trying to leave that group or other abused women that are seeking legal help or divorce (I did not finish law school..but our area has not free legal aid so my half a degree is better then none). I only do what I am up to but sometimes feeling useful with the extra kids or women really help me feel better mentally even if my body feels bad.

I also make sure I walk my 10,000 steps even if it is just around my house everyday.

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I have been mostly homebound for the last 16 months. I stopped driving 9 months ago, so that has taken away a lot of independence. I have a 19 month old baby so I hang out with him all day. I sit on the floor and play with him. I have also been getting a little crafty, just things I can do sitting on the couch. I try to do a least one small chore every day. I am also taking online classes toward my MBA, so that takes up some time. Truth be told, I watch a lot of tv. We have Netflix streaming so I have watched several tv series that I never saw before. I only feel pathetic when I end up watching a marathon of Dr. Phil. I also try to go to a store one time per week with my husband. Some weeks I will have the list made, but I won't be able to actually make the trip for several days, I have to wait until my body is ready. I have been really surprised at home quickly the months have flown by. And during the few instances that I have a good week, my husband and I went out everyday.

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The computer is a lifesaver for me, and as well as the laptop, I've recently acquired a tablet which I adore. It means I can finally read books again, after years of my eyes being bad due to the ME. I'm fond of audiobooks too. There's a whole world out there on the internet, though I would caution you to keep an eye on your stress levels. Hanging around too many illness sites (this is one of the saner ones, I must admit - the ME forums can get rather heavy), or other sites where people have bad manners (ever linked someone to a newspaper article with the caveat, "Don't read the comments"?), can turn out to be pointlessly stressful, and it's easy to get hooked in when you have nothing much else to do.

I watch lots of TV shows too, you can get practically anything and watch it on a computer.

Some people like the radio, though I've never really got into it myself.

Crafting is popular for good reason. Most of my friends are knitters, and indeed I go out to a lovely local knitting group once a fortnight (my main social life!), but personally I am a quilter, and absolutely adore it. I may only be able to do a small amount at a time, especially since I've developed RSI in my hands and forearms, but I still have a wonderful time. Today I handed over a baby quilt I've been working on, on and off (more off than on), for nearly a year, and it was really great. The online crafting communities are generally good as well.

I must say, I really envy those of you with gardens. I live on the first floor (in British; in American, that's the second floor) and can rarely get down the stairs, plus the nearest thing to a garden here is an overlooked gravelly area with some municipal-type shrubbery which is down two flights of stairs at the back, and it's not like there's anywhere to sit.

I chat to my friends, both on instant messenger and over the phone or Skype. My knitting group is largely disabled (and queer, and green, and feminist, and generally lovely), so I've got a good support group there.

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