What Do You Do To Entertain Yourself?

[kschoon777@yahoo.com]

I have PAF (orthostatic hypotension) and can't stand for very long. Also, if I sit at the computer too long I have horrible neck pain and have to lay down. I'm pretty much homebound. What does everyone do to entertain themselves during the day. I can read for a short time before my vision goes and I get dizzy. I'm soooo bored. Any suggestions?

[dawn]

I listen to books on tape. You can get good deals on Amazon (new and used). The library also should have them.

My son recently bought me a laptop, it is so nice. I can lay on the couch and prop with pillows and read and shop.

I also use a clipboard and prop on the couch and write cards or just doodle.

Dawn

[Guest tearose]

I have tried doing some hand sewing and latch-hook rug hooking. The rug hooking kits are small and manageable and you can get them at a craft store. I enjoy sewing more because I am able to start and finish in a shorter amount of time and then feel a sense of accomplishment. The rug hooking just seems to never end!

Once I realized that I needed to feel a sense of completion about things in life, I began writing poetry.

I highly recommend this!

You don't have to be fancy or fussy or lengthy. Just write!

Is your PAF slow moving? How are you managing?

There was no chronic illness support around here so one other thing I did was to start a support group. We start in October. If I learn of any other manageable hobbies, I'll let you know!

best regards,

tearose

[kschoon777@yahoo.com]

Thanks for your suggestions. I could go for a laptop and shopping. That sounds fun. and the books on tape is something I though about but just haven't gotten any yet. I may even try crocheting. It's been years since I did that. I'm not a very creative person when it comes to writing, but I could give it a try.

My PAF has been very slow moving but it seems to be progressing lately. I take midodrine, florenef and octreotide. The octreotide works for about 1 1/2 to 2 hours and then wears off and I can only take the injection twice a day. I'm taking the a very high dose of the midodrine and it doesn't seem to work as well as it used to. I'll be seeing my dr. next week to see what we can do.

Thanks again.

[Sunfish]

hi karen -

i have a type of progressive autonomic failure myself, though i suppose that's not so relevant to your question as is the ability to keep oneself occupied in the midst of physical limitations. i am the QUEEN of entertaining myself. i can honestly say that i have never been bored in my entire life, and that includes months in hospitals, months bedridden, years being unable to get out of the house often, etc. this does NOT mean that i don't miss terribly many of the more active things that i'm no longer able to do and once loved, but not once have i felt bored or unable to keep myself busy; quite the opposite, no matter what my health limitations i always feel as if i don't have enough hours in a day to do all that i'd like, even if just to live, to be, to exist, etc. i am one who likes to write (one of the many things i don't have enough time to do as much as i'd like) and i have literally written about wishing that i didn't have to ever sleep at night, or at least wishing that an hour of sleep would suffice as if it were the 12 or 14 i do best with. i've had fleeting thoughts of feeling as if sleep is a waste of time for many years but having come perilously close to losing my life on more than one occasion in the past few years and knowing that my prognosis comes with a life expectancy that's significantly shorter than "normal" my thoughts & feelings on the subject (sleeping being a waste that is) have only increased exponentially. there's simply too much to do, to learn , to enjoy, to take in, to appreciate, etc....no matter what our limitations may or may not be. i'm not trying to be all pollyanna-ish - i DEFINITELY struggle with & get frustrated by my limitations and the MANY things i cannot do - but i guess i'm just trying to encourage you by letting you know that i have zero trouble entertaining myself no matter what my level of limitation; though i'm able to get out more now that i have been at some other times in the past few years, i'm blessed in that i seem to be wired without a bored gene b/c even when literally stuck in bed for months i've never felt bored. i know that it's something others struggle with though so if there's any way i can help with ideas & brainstorming of my busy-making "stuff" at ANY level of functioning, i'm happy to do so.

before listing some ideas though, i also want to say that i'm a big proponent of the things i'm doing with my time, or perhaps more accurately the life i'm living, having meaning; i'm not into "just surviving" or keeping myself busy solely to pass the time in order to get through one day only to start another. i believe firmly that living should be, and is, full of much more meaning than that, something that i know can be a struggle for those whose lives are frought with physical limitations, particularly when these limitations mean that the person can't work, can't "do" other things for others or even for oneself...be it housework or cooking or caring for children or anything else. it's often these sorts of "doing" that we - that our society - places the most meaning on for value, but they're not the only things that have value, nor are they the only types of "doing" that bring meaning to our lives &/or the lives of those around us. i know you didn't ask for a lecture, so perhaps i should apologize for stepping up onto a soapbox, but in thinking about the post a lot of these things, and the ways i've struggled with redefining my life in recent years, surfaced for me & i felt the need to share. perhaps they'll help someone else & perhaps they won't, but i i'm guessing that i'm not the only one who has had to redefine what it is to "do" in a life that's much different than how most others live (and how we ourselves once lived). that said, i do NOT mean that everything we do to fill our time needs to be deeply meaningful in a profound way! relaxation is vital to good health, as is laughter, so these & other things that may seem to not equate to "doing" anything are still full of their own meaning & usefulness b/c they help us to be the best we can be, to do other things in the best way we can, to recharge & refuel our bodies & minds & spirits & souls. i guess what i'm trying to say though, seemingly not at all effectively at the moment, is that no one needs to settle for just "keeping busy" in a way that doesn't have meaning for them &/or for those around them...something that i suppose is equally true for anyone & everyone, regardless of whether their health would be qualified as perfect or horribly unwell. ah well. i knew what i was trying to say...actually saying it seems to have turned in to something else all together. moving on....

as for actual ideas, others have already mentioned some that would definitely top my list. first and foremost, i cannot imagine life without my laptop. from its instrumental role in helping me to finish college some years back to keeping me connected to the outside world during the times in the past few years that i've been relegated to home or hospital or even bed, i could probably write an essay on the many things my computer lets me do &/or helps me with, including but not limited to keeping in touch with family & friends around the world, connecting with others struggling with similar issues (i.e. DINET), researching everything from current events to how to keep my orchid & bonsai alive, managing my finances, organizing & listening to photos & music, watching movies & television shows, creating gifts (photo items & CD mixes), maintaining my website (sort of...i'm WAY behind), communicating with some of my medical team, shopping for anything from boring (but needed) toiletries & medical supplies to electronics, clothes, & gifts (retail therapy!!), reserving & renewing library books, renting movies, volunteering online (i.e. DINET, presidential campaign), playing games, etc. i'm sure you more than get the picture that i'm pretty keen on my laptop and all that it allows me to do a lot while reclined or lying down almost entirely flat. but i'll move on...

despite my love affair with my laptop, i don't spend all of my time on the computer nor would i advocate that for anyone. i haven't been able to to stand for any substantial period of time for years so none of my activities include standing (other than perhaps getting up to get something that's close by, something that i do on my own when able but that others have done for me at times when i literally am bedridden). i've had times when i couldn't sit upright for more than a few minutes at a time wherein now, on a good day, i can sit upright for several hours if my feet are elevated; some of the things i'm mentioning would be tough to do entirely flat and aren't things i did during times that i couldn't be at least semi-reclined up for 20 minutes or so, but it doesn't sound like you're limited to being entirely flat so pretty much all of the ideas should be doable for you, tough my definition of "doable" includes some creativity at times, i.e. laying craft items out on the floor or on my bed around me while i'm semi-reclined with a tray next to me or on my lap rather than sitting up straight at a table (in the past i've also sat on the floor & used a coffee table as a work surface; it still requires sitting up but is at least better for keeping legs elevated; though the same thing can be done by propping legs up on a second chair at a regular table the floor has often worked better for me).

having a handful a different size pillows available can go a long way for propping yourself up in or on one's bed, the floor, or in a recliner as well, which helps one to have a wider variety of options when trying to do different types of activities. as dawn mentioned a clipboard is useful too...and for more than "just" writing on it. i also invested recently in a nice lap-desk type thing. i've had a hard tray with folding legs for a long while that serves as my medical "table" for my IVs/ sterile procedures from bed and has been great for some crafty activities as well, but my new one is one of those "desks" that's hard on top & soft underneath & i'm loving it! mine has a fairly large surface, a light, & storage inside, but they come in all varieties & with a wide range of purposes in mind. some are tailored to dissipate the heat put out by a laptop, others to hold up a book or magazine, etc., but most can be used for more than solely their advertised purpose. and since i'm already on the topic of "helpful accessories for living a life reclined" (do i hear a book title?!) i'll also mention a cool "space pen" that's been my saving grace at times that i've not even been able to stay reclined for any significant period. i first got it years back when i coached swimming b/c it could write when wet, but the reason i'm mentioning it now & why i've enjoyed it in more recent years is the fact that it can write in any position, i.e. upside down, such that no matter what position you're in the ink won't get moody on you. and while more costly than the pens i usually use (i.e. ones from drug reps!) it wasn't too expensive & has definitely been worth it.

others have mentioned shopping online, making cards (things categorized as "scrapbooking supplies" are great for this), crocheting, writing, sewing, latch-hook rug hooking, and books on tape. i do a large percentage of my shopping online, and for a wide variety of things. i can get out now some but if i went out shopping for all my necessities (toiletries, etc) i would never be able to get out to go anywhere else so i like taking care of those more boring items online so that i can use my "going out energies" for things that are a bit more exciting than buying toothpaste. and while my family could (and sometimes does) pick things up for me at the store, it's sometimes nice to have the independence of doing it myself via the computer. i will also buy things i'm not sure about that can be returned to a local store; at a point when i couldn't leave my house at all & was really wanting a pair of jeans that fit me, i bought around a dozen pairs online so that i could try them on as i was able and my mom could then return them...not something i'd suggest doing to family members often, nor without asking them in advance, but a method that's allowed me to fulfill my shopping "need" at times when it couldn't have happened any other way. if you're savvy you can quite often find deals for free shopping and/or other discounts at many online stores, and as i mentioned many (though not all) online retailers that also have local stores allow things to be returned to the stores themselves which eliminates having to pay for return shipping. i used to shop that way even back when i was working since i had little extra energy to spend time at the store; i'd buy enough online to qualify for free shipping, try everything on in the comfort of my own room, then return the rejects in a 10 minute trip to the store that otherwise might have been 2 hours. some retailers also have opportunities for free shipping not only for you purchase(s) but for returns as well. in addition to the "retail therapy" element of shopping online, the ownership over my own purchasing decisions, gift buying, etc has also allowed me to maintain a little sliver of independence that, as least for me, is really valuable. it is of course important to be smart with your online shopping, or any shopping for that matter, as i know that there are times that i could easily go overboard and buy much more than i need and than my budget allows. done wisely, however, it can be great in more ways that one. i hadn't really thought it through so much before writing this right now, but in hindsight it's not a stretch to say that it's had a positive impact on my quality of life. but enough about that...i seem to be having no trouble rambling on about just about anything tonight, eh?!

i'm also a crocheter, and am hoping to learn to knit soon as well. most of the crocheting i do is pretty simple, such that one i get going it doesn't require much focus on a pattern and, as such, doesn't require that i'm as "on" health wise as something more complex might and/or allows me to do something else at the same time (watch TV or movie, listen to music, etc). recently i've been making a lot of baby blankets; my friends seem to be on a roll having babies & i love homemade gifts (both giving them & receiving them), so two things are accomplished at once. some of the yarns available now can make the simplest item quite impressive, so if picking up a crochet hook again sounds appealing to you it might be something you enjoy & could use as a way to make some holiday gifts for friends & family.

on the topic of crafts, there are ENDLESS options that could easily occupy you for hours on end. the key is probably to find what is most appealing to you; while anything will take a bit more effort initially, there's no point forcing yourself through something that doesn't peak your interest. i'm pretty into beading, as are some others on the forum. last year i made book thongs for all of my family & friends, which are essentially a string with beads on each end that lay in a book with the beaded ends sticking out to serve as a bookmark; they're easy, relatively inexpensive, don't have to fit the person (like jewelry), work for guys & gals, & can be very personalized (via charm on the end & colors used). i received one from a friend around this time last year (purchased from a bookstore), decided i could make them myself, & off i went for the holiday season. now, after not touching my beads for years, i'm back into making jewelry too and have actually had several people offer to buy things from me; in addition to beading i'm playing with some wireworking as well, which is essentially using a special type of plier to bend thin wire into jewelry. while any or all of the stuff can become very expensive if one gets carried away, it certainly doesn't have to be. and if you can't or don't want to spend your energies at a store, anything you might need can be found online and/or through a catalog. as an expansion to the beading idea, some on the forum have made specialized medical ID bracelets with their own beadwork.

in the realm of yarn, felting is something that's pretty popular these days, though not something i've tried yet myself (on my ever expanding to do list!). using paper, there's the already-mentioned cardmaking, scrapbooking (anything from a past trip to a pet to a family member to a holiday), something called quilling (essentially rolling tiny pieces of paper up into little scrolls to make various designs; could be used with cardmaking or for anything from making ornaments, decorations, etc), and probably other things i'm not thinking of at the moment. to round out craft ideas, there are things like calligraphy that you could get a book to help you learn. i have zero talent when it comes to drawing & painting on canvases, but if it's something that appeals to you it can definitely be set up to do from a reclined position. i have done some craft-type painting of objects (boxes, trays, etc) combined with decoupage to make personalized gifts with sentimental items (an invitation, photo, etc). i've painted/decorated clay pots in the past as well. there are loads of little kits you can buy for fairly small amounts, particularly if you catch them on sale, designed to get you started on any number of various crafty pursuits. just last week i bought one that has all i need to make several little bags/ pouches out of cute-colored felt & black string...sort of an elementary sewing pursuit i suppose (it was only $5 & the colors grabbed me!), but there are loads of similar things available these days that might spark your interest in something. i'm sure there are still many other things i'm not mentioning in the craft department, but i'm sure you get the idea!

in other departments, i enjoy sudoku. there are several card games that can be played solitaire, both with a traditional deck of cards and specialized games. it definitely requires that you be "on" cognitively, but one of my favorites is called "SET" and can be played alone or with any number of other people. i'm not a video game person generally, though there are obviously endless options of that type of thing; i do enjoy tetris & have thought about finding a handheld version though am afraid it might end up eating time that i'd really rather use for more useful pursuits! (i wish i could rent a Wii somewhere for a week or so; it's too much of an investment for me to consider purchasing but i'd love to try it out!) there are a number of games that you can play on the computer though, online or otherwise, and many are free. i tend to like things that challenge my mind & think some DINET members have mentioned playing nintendo's "brain age" though it's not something i've tried myself.

when it comes to reading, i've had periods up to 8 months or so when i couldn't read at all b/c of where i was at health-wise, so definitely understand that it's not always an option. i LOVE to read though so soak it up when i can & have done what i can to figure out anything that might help me to do so more. obviously we're all different, but i know that sometimes when i couldn't focus on a book i could still flip though a magazine or a book that wasn't a "straight read", i.e. a book with pictures & captions mixed in with some text, cartoons:-), etc.. sometimes larger print also helps me to be able to read longer, and the biggest factor for me is my position. i can't ever read for long if i'm sitting up, but on a good day (during periods when i can read) i can read much longer if i'm lying down (almost entirely flat). i've definitely used books on tapes at times too, though i seem to have trouble at times concentrating. the quality of the reading definitely factors in, but sometimes i just can't concentrate no matter what. at times it's better if i do two things at once, i.e. a simple craft project + a book on tape...not sure why doing 2 items makes it easier to concentrate but it does! for some reason i've found that books read by the author tend to be read well, and the harry potter books are read AMAZINGLY....you almost feel like you're watching a movie! i haven't listened to loads of the books on tape so i'm sure there are many others that are great too, but they're definitely not all equal. and whether it's books or books on tape or magazines or how-to books (i.e. on any of the crafts that i rambled on about earlier) or CDs or DVDs the library is a GREAT resource. i may be spoiled with a particularly wonderful library system where i live, but most libraries should have a good number of resources available for no cost (or sometimes a very minimal cost for some things, i.e. new release movies). if getting out is (or becomes) a problem, most libraries have home delivery services too; at times they are advertised as being for seniors but if one exists it's available for anyone who has a hard time getting out. you don't have to be 100% homebound either to use the service; i mistakingly thought that myself but after calling several times to ask for extra renewals (more than typically allowed) b/c of being too ill to get to the library on that day the library convinced me that anyone who has trouble getting out to any extent on a regular basis is welcome to use the delivery service; i don't any longer as my mom now serves as my "delivery service" (as she likes to go herself), but when i lived on my own it was a great gift....and it didn't mean that i still couldn't visit the library myself on occasion if able.

sometimes deciding on a subject to study or a project to work on can give more shape or meaning to what otherwise can feel like random activity, i.e. reading about a particular plant that you own to learn how to keep it alive, learning a craft to then make as gifts, reading or listening to all the books written by a particular author, etc. for my movie watching in recent months i've actually been watching all of the academy award best picture winners from the inception of the award ceremony (1928) to the present; it's turned watching movies, some of which i certainly never would have watched otherwise, into something that's felt almost like a class on the history of film rather than just watching movies. not that there's anything wrong with just watching movies (something i also do plenty of!) but i've enjoyed the extra depth of my self-prescribed movie project (and would certainly recommend it to others!) it's turned times when i'm too ill to do anything but watch a movie into my feeling like i'm still "doing something" too, as i still get to check a movie off of my list!

i'm also a bug proponent of writing & would encourage anyone to find the way that feels most comfortable, whether poetry, fiction, journaling, or anything else. i don't write as much as i'd like as i have a hard time restraining myself once i get started (can't you tell?!), but have done so extensively at certain points in my life & am confident that it has left me a better person for it. if you have trouble getting started, there are various journals that have prompts, or other similar utilities, that can serve as a way to get you started & get those creative juices flowing. if you (and/or anyone else) would be interested in starting a writing club wherein we'd share things we've written, i'd definitely be game. perhaps i'll start another post to mention the idea....it's one that that popped into my head. for me i write things that would be considered journaling, as well as essay-type stuff on various topics & some poetry. some of my writing revolves around my faith life as well as a part of bible studies/ discussion & prayer that i try to make part of my life on a regular basis. writing letters to others, either on paper (people appreciate "real" letters even more in this day & age) or via email also counts as writing. some people enjoy keeping blogs regularly as well to share their writing with others; i have a website myself but have mostly used it as a tool to keep people up to date rather than for frequent writing (though i haven't touched it since january at the moment....yikes).

hmmm...can there possibly be anything else that i've left out? ah...i have a DVD recorder that i'm going to use to put together old home movies onto DVDs for safekeeping of our family videos. once i get myself going on it it will be something i can do while lying down or reclined the majority of the time but obviously required the initial investment of the DVD/R, though it's one i've enjoyed wholeheartedly already since getting it at the beginning of the year. i think for me, in addition to being blessed with a "can't be bored gene", my stubborness in wanting to do as much as i can do has helped me to figure out creative ways to do things that some might think require needing to sit up straight at a table. i suppose i've made some messes in the process, but nothing that's left me worse for the wear (other than finding some beads in between my sheets on occasion!). an old sheet or towel to lay over the bed or on the carpet is a worthwhile investment though that can save some headaches later on.

last but not least, i enjoy talking on the phone so spend some time doing that, though not as much as i used to. in addition to more typical phone chats though with friends & family, sometimes there are volunteer opportunities you can participate in by phone as well. churches or senior centers sometimes have people who are ill or elderly and unable to get out of the house and thus appreciate hearing a friendly voice on the phone just to let them know someone is thinking of them. some political campaigns have systems set up wherein you can make phone calls from the comfort of you own home (or bed!) to help promote your favorite candidate or issue; i've done this some for the current presidential election & have really appreciated being able to be involved.

okay...i really think i need to shut up now. i cannot believe i've written so much, and hope that there's at least something helpful in the midst of all my ramblings....sorry for taking up all your sitting at the computer time though. i don't usually write quite so much but suppose my plethora of interests made themselves known once i got going here, eh? part of the reason i don't post all that often is that i tend to write so much when i do....i suppose i proved my point there, eh? if there's anything in my ramblings though that you have questions about, anything you need help figuring out how to do creatively within particular constraints, etc, let me know & i'll do my best to help in any way i can.

good luck!!!

melissa

[dizzygirl]

I order from netflixs... and i really enjoy scrapbooking..reading (though books on tape/cd are a must these days).. uhm crochetting..quilting.. sewing..i like to design clothing and little crafty type of sewing projects....

i love to take photographs when i'm able to be upright...

my computer is a must inlife.. I use it to keep in touch with friends and family... I blog... and write poetry...

rare trips to the craft store always excite me !!

Uhm unfortunately I spent alot of my day sleeping...and I'm working on getting a wheelchair that will fit my current needs better and allow me maybe alittle more "time" outside of the house... as it is going to be a powerchair that will have a power foot rest and totally recline back.. so I'm excited to maybe be able to leave the house alittle more easily if i can totally recline and get my feet up while im out..

Uhm I wish i could think of more things.. but right now this is what i can think of....I hope it helps alittle bit

OH yes.. miss sunfish (soo good to see you on here by the way!!! ) I also shop online! its how i did the majority of my christmas shopping last yr and how i will more then likely do it all this yr!

[kschoon777@yahoo.com]

So many great ideas. I really appreciate all the input. I'm fairly new at being "disabled" (for about a year) and have been feeling sorry for myself and getting a little depressed. Sunfish - you are such an inspiration. I'm going to print these replies and read them when I'm feeling down and bored. Thank you, I enjoyed your "rambling".

I have some really good ideas now.

[flop]

Wow, there are so many ideas on this thread - I'll have to try to remember it if I ever get the time to be bored! When I stopped work earlier this year I was really worried that I would be bored and have nothing to do most of the day. I bought several box-sets of favourite TV series on DVD (Doctor Who, Torchwood, House, Gray's Anatomy, Dad's Army, Red Dwarf) but I haven't had much time to watch them - there always seems to be lots of things on my to-do list!

Like others having a loptop is fantastic, at the moment I am propped up in bed with giant pillows and a "lap-tray" (tray with bean-bag underneath it) with my computer on it. I was very fortunate to manage to buy a new "netbook" tiny 10inch computer last month and the lighter weight makes it easier for me to be online for longer. I spend hours reading and answering e-mails every day, and try to read a decent amount of this forum every day.

I'm fortunate in that I am more mobile and able to get out and about most days, I can drive myself and use a manual wheelchair to do my shopping. (Sorry giggling to myself at the memory of me out last week - I wanted some cushions to match my duvet cover and go on my bed - I found some perfect ones with elephants on in au naturel and bought 4. I then had to wheel myselft the length of the carpark with 4 cushions piled up on my knee, I could hardly see out over the top of the pile!!).

Back to sitting/lying down activities I enjoy origami. I really got started last year when my sister bought me a desk calendar that each day you folded the previous day's page into a different origami project. I keep meaning to try the Japanese good luck charm of folding 1000 cranes in a year - maybe next year I'll start in January and get them all made.

I'll echo the call valuing good audio books. The Harry Potter books read by Stephen Fry are fantastic (just finished listening to book 6 this evening but don't have an audio copy of book 7 so will have to read that the old-fashioned way). I like to get books that haven't been abridged so that I can follow along on paper when energy allows (think this probably links to my being dyslexic). The BBC also sell CDs of plays broadcast on the radio and we have a daily radio soap-opera "The Archers" - I believe that you can receive the British BBC Radio 4 via the internet anywhere in the world and also "listen-again" feature on their website lets you listen to programs at a time that suits you.

Another good thing for occupying yourself (but does require periods of clear thinking) is to do a correspondance course. I'm doing some fairly basic ones at the moment that involve watching DVDs and using a course manual to then answer multipe-choice question papers. A friend of mine who has recently been diagnosed with multiple sclerosis is gradually doing a second degree in human biology via the open university (her first degree was music so rather a change). My sister is doing an open university degree in Mathematics which is enough to make my mind boggle!

Right, I'm going to stop writing before I start competing with Melissa for the longest post of the day!

Hope you're fired up with some ideas to try,

Flop

[Sunfish]

lol...i couldn't help but chime in flop b/c i did the same thing with pillows at the store a few weeks ago flop!!! but i think i managed to carry 6 or 7....had them on my lap, between my legs (they were in a bag), & hanging on the back of my chair. it must have looked hilarious!

melissa

[gertie]

Most days (thank God) I am still able to get up & do some chores. I find that takes all my time with no energy left for hobbies. I can't help but wonder who does your cooking, cleaning, & shopping. Are you fortunate enough to be able to hire help? I am retired, on a fixed income. If I'm not well enough to do, it doesn't get done & there's so much that needs doing. Best wishes to all. Thanks.

[MelissaCrystal]

I just bought a 30 gallon fish tank and put some real plants and neat fish in it. I like feeding them live stuff (like worms and shrimp) so it's really fun for me to just sit there and watch them for long periods of time. It might sound boring, but I don't know... everyone in my household joins me for fish-watching time =)

[MightyMouse]

I volunteer for a health related forum as moderator and administrator...

Also, I photograph moths, butterflies and skippers and the occasional other insect. When I can't do that, I help others identify their finds online on BugGuide.net, where I'm now a contributing editor. My area of expertise is lepidoptera live specimen photos (that means the photos are taken of living insects), the formal name that covers all butterflies, moths and skippers. It means that instead of being on the computer, I'm sometimes hunting in my books... or I'm back on the computer looking at agricultural sites, museum collections of specimens (pinned, dead insects), for one of the tough ID's that not yet listed online in a more accessible, easy to locate place. Not sure why, but I really enjoy the hunt, and putting a name to a photo---and also helping another member find an answer. It's probably no different, really, than why I like being here at DINET. We're all hunting for answers, yes?

Nina

[kschoon777@yahoo.com]

Luckily I live with my daughter and three grandchildren. They're able to help me with shopping and whatever I'm not able to do. During the day they go to school and work so I'm only alone for a few hours. I try to get some chores done during the day, but I don't usually get very far. I just need to feel like I'm contributing a little.

I retired last year but I'm still invited to the annual picnic, which is today. My family is really looking forward to it, but I'm just a little scared I may not last long. Maybe I can lay down in the car if I need to. I'm still embarassed about being in the wheelchair. I know I need to get over it - its all just my pride. And I hate the questions "what do you do with yourself all day?" or "what exactly is wrong with you?".

Aside from all that - I WILL have a good day today. My family does take me shopping or out to eat when I'm feeling up to it.

[MelissaCrystal]

I think it's neat that a lot of you have been getting into different kinds of art forms. I'm actually a professional Illustrator myself, for book covers and videogames. I've always said that the goal of my career is to someday be able to live in my artwork and create new worlds for myself to play in. When I think like that, it makes life so much more beautiful for me. I'm also a big gamer, but that's a little bit more of blatant escapism. But it's fun ;p

[Sunfish]

ah yes, i forgot to add one of my other hobbies.....playing doctor/ nurse! JK..sort of. seriously though, in regard to how i spend my time, though it's not something i'd recommend as an enjoyable hobby for anyone to take up, is taking care of all of my own medical needs. it literally takes me upwards of 2 hours each day, and sometimes more (though not all at once), to do what i need with my meds, IVs, dressings, various tubes, etc to keep myself functioning to the greatest extent that i can, out of the hospital & doctors offices as much as i can, etc. for instance i can't ever just "pop pills" to take my meds but have to put any meds into my J tube so that's an ordeal of its own several times a day. and once a week my shower is my big event for the day as the whole process is 3 to 4 hours from start to finish, after which i'm done for the day. i don't take that long IN the shower, but by the time i do the surrounding medical things that aren't optional that's how long the whole thing takes. so yeah..."playing doctor/ nurse" on myself is probably my most time consuming hobby of all, though the one i'd be most willing to give up if given the option. that said, i'm very thankful to be able to do so much of my own care myself so really should not be complaining.

along the same lines, another one of my favorite hobbies - NOT - is spending time on the phone do deal with various issues related to insurance, disability, doctors, billing, etc. not fun but necessary none the less. even worse than the health stuff itself if i'm honest. but ah well. again i'm lucky to be able to do it (most of the time).

but anyway..i just couldn't resist adding those hobbies on lest anyone think i'm enjoying myself too much!!

karen, i hope your picnic goes well & that you are able to enjoy yourself in spite of the parts that are, by their very nature (questions, not feeling your best, etc) difficult.

alicia, i'm not sure who your question was directed toward re: chores & whatnot, but i'll give a quick answer in case it was to me..since i was the one who wrote out the essay of activities! much to my dislike, i can't do much of anything when it comes to chores anymore b/c of my physical limitations and, for that very reason, had to move back in with my parents after living independently for 9 years. it royally stinks and despite some people thinking i'm lucky to have all that time to do "anything i'd like", i would give ANYTHING, including all of my extracurricular pursuits, so be able to live on my own, do my own laundry, clean my own room, etc. i don't have to worry about cooking b/c, pathetically enough, i can't eat at all. if i could eat i wouldn't be able to keep up with food prep for myself in a normal fashion but could do a bit here & there, could warm stuff up, etc, though at certain times in the past few years i wouldn't have been able to do that. as for cleaning, laundry, etc., i can put away a few items, i could throw a few items in the wash, etc, but i could never do anything fully or to completion. i suppose if i had a wheelchair accessible set-up i'd be able to do a bit more but that's not the case & considering i have to crawl up the steps myself i can't carry laundry with me! but that's here no there. if the bathroom gets icky i have wipes that i'll use for inbetween touch ups though can't handle the full cleaning myself as i can't stay upright that long without fainting. believe it or not i have had dreams about being able to cook full meals (and eat them!), cleaning a bathroom, vaccuuming, dusting, doing laundry, changing my own bed, etc. i kid you not. i manage to make my own bed creatively while i'm still sitting in & then on it...not necessarily the prettiest thing but ah well. i'm a clean/ neat freak by nature & it's frustrating to be dependent on other's whims for cleaning, i.e. i can't hardly complain about dust-balls when they're helping me out, ya know? but i digress....

i DO know that, when you're not in the best of health & still able to do chores to some degree that it takes TONS out of you & leaves you ragged for anything else. i remember well, and i'm sure that you're thinking i'm nuts to wish i was back in that position but i do . b/c the ability to do things on your own, no matter how difficult, is worth more than any exhaustion that is brought on by doing so.

i hope my answer reply doesn't come across as rude or flippant as that isn't my intent. i suppose i'm trying to make a point, but definitely not trying to be unkind in the process. i do have a bit of a sore spot though when it comes to people thinking i'm "lucky" to be able to just enjoy hobbies all day long when that is far from my reality. i don't think you were really saying that, but just last week someone told me how lucky i am to be able to "just lay around & read all the time without having to work" and i hear similar things fairly regularly. i'm not one to complain, but i'm also not keen on people thinking my life is equivalent to sitting around eating bon-bons & being spoon fed, ya know? so sorry if i came off a bit harsh...

okay...shutting up now....

melissa, who is going to sleep to dream about vaccuuming...

[Guest tearose]

This is just me thinking, I am not speaking to anyone in particular...

Reality is for me, the housecleaning has suffered because I pay too much in energy points when I attempt to do it. I have had to learn to cook in a large batch and freeze meals. I often live with dishes soaking in my sink for two-three days after I cook. I have had to accept dust bunnies and cobwebs. I don't welcome unexpected company and I keep up as best as I can. I finally had to hire a service once a month just to know the bathrooms and kitchen will be scrubbed once a month.

I may speak of my hobbies and some volunteer work but if you pay attention to my activities you will see I only able to be outside the home active, about 8-10 hours a week. I am able to volunteer once a month for some things. (could be making phone calls)

I feel it is terrible when I feel I have to justify how I spend my time. Not being able to work for income has plummeted my sense of self often. It is like being in a hellish spot. Just because I can't work am I not allowed to enjoy what little free time I have? It is not like I am anywhere near normal person function but why are we judged when we are out in the world among the normal people?

Oh, well, I guess with this economy I only WISH I could make some money from a hobby or not spend the $100 per month on cleaning, or just help my family financially somehow.

Instead, I try to do loving works of kindness with others and try to carve out a small chunk of time to "entertain" myself in some healthy way.

[lmbutare]

I do a lot of the same things that people have mentioned so far...laptop, TV, books, audio books, knitting, crochet... but I have a few others to add!

If you're really super brain drained, sometimes it's nice to just have a coloring book so you have something to keep you occupied but don't have to think or do much work.

Also, I like to do crossword puzzles sometimes as well as sudoku. I really like to paint but can't do it too often due to illness (I used to paint with oils, then switched to acrylics for toxicity reasons, but now have learned watercolors b/c I can do them laying down). If you are less artistically inclined, paint by numbers would be fun as well and could be done on a clipboard or lap tray.

One thing to mention about knitting and crochet: if you are prone to tendonitis from hypermobility or EDS, BE CAREFUL about how much time you spend knitting. I had severe tenosynovitis in both wrists and thumbs (actually still have problems from it) that kept me from being able to even pick up a glass! I had to wear casts on both wrists for a few months, then braces, and they are finally doing better a year later. So needless to say, I don't do much knitting anymore! I just wanted to put my 2 cents in on this one just to make sure no one else has this problem...

I'm always teaching myself how to do new things (I didn't know how to knit, crochet, or paint with watercolors before I got sick) from the internet (my lifesaver). If your brain can handle it for a little while (I have to really pace myself), you can teach yourself how to do almost anything from the internet. I always thought it would be interesting to learn how to play the guitar as well... And, unfortunately, I spend a TON of time trying to read scientific articles related to autonomic disorders, etc. Magazines are nice too. Oh and I spend a lot of time hugging my dogs for moral support.

[ironsc]

My main hobbies...

I get Netflix, and really hit that a lot. I also read a lot of books, especially from my favorite author - Terry Pratchett. He just came down with Alzheimer's, which is absolutely tradgic. He said he'll do maybe one or two more books, but after that the illness will have destroyed his ability to continue producing his wonderful novels. I really am praying all I can for his wellbeing, and it really was sad when he announced it to the public.

I'm also a computer gamer. Been that way for most my life, really. I have a nice computer chair (combined with my hypermobility and a pillow) to make sitting/laying here completely comfortable. This affords me a lot of time to keep my mind active with gaming. I usually have atleast one active Massively-Multiplayer Online Game subscription, and a couple other games for when I like something different. Definitely prefer the roleplaying games with lots of neat dialog, puzzles, and adventures (almost like living a novel!).

And really, my college classes are quite entertaining, too. I love learning new things and applying it.

Cam

[karenw]

Hi Karen, I have the same sort of problems as you know. Recently, I have started going to a Creative Arts group. It has people of all ages and abilities, some artistic others not, some healthy, others not, aged from 28 to 80+.What is so nice about it is that we are sitting down most of the time!So far we have done a bit of pottery using air-hardening clay, this week we are doing mosaic work with a local expert and I think we are doing some printing in the next few weeks. The lady who runs it is very open minded and we can ask to do certain things which appeal to the group. Someone mentioned making Xmas cards, so I think we're planning on doing that in the near future.

I must admit, I too struggled for an outlet. Doing nothing all day is pretty dull. I did have some other ideas for you though. What about joining a book group? They are very popular here in the UK, and don't demand physical exertion. I have even thought of setting one up if I can't find one. Another suggestion is a Bridge club, or something card or game related.

On the subject of octreotide. I am injecting 3 times a day, 50 micrograms each time.What are your dosages? I find each shot benefits me for about 3 hours, so a bit longer than you, but it does at least make outings possible. Has your doctor said you can only have 2 shots a day?Also, have you found the octreotide is affecting your bowels in any way? Sorry to go off your original subject, but you are one of the few other people taking it, so it's nice to compare notes.I find it makes me have to go more often, and have loose bowels. But definately worth it for the huge improvement regarding standing, dizzy spells etc. All the best, the other Karen.

[kschoon777@yahoo.com]

Hi Other Karen - It sounds like the activities you do include being around other people. I probably need that interaction and the activities sound fun.

Regarding the octreotide - I've been taking 25 mcg twice a day and I told my doctor it wasn't enough, so she said it's O.K. to take three injections a day and I could increase to 50 mcg slowly. Yes, it does affect the bowels, but I don't mind, it's for the better - so far.

I think increasing my octreotide will also help me get out more often and maybe even have sort of a social life.

I'm glad you're doing so well - take care.

Karen

[EarthMother]

This is a wonderful thread! Thank you all for sharing. I needed to stop work 14 months ago (goodness I'm still counting in months!) Initially I worried about bordum but then as the year went on and I got progressively worse my mind shifted to just not being in pain and so desperately miserable all day long.

Every now and then I get an hour or so that I can move around and my favorite passion is cooking. Right before my big crash I was just finishing up a vegetarian cookbook, something I'll get back to when I can sit at a computer for more than a few minutes here and there. Cooking for me now looks a lot different. I bring all of my "tools" on the floor since standing is out of the question and even sitting up on a stool is hard most of the time. So here I am in the middle of my kitchen floor, able to lay flat and rest if need be, with my cutting board, food processor and my pantry and fridge filled with items on lower shelves!

I tend to feel better when I am squatting on the floor than I do if I am standing or even sitting up at a counter. So I have tried to adapt many things to my current situation. For instance, on a good day, I can squat for a half hour or so and manage to take a dustpan and small handle dust broom around the entire floor. This is what sweeping looks like now in my house. On a similar note, a small sponge and bowl of water replaces my steam vac. My house is far from tidy or even clean, but it gives me something to do and I feel I have made a contribution.

~EM