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what do you do all day

newhouse17nnewhouse17 Posts: 133
edited 06/11/2012 - 8:46 AM in Chronic Pain
I would just like to get a consensus of what all of us that have chronic pain do all day. My pain levels hover between 6 to 7 most days and am not able to work or do most activities that a 41yr old woman would be able to do(shopping, house cleaning, laundry, etc.). Am slowly coming to grips with my disability and soon will be alone all day when the kids go back to school. I really don’t have a lot of hobbies because I was a very athletic person before surgery. What do others like me do all day besides read, TV or play on computer?


  • Do college online classes. get a playstation and play video games.
  • Schedule activities to keep yourself busy. Read for one hour, write for one hour (maybe start a blog), each day call a friend you haven't talk to in awhile, start a log of your exercises, if you can't exercise try small stretches or isometrics of each muscle. Pray. Research something that you have always been interested in. Get on Facebook and find your old friends and make new ones.

    It is really crazy but I am always busy even though I am basically in bed all day long.
  • i make a list of things to challenge my brain as i do very little exercises on flare up days....which today is a big one..
    you can let me know good time for you and we can chat in chat room...
    i have started doing indepentant rep job which can't say of course but i'm looking into finding some more work to do online...
    i sure will miss my d she just left sat off to college and my son starts school on 5 days .....
    so i'm thinkin of doing online schooling i started my degree in hospitality industry and even now if i was able to finish i can't do the physical work.....
    so not sure what classes to take i'm waiting to see if i can get ssi and perhaps get some free education.....just to keep my mind working....
    I also have many from sh chat i keep chatting with daily they keep my mind off myself....
    so lets chat sometime and find some ideas for you

    tc and i sure know what your feeling
    neck,bone spurs pain started 04, back issues and fusion l4,l5 06~hardware removed.
    good few yrs. 09 pain sharp, numbness feet,legs, diagnosed fibro, neurop. legs.lung issues.
    daily goal do good thing for someone.
  • I dont have enough hours in the day, still! I work and yes, I normally have a day to recover, but I still enjoy life!

    I have played games online, been part of a clan, voiced on skype while playing and chatting with people from around the word while playing! I never felt shut in at all. I dont play much now, as I am more active, due to taking time to rest and then getting going again.

    I fill my life up with anything I can think of for fun, and if it is too much, fine, figure out a way to modify it! I have many ways of working, including increased pain level activites, backward down to reading or just enjoying a good cigar for an hour!

    To me - this has to be as indivual as you are!
  • I tried to find new ways to do old things. It's pretty remarkable how much of my life I've been able to win back by simply thinking out of the box and getting creative.

  • it depend on how i am feeling .on a good day i may go to the swimming pool and use there hydrotherapy equipment or wash my car or do some house work .but on a bad day {and there are many} i just lay on my recliner and rest and watch tv 'i too am only 44 and get fed up with not being able to do normal stuff ..a typical day before the pain was get up after a good night sleep shower take dog for a 3 mile walk the eat the swim then wash the car and and and !! but now i count my self very lucky if i can managed one of them {the 3 mile walk is not a possibility now }
  • Yeh walking had been something I missed. The stenosis would get so bad, that after 50 or 100 yds, my right legs would ache like sin. After a day, I was just vibrating with pain, and that was before diagnosis and meds that worked to control the nerve and chronic pain.

  • I just hang around and play computer games with my kids, feed my horses, play with my dogs, make lunch for my kids, read some, pick up around the house if I'm able, go to a doctor's appointment, do some paperwork, feed the horse again, take my daughter riding, muck out the horse's stall, come home, take a hot bath, collapse in pain and exhaustion.
  • dilaurodilauro ConnecticutPosts: 9,862
    that anyone with Spinal problems should discuss with their doctors.

    The amount of time spent on a computer

    There has been no medical doubt that many of my flare ups, complications, additional cervical and thoracic problems stemmed from prolonged computer usage.

    I stopped driving into work daily and started working from home almost 11 years ago. That was the only way I could stay productive as a computer programmer.

    But that eventually took its toll. I was having Physical Therapy 2x week, Aqua Therapy 2x week, Deep Tissue Massage weekly, Tens Unit, Hot/Ice Therapy, all sorts of medication because no matter what those treatments did to help me, the computer usage defeated their usefulness.

    When I retired last June, and stopped spending 8-10 hours a day at the computer, I first started to have better days. I have been able to build up some strength and stamina, so that I can spend a few hours a day (maybe) at the computer.

    Its not the workstation environment, its not a desktop vs a laptop, its just repetitive usage of a computer that is naturally not good for body mechanics.

    So, just keep this in mind when you use your computer. My Deep Tissue person feels that 2 hours a day is the most I should ever do. All my medical doctors agree 100%.

    Keep in mind, this is me, with my spinal problems. Everyone is different, that is why I urge people to talk to their doctors about computer usage.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • i have had to back off the computer as it has had my TOS flaring up and i have noticed my elbows and hand ache too
  • I'm on the computer a lot during the day, but I break it up. My sitting is getting more uncomfy, so I get up, wiggle a bit, stretch, gentle bends etc. I also have found that if I am in chat too long, my neck starts to yell as my posture pretty much doesn't change in that activity, and my body yelps over it! :)

    This to do... Play with my cats (I've taught them to fetch and retrieve), do small projects around the house. Swim in my pool. Work bead projects - off loom works best. Yeah, T.V., computer games, blogging. :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I work on average 8-10 hours a day, being in the military there is little time away from work and my pain hovers around a 6 daily and am off all pain killers to do the SCS trial. Free time I go to school and swim with my kids. if I am feeling up to it we go to the store or walk the dogs, just depends on the day.Just try to stay busy as much as my body will allow.
    Live one day at a time and do it with no regrets. I hold my head up high with pride to the fact that i wont let my injury beat me.
    Lumbar surgery 2009
    Cervical fusion C4 to C7 2009
    Neurostimulator 2010
    Heart ablation 2011
    Lumbar fusion L4 to S1 2012 and now L1 2 3 and 4 are split and bulging.
  • I usually sleep until about 11am to noon. Then I am on the computer 1-2 hours a day, but it's on my bed...I lay around most of my day...try to help my kids with their homework. I'm so grateful to my hubby who does the cooking, cleaning and laundry. My days...I'm just so disappointed in myself, but I can't do any more than this.
  • you can only do what you can do .don't beat yourself up and i include myself ..acceptance is part of dealing with CP
  • I usually just watch TV or read as most days I cant sit for long periods and I have had terrible trouble sleeping lately so I try and get sleep when I can
    I also revisited doing Cross Stitch when Im able to to try and take my mind off the pain... :H
  • I get up at 5 a.m. hobble out of bed with my nerve pain out of control and my big joints hurting so bad I almost can’t make it to the bathroom. I take my pain meds (peroscet) and sit on the recliner putting on my make-up (because I’m still a hot chick) waiting anxiously for the meds to kick in. Then I get my hair done, get dressed, go out and feed my horse and other pets and go to work by 6:30. I sit here all day in misery pretty much, don’t talk to hardly anyone because they all look down on me because I AM LATE about 2 days a week and it really annoys them – even tho I use leave and it has NO effect on them. After 4 hours, my medication is wearing off and I could frickin’ bawl, but I have to wait 2 more hours before I’m supposed to take another one. Finally, before lunch time I do, (sometimes I say screw it I can’t stand it) and take one early, then of course I’m in deep doo-doo at the end of the month – but that’s another story. I go home for lunch (don’t take any breaks other than to go out and smoke) so I take an hour for lunch – which annoys the hell out of all the hags too, but I don’t care. I pet my horse, check to make sure he is o.k. (he has serious arthritis issues and other medical issues from being shot when he was younger so he is a constant worry), then I sit on the recliner for half an hour and eat some leftovers. Go back to work till 4 and then go home, feed the animals again, cook dinner and do some housework. In the summer I spend lots of time outside in the pool and on the back deck and try to do as much gardening as I can endure because I adore it! My flower garden is gorgeous and so relaxing to work in. I did it all myself, it has a long winding cobblestone pathway, a pond, trees, gorgeous flowers, it is just beautiful. I cannot do as much in it as I used too and it is killing me not too. Lately I have been drinking a lot after work. It seems to dull the pain somewhat and I am trying to be better about my medication. I don’t know what to do anymore, I am always running short by the end of the month and hurt so bad some days I can’t come to work at all. Then I am laying in bed or the recliner and I hate it! I’m not a big t.v. buff so it really stinks… I wish so badly I could retire (I’m 49) but I have 6 more years at IRS. I cannot afford a medical, but I know if I didn’t have to struggle in to work everyday I would be much better off and enjoy life a lot more. I am usually so trashed by the weekend that I just spend it recuperating. I don’t like my life that much anymore…
  • Guess that was kind of a novel huh...
  • Thanks everyone for posting, lots of good ideas and things to think about. Mouse-really love your reply, I also still do my hair and makeup even though I sit on the couch all day.

    This summer I have spent the afternoons at the local beach but this causes more pain then enjoyment for me but kids need to have fun too. The kids will be off to school soon I think I might try to make a quilt out of old clothing, thought it might be a great gift for someone. Like I said, Im not the most talented person when it comes to crafts. Ill probably sew my hand to something like the grinch!!Im going to try different things like crochet, knitting, maybe even take a jewelry class at local craft store to see what I enjoy the most. Im sure it will be hard, it always is for us southpaws!!!

    I called my girlfried today who was recently diagnoised with MS to ask her what she thought of maybe getting together with two other friends to have coffee once a week. She thought it was a great idea for she is feeling very alone.I hate feeling so isolated when the kids and hubby are gone. Hopefully these things will occupy my time and spend less time thinking about the pain and depression.

    Thanks again-Kathy
  • Newhouse,
    That distraction aspect is key in managing your pain more effectively and you have to see this as an opportunity however limited to do some the things that in you past life were impossible because of the time and responsibility element.

    That quality of downtime soon improves and the more we enter into alternative opportunities the more options we have for additional or creative development. We have to make things happen and perhaps devise CP activity, they may not be the things we would like to be doing, they do have value considering our restriction and I spent some years watching others live go past, anything productive is beneficial as long a it help with managing our condition more effectively, socially emotionally and help with those isolation issues.

    I always had a periodic review that in what I was doing and the plan for the bigger picture, I have had unimaginable success far bigger that I initially thought, I have viewed this as an opportunity to be grasped with both hands.

    Do what works for you and keep adapting.

  • i have had 4 back surgeries and i have to work, need money and health insurance. wife is unemployed so i have no choice. i teach school and also i am looking for a part time job to stay on top of things
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • One interesting thing I did was have a yard sale with a couple of other neighbors across the street because they had already put an ad in the local paper. It took some organizing and only used a piece of tape to put prices on the stuff. I ended up selling half of what I had out and split the money with my Mother who helped me do it. My husband just had to carry the boxes to the curb and a couple of tables to put the stuff and get a lot of change for people who needed change from a $10. or $20. dollar bill.

    It was fun and made $200. and met a lot of my neighbors who I never met before. It helped me organize the basement and get rid of stuff!
    I plan on another sale to sell the rest of the things especially a pool table and some exercise equipment to get rid of.

    I try to get a walk in also everyday around the block and use my stepper and bike for a few minutes daily.

    Sorry this was so long. Anyway loved your idea about a quilt or knitting or crochet. Good luck! TC. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • A fellow southpaw! LOL! Everything in life is backwards isn't it... I love playing guitar and singing, used to be in a band and even had to learn to play guitar backwards because of the left-handed thing. I think getting together once a week would be very nice - I wish I had the time, and a few friends I really enjoyed that I did that with - I really do... Unfortuantely, I am an odd duck I think. I am pretty much a soloist and do everything by myself. I think it's because I have trusted people in the past that have devulged my secrets and did things that I would never dream of doing to someone. Therefore, I don't really have anyone I confide in much or talk about anything serious. It just isn't worth the trouble. My motto is "anything you say CAN and WILL be held against you at a later date". Unfortuantely that seems to be the case.
  • am i the only guy on this site that works or has to work? do any of you have jobs and have to work to keep money and insurance coming? if not you are lucky.
    are you guys on disability or workman's comp? i wish i could hang also. pain gets so bad i have to get off freeway, get out and groan then get back in and drive to school. kids don't care in fact one of my little a...holes stold my cane last year and administrators did nothing about it. i knew who did it but nothing. at least 2-3 more years until i'm 65 or 66 or when my wife finally gets a job.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • No, you're not the only one that works. I have to pay for insurance and all that stuff plus save for two kids approaching college in a couple of years. Retirement seems like a lifetime a way for me.

  • dilaurodilauro ConnecticutPosts: 9,862
    I was fortunate enough when IBM had some down sizing, I was able to retire at the same time last year. So, we have a pension. My wife continues to work, which handles our Medical Insurance.

    I am working part time at a wine shop 20-25 hours a week, plus I have my computer consulting job. Both of those keep me pretty busy. Its not the same money as I was making when I was working full time.

    But as Jon and Dave said, working is not an option, its mandatory.

    I guess we have one advantage, both of our children are grown and on their own. Now, its just a matter of finding something so my wife can retire and we both can work part time.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Jon,

    Like you, until I became eligible, I worked, and like you, had ridiculous pain while doing so. I am now retired, so I guess, no I don't work anymore...

    I now get to spoil my kids (cats) full time!! :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I work too - 40 to 50 hour weeks and it sucks! My husband has hardly any jobs right now either - he is in construction. The plan was for me to take a medical but that ain't happening...
  • my son started high school this year and my wife has been looking for work for a little over a year, accounts payable, san jose area if anyone knows of a job here. i have to work and when she gets a job hopefully soon then I have teacher pension plus a 22 k bonus that i can divide into 3 years. hopefully in 2 years i will have medicare and she will have insurance. if not there are plans where retired teachers can sub and earn insurance money. you need to work 150 school days to qualify for insurance. i would retire in a heart beat if i could. i am so ticked at the economy, 10% unemployment for 2 years now. what a joke.
    thats the skinny
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • The economy stinks, ever since the Edited and it isn't going to get any better. My husband has always had tons of work! He hardly has anything and there isn't much out there for a contractor that's been doing siding, windows, and decks for the last 30 years either. We know so many contractors that are filing bankruptcy and have lost everything! Their wives have never had to work, so they are having a hard time finding anything - similar to what your wife is going thru and it is hard. I wish I didn't have to be the bread winner - but sometimes there is just no choice. I am grateful, my son has been working since he was 13, and saved money for his 4X4, which he continues to pay and his insurance and phone. If I had to pay for all that stuff too - I'm afraid he would have to sell it. He is a senior this year and on work release so he can continue to work, thank goodness!

    Post edited to remove politically sensitive comment by Moderator haglandc
  • I wish I could go back to work but I'm not allowed to work taking narcotics as an RN. I can't stand for more than a few minutes or sit too long and even have pain pulling my bathroom tap on. The only way I could do the yard sale was stand a few minutes and sit then go in the house and lay on the couch while my Mother handled the yard sale and it was only less than 6 hours of work. I can ride my electric bike for 10 minutes or go for a walk around the block with my cane but not everyday. So I'm on LTD from work and trust me very deep in debt that we may lose our house. I wish I could get back to work and was thinking I would like to work in a Drs office as a Receptionist but I can't sit too long or file charts so I think that is out too. Yeah I'm real lucky I don't have to work! image
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
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