housebound adjustment............

Discussion in 'Fibromyalgia Main Forum' started by caroleye, Nov 10, 2006.

  1. caroleye

    caroleye New Member

    I know there are many of you out there, and as many years as I've been dealing with this illness, it's only been the last couple of years that I've become totally housebound.

    This is the part I'm wondering if anyone can relate to. As a child and on through my life, I was "never" into my home. Always my career, school, and outdoor activities.

    I have over the years done the arts'n crafts, paintings, studying all types of cultures, etc., etc. til I burned out on that.

    Now I'm thinking "what's next"? Only so much computer or you crash; only so much T.V. or your eyes give out; no energy to do other hobbies (or interest).

    Talking takes me into a crash, and no-one understands that part anyway.

    So, how are you handling it? I guess my only blessing I hold onto is that I'm in my 60's, and not my 20's.

    Downer question, but sometimes others' words "click"!!

    LIGHT*************carole

  2. greatgran

    greatgran Member

    Hi Carole,

    I too am in my 60's and feel exactly as you do..with no answers..I feel guilty because I can't enjoy my family and grand babies..They can't depend on me cause I never know from one day to the next..

    I have tried pushing and making myself do only to pay the price..So what to do with me, I get bored just being around me and often cry and don't know what I am crying about..

    Seems I can't find a thing that I want or can do..Will be watching the post to see what others say...

    Sorry, I have no answer but just wanted to let you know I sure can relate to how you feel...

    God Bless,
    greatgran



























  3. charlenef

    charlenef New Member

    i am 37 and have been house bound for about 3 yrs it has only gotten worse(the amount of time i can leave) i wouldnt feel as bad if i could even sit in a chair for more than 10 min so not am i only isolated from the world but also my family because i spend most of my time in bed.the lord and my children is what keeps me going i try to focus on what i can do instead of what i cant. hope this helps charlene
  4. carebelle

    carebelle New Member

    What I try to do is look at magazines to keep my mind busy. At one point in this DD I was unable to read because my mind was so fogie I couldn't understand anything. As things got better I tried short stories. Mostly I just looked at things in the magazines.
    My computer and this site has really been a blessing for me.I keep my mind busy doing all kinds of things on the computer.
    I do not get out much and I do pay if I go out and do anything .I have the all over achy flu pain so the cold weather hurtsme.I have begun to get out on the weekends again .I only go to breakfast with my husband at Bob Evens.This morning we went and I was sick when we got home I had to lay down for a while.Now I'm extremely tired.But I did it.

    Try to do what you can.But do not over do it.All of that takes time to know how you will react.

    If someone can help you change your furniture around once in a while that helps with the boredom sometimes.Just looking at things differently sometimes.

    Do you have lots of Pictures in boxes or scrapbooks? Maybe its time to put them into order .Write names on them so your family know who's who .You can do this sitting down.My mother years ago made each of us children our own album so when she past away we each could have our own and no one would be left to decide who got what it was already done.

    scrap booking is a big thing now but you can also make it simple.But putting names on picture while you can still remember who's who is a wonderful gift to yourself or your children.

    sorry I got long winded. I have found when I get down like this ,doing little things will keep me busy but not overtire me.Even cleaning out a drawer one at a time every other day.
    I hope this helped you both some.Let us know what you find to do it may help us.
    I hope you feel better soon.
  5. Shannonsparkles

    Shannonsparkles New Member

    :(

    I too have trouble with reading and watching TV and talking and hearing people talk - any stimulus is nearly too much. I like looking out the window at the scenery, but that makes too many neurons fire after a minute, so I have to look away no matter how beautiful it is. Birds are different, though. Looking at birds flying makes me feel better.

    I try not to think about how unfair this is. I try not to think about what I'm missing out on. Avoiding feeling sorry for myself takes a lot of effort, and I don't always succeed at it. It makes this DD easier to take though.

    When I remember my dreams, a lot of times I dream that I've gone back to high school but then I find out that I'm too sick to do the work. That's kind of how real high school was for me. After I graduated, there were a couple of years where I could go for a walk once a week. Then I became bedridden for 23 1/2 hours a day. (The half hour up was in the morning. I'd get all the food I needed for the day and carry it to my room.) These days I lie on the couch.

    I can still read kids books some of the time without tiring myself too much, as long as they're simple ones. They're easier than adult books. Looking at clothes catalogs is fun too. One of the things I do to occupy myself mentally is to plan out what I would write today if I was able physically to write something. Or I replay some of the better points of my life in my memory. I phone people when I can, but there are weeks when I can't. I try to fix the scenery in my memory. It doesn't work well, but it gives me something to think about. I come here when I'm up to it. Rubbing my forehead or hands gives me something to do when I'm restless.

    I think that most of all, the thing I do to put up with this condition is to be as happy as possible with the present and to try not to worry about the future or mull over the past. That takes a lot of practice. I try to take pleasure in being warm enough, breathing, and eating (I eat very slowly because it passes the time). Often my mood is low or I'm frustrated to the max with being stuck on the couch... but I can't change the DD, so I try to change how I feel about it. I try not to think of myself as someone that life ran over with a semi truck, a victim, but as someone who's doing pretty well all things considered.

    It's been about six years with very little people contact, and four years in the house. The years before I got sick were even worse than this is now, so at times I am grateful that the stresses I had then are gone now. And, since I can't see the future, no need to worry about it. Just being calm and steady is the way I'm trying to play it these days. Last August I found this support group, and it's been great for me to have some people around again.

    I'm sure you'll get a routine going. It's a shock... but then it gets to be usual. Grief comes up at different times, but you can handle that too. Everybody finds different ways to cope. And it's good to see you here when you are able to come.
    ((**sending hugs for dear carole**)) Shannon
  6. Gothbubbles

    Gothbubbles New Member

    SHANNON! Hey do a quick search under shannon/shannonsparkles for the title

    I had some posts just for you! Hope you like!
  7. homesheba

    homesheba New Member

    and i think i am not doing well at it.
    people just do not believe me when i say'
    ' i just cannot' do this and that anymore.
    or...' i am too weak or i am exhausted..'.
    i feel overwhelmed all the time,
    with too much coming at me.
    and even family cannot comprehend.
    mom wants me to drive her here and there.
    and what do i say?
    i am like you all...
    i just cannot do it anymore.
    i dont want to give up-
    but i have to...
  8. After the first two yrs, in which all I did was vomit, & sleep, & have surgery, & go to on average 4-5 appts a month, I got a reprieve, for two yrs, each time, it was around mid-end April-August..even though heat could wipe me out so badly I would sit off in space, so lethargic & weak I couldn't talk for quite a while, until my body cooled again (I have another *genetic* disease, that makes me very at risk for heat exhaustion/heat stroke--been there done that with the heat stroke once, in Louisianna.)

    Anyways, those two spring-summer remissions were sooo wonderful, I'd go fishing, flea-marketing, to a state park, with my hubby, I miss it sooo much, and find myself sooo angry & frustrated that I no longer have* functional remissions anymore... I cry, I whine, I feel cheated, etc


    I pray a lot, these days, more than I did pre-illness. Not just for myself, for my whole family, we are all sick, but for my sister & 1 cousin....In my case, it is genetics, from both sides of the family..

    I hate being housebound, especially* when my husband works 72hrs/6 days a week, as he has the past 3-4 months. It gets really hard.

    My sister & I, when I was 'less' fatigued, tried scrapbooking, she's very artistic & talented, but, it only made me frustrated, confused, and feel incompetent again..

    I will just pray for us all. I plan to talk to my doctor very soon, for myself--lately I've been so sick, I had to *cancel* my appts though....sooo doggone frustrating.

    I can't take *any* anti-depressants either, go figure, but, maybe* something for anxiety, and if my pain/fatigue ever gets under control better, I'm ready to do counseling...there've been a lot of family crisis lately, & I gotta do the best to help myself, for me *and* for my husband. We're like patient/caregiver, more than husband and wife a lot of the time......and that's just not acceptable to me..

    Wish I could help too...I can only sympathize..I tried some arts & crafts too, sick of t.v., movies. & internet...but, the computer allows me to sit up for a while...


    Love you all, & I hurt for you all too. ((((Hugs))))

    I can relate to sensory overload so well, too. that does not help with getting out of the house at all either..


    Hang in there, and I will too.


    Laura

    As soon as I find things in *large print* I'd like to start reading again, with the t.v. off, just peace & quiet, & exercizing my brain.
  9. PVLady

    PVLady New Member

    I was also housebound a couple of years ago and I understand how you feel. In my case, by the grace of God, I was able to turn it around when I was put on different pain meds, but I was left with a certain post "housebound" traumatic stress. Kind of funny....but not really.

    It took years to come to the point of being housebound and once I had my pain treated, the first thing I did was get up and out of the house, however, I still feel I am psychologically recovering.

    I developed severe anxiety which is now getting better. I believe that was stress related.

    I have to laugh, but I wound going to a therapist and she said whatever worked for me was fine. Also my pain doctor, even though my behavior may seem strange, also agrees it is ok.

    Bottom line, I know you would not be housebound if there was a choice, but I have one recommendation. Try to get out of the house each day, even if someone takes you for a car ride for 15 minutes.

    The following advice may seem crazy but I have been there, done that.

    There is such a huge psychological toll we when we become housebound. You may be unable to do much physically, but if you can drive a car, and sit in a chair, you might consider going out when possible where you can see other people. Take a tote bag with something to read, pain med, bottled water, and Zicam for your nose. (Zicam is very important to use all the time when going out to prevent getting colds. Also, wash your hands as much as possible).

    Until my surgery a week ago, for over a year I have been leaving the house each day with my tote bag (after enough sleep and rest). I found several comfortable places to go where I can just sit and people watch, have lunch, stay warm then go home. I told myself, unless I am in bed, I can hurt anywhere.

    I am not judging your situation, truly - you may not be able to get out at all, I understand.

    In a way, I am reluctant to post this as I don't want you to misunderstand that I think you have a choice in being housebound.

    I was like you, never a home person. I found a great pain specialist who was the key to me getting out again.

    My last question is if you feel you are getting proper meds for your pain? The one drug that got me up and out was starting MS Contin. I had to stop it after 9 months due to side effects, but went on to another med that helped alot. Before, I ached terribly all the time.

    I am just throwing out thoughts.....






    [This Message was Edited on 11/10/2006]
  10. DoveL

    DoveL Member

    Hello Carole and everyone else that is housebound.

    I am soooo sorry you are going thru this. I saw this post, and had to write you all!! Don't give up hope!! I was bedridden for almost 2 and a half years, and housebound for about 3 years. I too, started become agoraphobic, from not being able to go out because I could not walk more than a half of block in a day, because I was so ill!! Please hang in there...

    MY CFS was SO severe, I felt like I was just going to perish and die for YEARS, with NO relief of any symptoms. I also had Multiple Chemical Senstivities for a while!! what a nightmare.

    My health started to improve after about 5 years.although now I have FMS too)..I tried alot of different things that helped me(nutrition, supplements, proper sleep meds) (read the posts, what has worked for me). After 7 years now, I am working about 20 hours a week, and have somewhat of a life. I have a boyfriend too. Don't get me wrong, I still struggle with FMS/CFS, and everyday life if a challeng, BUT I have come such a long way from being COMPLETELY DISABLED, and don't ever give up hope that you can too!! I was always so thankful when someone who improved networked with me, as it gave me hope.

    Hang in there friends...

    Good thoughts and good Health going out your way from me to you!!!
    HUGSSS

    DoveL
  11. Gothbubbles

    Gothbubbles New Member

    I read comics and play a lot of videogames. Comics are easier than regular books as the pictures help me follow along more easily.

    Videogames are great! Although if I'm too tired to play them I watch a lot of movies (netflix, yay!)

    Crochet has been fun for me too (I keep having to relearn it since I forget how to do it all the time lol) but it is a way to give back to people also (it's productive!). If you aren't having terrible pain in your hands it can help.

    If you're too sick to really do anything, listening to music can sometimes break up the boredom.

    I've been sick now for 6 1/2 years and I'm 25 now. I've had to learn to adjust to varying levels of ability (right now I'm having a lot of violent spasms that interrupt my activities and make me more tired) and I'm more sick now that I have been in years. I've been bedridden many times, though usually not for good.

    I hope this helps!
  12. TerryS

    TerryS Member

    I thought I was the only one who gets exhausted by talking!!! How weird! Five minutes on the phone feels like 30 minutes. I do better in person, but only if I'm lying down and after about a half an hour they'd better leave or else I get over stimulated. Either that or just not talk to me and sit still and be quiet!!!

    I had three friends over early Saturday afternoon for my birthday. They stayed 2-1/2 hours. Thought they'd never leave! Too exhausted to go out with my hubby that night so he brought Chinese in. Spent Sunday and Monday in bed.

    I just came ill with this CFS/FM about 18 months ago and had the BIG CRASH in August this year...was out of work until late October...went back part-time, but haven't been able to do more than 12 hours a week (and that's with my working from home). They told me just today that I no longer have my job.

    I saw someone mentioned crocheting. I like to crochet...maybe I have enough strength to do that. I think I could do it if I can be semi-reclined when doing it.

    Good luck. Maybe we can start a list of things to do to keep us feeling human.

    TerryS