housebound people: do you ever just WANT OUT?

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Apr 17, 2006.

  1. Shannonsparkles

    Shannonsparkles New Member

    Does it ever drive you crazy to know that you CAN'T GET OUT of the house, no matter how much you want to?

    Are there times when you feel ready to tear your skin off if it meant you could feel a breeze on it again? Are there times of grief so strong that you feel, Sampson-like, that you could pull your building down just to be Free?

    The need for freedom is so basic in our makeup as human beings. Wars have been fought for it. Men have lived and died and raised captive children, never having tasted it. Freedom: the ability to go to the right or to the left. The ability to choose; to choose what you will do today and where you will go.

    How do you keep your spirit alive day by day inside the gyprock cage? No person is truly free, of course, in every sense of the word. But most people can choose to go right or to go left.

    OUR right and left can be no more than 10 or 20 feet in any direction, if we are well enough not to be bedridden - which we usually are, if we're housebound. We can't often choose when to bathe, what to eat, even when to make a phone call.

    How does the soul maintain its humanity in this little world? Do you ever just want to go out and run? Do you look at the leaves swaying in the wind sometimes, and forget that you can't go out to be with them? Share how you cope, please.
    ((former hiker)) Shannon
  2. sienna

    sienna Member

    I am like you are a very active person
    ,but it is only in my mind these day. I use to be so socialable, so active. Now the pain limits me....I am not the me I use to be. I am a divorced lady, so I do not have a better half. But my kids will take
    me out every once in a while. I am in a wheelchair right now but I hope and pray that I will be able to get around without this wheelchair.

    You are my sister, so I am glad we have this forum so we can chat. Please do not let it get you down.

    always
    sienna
  3. xchocoholic

    xchocoholic New Member

    Hey Shannon,

    I'm sorry to hear you are housebound. I know I go stir crazy when I am stuck at home for a few days at a time. I can only imagine how it must feel to be home any longer than that.

    Can someone help you get out sometime ? I love it when I have company and they will take me with them even if it is just for the ride.

    I can get out on my own every 3 or 4 days, but only for about 2 - 4 hours at a time. Then it is back to the sofa for tv gazing.

    I try to keep videos in the house that I look forward to watching. It makes life a little more interesting while I am trapped. The library rents them for free. And they might deliver since you are housebound. Or now there is netflix or blockbuster.

    And I start each day by opening the blinds so I can watch the birds and the squirrels in the back yard. Just having the blinds open so I can see out helps.

    Can you get out to the mall and just sit in the food court ?
    I find that really helps me feel less isolated. I like to do this a Christmas time so I can enjoy the music and decorations.

    Hope this helps .. Hang in there... Hugs ... marcia
  4. caroleye

    caroleye New Member

    As the years go on & I progressively worsen, as do those limitations, it's like a "rollercoaster". I was way too physically active pre-illness; lots of freedom; great career; great traveling & having fun.

    Now it's painful for my husband to drive me to dinner, and to face that world, so only occasionally do I go really crazy. And I can get into my garden for short periods just to talk to the plants & creatures out there. No desire to talk to people, as it's exhausting.

    I don't feel "human" anymore, but of a different species on my way out. Being a disabled senior, and having experienced the "other side" actually is more of a comfort now than when I was in my 40's & struggling to be normal.

    Oh yes, those days of running miles at a time.......being an ex-athlete since a child.......that part I try not to remember.

    To cope, I still can take my bath; have my coffee & choose if I was to make "errand" phone calls, or when to pick up the phone. I make no plans with anyone (hermit here). I call it "futuristic" thinking, and that's not in my lifestyle anymore. It's a rough, rough road, and I've cried rivers of tears over these 25+ years.

    Most of us at this level have to in order to survive. Maybe for the younger ones going through this, a solution will appear & give them their wings back.

    LIGHT***********carole
  5. G.I.Jane

    G.I.Jane New Member

    Hi Shannon :) I had a chest muscle injury at the beginning of 2005 (have FMS) and for many months I couldn't get out - I could barely move. Slowly I've improved over the last year+, I can get out a little now and it's wonderful. I appreciate everything I see in a different way - I don't think I ever really looked at things before. I had a nasty flare the past three weeks+ that kept me indoors for the most of it - it *is* so hard to not get out or go where I'd like and do what I want, when I want. I understand how you feel completely. I try to enjoy my time in since I have no choice about being in sometimes.

    Mindfulness meditation has really helped me feel accepting about my situation. It's like I find the gardens inside me since I can't go outside to them. You sound really outdoorsy - I am, too. I focus on my goals and having patience, and remind myself that even though the improvement has been slow, it IS there, and I'll get back to getting out more in time. I journal my frustrations and ask friends/family for help and visits to cheer me up and help me feel involved in things outside. Sometimes I draw where I'd like to be instead if I can't go. I'm not housebound like I was last year, but I will always remember it.

    Don't forget to congratulate yourself on how well you're doing - it's hard what we go through, and I think it's important to buoy ourselves up. We've earned it! So - Way to go, hang in there, you're doing great!!! Sending lots of cheers and encouragement!!

    Take care - Jane
  6. lurkernomore

    lurkernomore New Member

    I so identify with what you have written. There have been many days when I have awakened and thought "today is the day I will leave this house." And then the IBS comes to call or I take a shower and shampoo my hair and nothing is left of me to take out there.

    I went through my "mourning period" and all the steps which have been written about. I sat here and tried willing my phone to ring or a friend to come by to see me. It didn't happen. I felt the world had given up on me, but in reality, everyone had come to the conclusion that I was too ill to visit or call and thought they were doing me a favor by leaving me alone. And then some, truthfully, just gave up on me. We all know how that goes.

    So I sort of stumbled upon my own technique for dealing with the solitude and allowed myself to get a little wacky with my sense of humor. I entertain myself with funny movies, imspirational music, anything neccesary to put a smile on my face.

    I also picked up on an old love of mine and that is writing. I use to write short stories all the time but had given that up because I got discouraged by all the rejection notices. Then I began writing stories for myself. I wrote about my family and the funny things they did and submitted one to a local magazine and it was picked up and I wound up doing a monthly article.

    The magazine eventually shut down but I have continued to write. I have picked up writing on a book I had begun a couple of years ago and am now doing some research in order to get the facts as accurate as possible.

    Once again, this too may never be published and now that is okay with me. It is the pure satisfaction of knowing that I am, once again, doing something and accomplishing something and it feels great! And ideas are now forming for other books, so we just never know what we have pushed down inside ourselves or what possibilities lurk unless we tap into them, do we?

  7. bossco

    bossco New Member

    I'm 10 years now into this life of being housebound. It is a growing experience of one's spirit to find a peace amongst this. I have found a new faith thru reading and watching faith based t.v. that has helped me with perspective of what I am now as a ill person. I sit outside when able, I sew when able, yard work when able. I think its important to keep a variety of activities however sedate they are on hand, to keep ones mind from going mad. The battle is never ending, and many can't understand this life we are forced to live. Finding peace with a very little life is key, its takes work and determination...good luck
  8. lovethesun

    lovethesun New Member

    my husband gets me out on the days that he's off though.Linda
  9. jenn5

    jenn5 New Member

    YES YES YES!! I wish I could willpower my way out, but then I shift my weight in bed to get out, and it all comes back to me.
  10. ilovecats94

    ilovecats94 New Member

    But it doesn't really bother me very much. I do plan on going out when the weather gets better to see what I can do in the yard. I keep saying that, but I never do much.

    I just can't handle the fatigue I have that is always there and just never seems to get better. I have a double whammy from FMS and diabetes, so mine is really bad.

    I do have plans to get out on the weekends with hubby to see what I can do in the yard. I have a tendency to be on the computer too much during the day, though.

    Hugs,
    Faye

  11. kholmes

    kholmes New Member

    It's an old John Travolta movie, circa 1974, based on a real life person who was essentially born without an immune system. I saw the movie as a kid and rented it on Netflix a couple of weeks ago. The Seinfeld "Bubble Boy" and subsequent movie took off on this theme.

    Sadly, the real life bubble boy (David Vetter, I think his name was) died at age 13, when they attempted a bone marrow transplant from his sister. She had some kind of virus in her bone marrow, unbeknownst to the doctors. They had to remove David from his bubble.

    In the movie, John Travolta attends school and his high school graduation, wearing a suit designed by NASA, that keeps all germs out. The film ends when he steps out of the bubble, and goes off riding on a horse with the girl that he has known since he was a child, with a cheesy Paul Williams song on the soundtrack. It's left ambiguous whether this kills him or if he has built up enough immunities to withstand the real world.

    Although I am considerably more free, I feel like the BITPB (boy in the plastic bubble) sometimes. I do everything I possibly can to not go stir-crazy, and I am blessed in being able to get out on weekends or even during the week, to take the dog for a short ride around the neighborhood.

    I like to read or watch narratives about people whose lives have been more restricted than my own: Shackleton and his antarctic explorers, the Man in the Iron Mask, The Bubble Boy, etc... Somehow, they make me realize that even through this crummy entrapment, life could be worse, and that the human spirit can handle remarkable restrictions on our freedom.

    A while back, I posted a message about ten things I do to make a bed-ridden life more bearable. But limitations on our mobility are an enormous challenge, especially if we've already tasted a life of vigor, the outdoors, and freedom. As wondrous as my hiking and mountain climbing was, I still see our time on earth as a kind of vestibule to Heaven, where we will be utterly and completely free.

    Kholmes
  12. Strawberry94

    Strawberry94 New Member

    I am housebound from vertigo/nausea, extreme fatigue. I think if I had more energy I would begin to get more stir crazy, but as it is I am just grateful to be able to save what energy I have for what is most important in my life, my time with my spouse.

    I found that when I was in the in between stages, back in the late 1990s that getting exhausted when going out and having to limit that time was more frustrating then than not being able to go out is now. My intellectual freedom is now limited by the brainfog and fatigue and that is the most of all hardest to be able to take.

    Now not being able to do a lot of intellectual or creative work due to brainfog is the most furstrating aspect to me.

    That is right next to the frustration of not being able to express my thoughts as well as I want, not being able to be the housekeeper and cook that I want to be. Then again cooking is part of being creative. I am also very frustrated about not being able to garden at this time.

    I watch shows like Ina Gaten and see her wonderful herb and flower garden and wish I could keep a garden and kitchen like that. I am not bored watching her show because frankly it is entertaining and I am extending the limits of my energy doing so...but oh how frustrated I am that I cannot act on what I desire to do, in the way I want to do it.

    I have in-laws who always exclaim "Don't you get BORED? I would be so BORED."

    Well, I guess if I had more physical energy I would be bored but boredom is not really the issue since it takes very little to provide enough entertainment to devert me.

    It is about surviving, budgeting energy and trying to hang on to the quality of life I have now.
  13. claudiaw

    claudiaw New Member

    YES!

    Claudia
  14. Strawberry94

    Strawberry94 New Member

    "What can I tell you? We need a life and must overcome the housebound problem.

    Where there is will,there is a way.

    Before you say you can't or wont do this, just try one time."
    -------------------------------------------------------


    I just have to say, as gently as I possibly can, what an asumption to think that people here who say they are housebound do not *try* to improve their situations by going out. You don't know what I try and fail at, do you?

    I know you mean well, but you don't know everyone's situation.


    This is the assumption made by other people in my offline life that hurts and stings the most. That somehow becausse they only see the results of my situation that I do not or will not *try* to do better.


    The asumption that my life is as it is right now because I do not try. I try to improve with everyday. Yes, it is frustrating.


    You don't know the actual struggles of my daily life or what I have to do to keep the things that are most important to me, just as I do not know all of your details.



    First off I cannot drive and when I am a passenger in a car, I am sick the whole trip. When I get to a destination, I am totally, utterly exhausted and confused with the vertigo. I cannot eat a "complete and balanced meal" if I am to ride back in a car. Crackers and juice is about it with Dramanine.



    I do what I can within my limits and actually now that I have limited my activity instead of the push and crash that I had before, I have more nausea/vertigo free days, less muscle pain.


    I do not have to go out to a public place to keep my current physical conditioning. I do brush my hair and put on my make up on the days when I am able to be up and around. I try to alwyas dress nicely, probnably nicer than many other people do because it makes me feel better about myself. Yeah, if my head is throbbing and am sick to my stomach, sorry no glitz on those days.


    If I go out, it takes days to recover my energy. That is HARD on my particular situation and my marriage. You have no idea how hard it has been for me to juggle this illness with my marriage.



    You do not know what is most importnat to me in my life right now. I need to be a good companion to my husband, his life is very stessful now, I need to be as well rested as I can be.... I need to be able, for my own sanity to be able to read and think...to feel alive. I do sit outdoors on nice days, I do open my windows.


    I am very happy for you that you are able to do this thing that brings you improvement and more happiness. It is wonderful to read about someone overcoming their situation and getting better.

    I read from the back posts that you recieved pain meds that broke your cycle of pain and you said that was what got you moving again.

    That is is wonderful for you and I am truly glad for you, BUT do not presume to come here in this vent thread to tell me that I can just pick up and move on like you when my situation is different than yours and I have not yet found a good combination of meds to break my particular cycle.


    That does not mean that I do not try. How dare you come now and say "we need a life and must overcome the *housebound problem*." You overcame your housebound situation through finding the right combination of medications, do not assume that gives you the right to say to others "where there is a will there is a way" as if we are housebound simply due to a weak will.



    How dare anyone tell me I need to get a life. I HAVE a life that am I desperately trying to hang on to, that is what you don't get. I can't be a total mental zombie from some outting twice a week that you think in your wisdom that because it is good for you that it is what I or anyone else *needs*, what I most need in my life is to be as open to being a good companion and doing as much as I can around here as possible.

    I can't burn up my precious amount of energy on going out and having motion sickness and then crashing for two or three days at least, each time I have an outting. I have to hang on to what I still have. That is my situation.



    I do not expect to get a lecture when I am venting about my frustrations from someone who does not know my situation. I get enough of that in all other places.



    I know I have not kept this as gentle as I intended but how dare someone presume to tell me that there is no will or way here when you don't know my life.
    [This Message was Edited on 05/08/2006]
  15. PVLady

    PVLady New Member

    I was only suggesting what helped me.
    You put your own interpretation on my post
    Naturally it would not apply to everyone and if that was the case for you why didn't you just ignore it?

    So sorry you have been housebound for ten years or more (per your bio) ....that must be very difficult.



    [This Message was Edited on 05/08/2006]
  16. maps

    maps New Member

    I rarely post here as it takes a lot of effort I do not have. I have CFS and a microplama infection, candida and constant stomach problems.

    I am writing this because I had the same thoughts and feelings as you.

    I have been housebound for two years. I have been on effexor among many other things which actually stopped my desire for anything better. I was hospitalized three years ago for major depression and abuse of my medication that is when I was put on effexor.

    I decided six months ago to cut back the effexor from 150 to 75 as I felt I was ready to deal a little more with my life.

    I have been on Antibiotics for three years. Three months
    months ago I started getting pains under my ribs and feeling bloated and nausie my doctor suggested that I start eliminating the supplements I have been taking.

    I did that and last week I stopped the antibiotics and the acidophilus.

    I suddenly feel less sick and the fog and fatigue do not start until later in the day. I still having the same problem with my stomach.

    The reason I am writing this is because suddenly two weeks ago I was able to go out to my garden and weed and dig. I have not been out there for two years and I hated looking at it.

    My point is you never know for sure what tomorrow will bring I certainly could never have percieved this happening three months ago. We don't know with these illnesses when we will stumble upon something that helps so please don't give up.

    I am sure I will get some kind of reaction to all of this but it has been a wonderful two weeks.

    Maps
  17. Roseblossom

    Roseblossom Member

    I'm sorry you're feeling so stuck. Sunlight & fresh air is a necessity.

    Is there a way to get more of an open feeling to your home? I have a big comfy armchair by my biggest window which I keep wide open on fresh mild days.

    I sit there to read or just look out at waving leaves and birds. My sister put a bird feeder & a water bath for the birds just outside.

    Could someone take you to the park? Is there a butterfly pavillion or zoological gardens you could visit on one of your better days? They are all wheelchair accessible now.

    p.s. You have an excellent way with words, Shannon - I hope you keep a journal and/or write stories :)

    Best,

    Roseblossom
  18. PVLady

    PVLady New Member

    Actually my whole wacky routine saved my life. I was so sick, it is still traumatic to recall how bad it was.
    I am now going to see a therapist and hopefully get past many lingering fears I have of ever getting that sick again.
    I am glad you have a wheelchair. Thank God you were able to find a way out.

    My situation had gone on for several years and I feel mentally traumatized over it, (a lot of anxiety now).

    I am lucky I was able to keep my business going during the years I was so sick, thanks to computers, etc. (I also have the best employees in the world)...

    I wish you the best...

    [This Message was Edited on 05/08/2006]
  19. Strawberry94

    Strawberry94 New Member

    I am sorry that I snapped, but it was the wording used, not the overall message. Trigger words.

    "Don't tell me you can't do it"

    "Where there is a will there is a way."

    These are phrases uttered often enough by others and it is the assupmption that I have not tried, have no will to try or do not continue to try that really gets me about others.

    I am really happy for you that you can go out like that and that you have some regular places to go when you do. It sounds like it means so much to you and is healing.

    I think that is something important that people tend to lose when they get sick is the regular routine, funny how we usually create a routine in other ways. I have an online rountine that I go through daily, checking into all my spots. I laugh at myself all the time about how dogmatic and serious I can be about it. I have a regular day that I do my shopping online too.

    Again, I am sorry that I snapped. I have been in boards before where those who were less sick or getting better became judgemental of those who were not. I probably developed too brittle an attitude about it.

    I have only been housebound since I had to stop working in the fall of 1999. I worked right up until I just could not get around that well, I gave up everything outside before I gave up working.



    [This Message was Edited on 05/09/2006]
  20. Strawberry94

    Strawberry94 New Member

    Shannon, I was thinking about your post and nature and one thing I do is to try and bring the colors of nature indoors, like rich dark green and all shades of blue. Nature pictures. Peaceful music. Nature scents like real esstienal oil pine, sage and lavendar. As much as I can I open the windows, even if I need a sweater and it can only be a little while.

    I get nature pictures whenever I can. They don't have to be framed for me, I just put them where I can see them.

    I also meditate. I do relase work on my emotions.

    Like I said before, as much as I am able to, I try to be free in my thinking.

    Shannon, so many people have physical freedom and they don't even use it to their advantage, their minds are chained to ideas that they don't even realize are their own. I use this time to do what I can to free my mind and to explore ideas as much as I can. It is another way of being free and it is a very rare kind of freedom.

    So many people say they "do my own thing." But do they really? Usually "my own thing" is something they saw in a magazine or commerical. They are clone drones and don't realize it, egomanics tied to rigid ideas sold to them as packaged rebellion against a status quo they are slavishing following. They use catch phrases they hear in movies, tv and commericals to take the place of their own thoughts.

    Freedom of the mind is a rare and special freedom and it is open to all, no matter what their physical condition. It might take those of us with brainfog a little longer to work concepts out in the mind and a lot more time to put them into proper expression, but in the end our quiet times leave us a lot more silence in which to do so than the average "free" person out there allows themselves in the average day.