Housebound or Bedridden

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Mar 29, 2009.

  1. greatgran

    greatgran Member

    Just wondering how many of you are housebound or bedridden. I know the past couple of years I have gotten so much worse. I try to go and do when I can but it is becomming almost impossible for me to do, even with pacing. My housework is nothing like I use to do, my appearance is nothing like me, I can no longer wear anything that isn't comfortable and never feel like going to get my hair, nails etc. done.. I do shower and keep myself clean that is about it.

    If it was just me I don't think I would get so depressed but my family needs me to be up doing and going and not lying in bed or on the sofa most of the time. I do try to put on an act and do the best I can but am getting tired of that. My husband is having to do most of the grocery
    shopping and makes me feel so guilty and worthless.

    After 7 years I just can't come to terms with this darn dd. I use to have a few good days, but now I don't have any some are better than others and can never plan anything.

    I just don't know what to do with me anymore.. Guess I am venting but can anyone relate and if so what to do.. One minute I may feel like I can do the next I feel like I am dying. More flu symptoms and aches then of course the depression.

    Thanks and God bless,
  2. fifthofanickel

    fifthofanickel New Member

    every year..I think it's the aging thing, but mostly the fm/cfs....I am mostly housebound now also. I get out to do the monthly grocery shopping & make church when I can, & bible study, but that's about it.

    I've been down w/abdominal pain most of the winter,so spent my time in the recliner or bed. What a life...I'm sure the abd. pain is from the fibro..I had cat scans done, & other tests that were all negative.

    My hubby too, does most of the housework & cooking. I can manage the laundry w/his help, but then am exhausted the rest of the day..I constantly have pain somewhere in my body...I can't take any meds to help, as I've tried, & due to my Gerd & colitis I can't tolerate them.

    I guess my approach is; that this is my "new normal" & there isn't any other choice for me. I hate it, but try to kick in my coping mechanisms by doing the things I can do at home; ie; read, crochet, watch the boob tube, pray, read the bible, etc. And of course these are all done in bits & pieces.

    I do feel down at times, but try to count the blessings I do have, & that seems to help. Acceptance is the big thing, I think, in dealing w/all of this. We all go thru a grieving period ie; as in a death & build from there..I know it's no ez task.

    I'm so sorry you are having such a difficult time. I hope some of what I said helps...I've read some books on coping w/chronic diseases & that seemed to help also...If you are a christian, there are many books out there that will definately help you...

    Take care, all good blessings coming your way..Hope you find something that will help.
  3. greatgran

    greatgran Member

    First of all your granddaughter's are precious and their hats darling. How old are your babies, they look about the same age as my greatgrans who are 7 and 4. Hey, we are the same age where does time go. I did try keeping my precious greatgrans but just couldn't but when they were here it did help mentally .My daughter has custody of them and she is a widow and having a struggle with her other children, that are grown and should be helping her , oh this is another story.

    I do have so much to be thankful for and try not to forget it but sometimes things get in my way. I can't even make it to church, sometimes I try to go but do try to do the bulletins once a week, that helps just to feel like I am doing something.

    I still doubt my Dx so often as the doc I see isn't to informed he did send me to a rheumy to rule out lupus but the rheumy said fm and told me to go home and take tylenol . I didn't like him at all. Another internest I saw said cfs so not sure what I have.

    Today my muscles feel so weak. I want to do but know if I do how I will be.

    Thank you so much for your input it does help so much to talk to someone that can relate. Oh, I have made an appointment with a therapist so hope this might help.

    God Bless and Thank you,
  4. greatgran

    greatgran Member

    Oh, I am so sorry that you are having such a time and so young. At your young age please don't give up there is hope for you. Know what you mean about hospitals, and the fear of what is going on with your body. Are you treating your depression now and if so is it helping.

    You will be in my prayers, just reading your post makes me feel bad for even venting.

    I wish I could say or do something to help you.

    Thanks and God Bless,
  5. fifthofanickel

    fifthofanickel New Member

    I will say a prayer that the therapist can give some kind of help. Have you ever tried a naturopathic doc.? Sometimes things more of a natrual nature can help. I found reflexology to help some along w/a monthly massage & chriopractic care. Of course the three are just a temporary fix, but at least I can feel decent for a couple of weeks. I don't run any races, but my pain/achiness & "belly" feel somewhat better for that time.

    My grandgirls are 7 & 3 1/2..., so are close in age to yours. I only see them every 2or 3 mos. as they live about an 1 1/2 away..I'm finding I can't take the trip much anymore...In fact any trips over 30min. leave me in pain/exhaustion for about 3days. But I do enjoy making things for them, sending them cards & talk to them on the phone once in awhile. Gk's are sooooooo special aren't they..At least when I look at their pics, it brings a smile to my face...

    Blessings & do let me know how it goes for you w/the therapist.
  6. fifthofanickel

    fifthofanickel New Member

    I can relate to watching others go on thier merry way doing "normal" activities & have felt the injustice of it all. This is such a process...Like I mentioned to gg, going thru a grieving process for all of this, then the acceptance will kick in. Till then it's an uphill battle.

    You are so young to be going thru all of this, & my heart goes out to you. This is your time of life to be having fun & finding your place in the world instead of this.

    That said, I don't know if you have insurance or not, but if you do, finding a good rheumatologist at this point would be a good thing. There are meds out there to experiment with..Meaning, to find the ones that are right for you.

    Panic attacks are part of the package when fearful for your life. I had them in the beginning of this also. It wears off when acceptance kicks in. (It did for me anyway)

    If you also could find a doc that deals w/Lymes/fms/cfs, that would put you in a good position to rule out a few things. I know it gets tedious going from doc to doc, but that's the only way to find a good one. I think I went thru about 6 of them b4 finding "my guy"....I know others have gone thru a lot more than that to find someone. Also the suggestions I made to greatgran may help also...

    If you don't have insurance, apply for disability & medicaid...Then you will be able to find some help....You are in a bad place right now w/all of this, having your father do things for you, & it affects your self esteem, I'm sure. And you are so young to feel this way. Me, I'm older, & have lived most of my life now. I'm still on a learning curve w/this dd, but feel hopeful I'll be able to handle what comes along.

    Keep strong, take one thing at a time, & you are probably angry right now, & maybe that will spur you on to fight for yourself.

    If I come across sounding like a "mom" I am, & that's how I have talked to my son, when he's been in a crisisl...And believe it or not, he's thanked me for it... :eek:)

    God loves you;

  7. greatgran

    greatgran Member

    You sound so much like me as far as trips go, mine are limited to around 30 minutes but my greatgrans are only a couple miles away so I see them almost daily. Sometimes that is to much but they grow up so fast.

    I did see a naturopathic/ chriopracitc doc when I was trying to get a Dx in fact I just emailed him last night, to see is they accept medicare. He was very good and seemed to know more about fm/cfs than any docs I have been to and the test he did were excellent. That was about 7 years ago. If he accepts medicare than I do plan to make an appointment and see him again. The only thing he had me on so many supplements etc. that I became so sick, I think he tried to many to soon. I had to pay out of pocket so it became so expensive.

    My appointment with the therapist is this Sat. so we shall see how it goes.

    Temporaty fixes are better than none so if you feel decent for a couple of weeks then go for it. I have never had a massage but would love to if they would let me sit up I get dizzy if I lie on my back and my tummy is so big I can't lie on it.

    I will pray that you have a good week,
  8. fifthofanickel

    fifthofanickel New Member

    Just a quick note; They do chair massages..It's a special type chair you sit on kind of backwards, then the back tilts down to about a 45degree angle, & your face fits in a doughnut thingy...So you are half sitting so to speak. Might be worth a try..

    Thanx for your well wishes...
  9. stschn

    stschn New Member

    Even if I hate some of it-The Valcyte helped my cognitive improvement so I can live in a good book on better days I'm on Acyclovir now-The work done by the Pacific Fatigue Lab the link was reported here by mezombi a couples of weeks ago has helped me so that I am up almost all days now. Not in bed but in a wheel chair power chair a stair chair and a shower chair not where I want to be but a heck of a lot better that being in bed and I have been- at one time for nearly 3 1/2 years. A wonderful husband who also does every think that I did in the past except that on what passes as a good day I can cook one meal-from the power chair-for lunch but then I'm shot for the day. A couple of wonderful Doctors Montoya at Stanford and Wilson my pcp who will listen to the research I've done and help me with some of the problems that an infectious desease doctor doesn't know about. i.e. sleep- depression. I've had this DD for 21years and I am pleased to see that somethings are finally happening. Remember the first CFS conference in 1980 something had something like 83 shrinks and 3 doctors.
  10. TeaBisqit

    TeaBisqit Member

    I rarely go out. If I didn't have to get food or do an odd errand or the doc, I'd never leave the house again. I'm just not well enough. It totally sux. You aren't alone, there's alot of us out there. Hugz.
  11. bobbycat

    bobbycat New Member

    Me too. I went out to my grandsons birthday and that is the first time I have left the house other to go to the doctors. I am hoping in the summer I will at least go and lay in lounge chair for awhile.
  12. tut90

    tut90 Member

    I'm not able to do too much lately, been in a flare for more than a week now. When I do feel a bit better and go out, I definitely pay for it for a few days, it seems we all tend to over do it when we are feeling better. My husband and daughter do the food shopping. My husband does most of the house cleaning, and my daughter comes over and cooks for us. I try to do some laundry when I'm not in too much pain. My dear husband started a vegetable garden to see if he could get me to go outside every day, it has worked I do go outside and enjoy seeing everything growing.

    Wishing everyone a blessed day.

  13. gomma1

    gomma1 New Member

    I'm glad this topic was posted because it's been on my mind a lot. I'm 19 years with CFIDS/MCS and now 62 years old. The past few years I've been getting worse and worse. This winter I've canceled more pr. appointments than ever, and haven't been able to get to the grocery store much. I'm alone and have no help, so it's rough. Just have to put up with the dirty laundry, poor hygiene, backed-up mail, dirty house, and make do with what's in the fridge and cupboard, some of which is pretty old. Can't read much so I watch a lot of TV. Thank heaven for DVR's, BUT that isn't what I would be doing if I could do other things. My frustration is not even having the ability to do anything creative, even in a small way. I used to crochet in the winter, but couldn't even do that this year. I have grandchildren, but rarely get to see them. I'm very isolated, which I know is not good for one's health, but I don't have the ability to get out and make friends. I try to keep a spiritual perspective, but it's difficult.

    What I know about me is that in a healthy state, I'm an intelligent person, interested in new experiences--people, places and activities. I think the hardest thing about this illness is not being able to EXPRESS who I really am. Certainly depression sets in, some of it situational and some of it caused by the illness itself. A lot of the time I'm just bored. Bored with the same four walls, the same backed up basic tasks (dishes and cooking, anyone?). To me, CFIDS is a job I hate but can't quit, and never get a vacation from.

    It takes great courage to live this life--for all of us, and I'm grateful (and at the same time sad) that you all understand.

    Peace and blessings,

  14. Marti1476

    Marti1476 New Member

    Both here. I was born with JRA (juvenile rheumatoid arthritis) and in 89 osteoporosis landed me permanently in a wheelchair. It wasn't those two that brought about being homebound but the FMS. I am never not in pain and my meds don't really help. Wearing clothing can be unbearable at times, bras are the worst because my ribs ache so much.

    For years I put up a front, not letting anyone know how much I hurt. There came a point in time that I couldn't hide it any longer. And that's when the accusations of faking it started. It doesn't pay to hide how bad we hurt, it is reality after all.

    My hubby does everything too and I feel the same guilty and worthless too. I try to make sure I thank him (sometimes too much & he gets a little irritated and says "it's my job, stop it). I never want to chance not thanking him.

    I understand all too well the feel like I'm dying. I am nauseous, exhausted, headachy, and hurting daily. I'd like to feel good for a few hours each day or one bloody day a week!

    Hope we all feel better soon!