I Don't Know What To Do With Me

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Jan 2, 2010.

  1. greatgran

    greatgran Member

    Seems the past three years this disease has gotten so much worse till I am at the point of becoming housebound and mostly bedridden. I was so active before , as with each of us. Now I can't work, solicialize, well you get the picture.

    I look around the house and see so much I could be doing but can't and it bothers me. To miss out on going with husband and family gets to me. In other words what do I do with me. There is just so much TV, reading, being on the computer that one can do .

    I awake of the morning searching for a purpose for me and can't find one that I can do.

    Its getting really depressing wondering how to live, and how to find some meaning in my life.

    My husband is a good man but after 8 years he doesn't get it and never will, heck I don't get it and have it..

    I have even had to cancel doctors and dentist appointments cause I just don't feel up to going. I am becoming a hermit and it scares the heck out of me. My friends have moved on never call or come around. There is no local support group in the area .

    Oh, well just feeling down today and wondering how to keep on goingand what to do with myself.

    Thanks and God Bless
  2. ladybugmandy

    ladybugmandy Member

    hi gg....i am so sorry you are going through this. i am in the same boat. i guess i have all my hopes pinned on XMRV now. if that doesn't pan out, i don't know what i will do.

    are you getting the XMRV test?

  3. greatgran

    greatgran Member

    Thanks for your reply. I am glad you have hopes on XMRV and hope it pans out for you. I am not sure how to get the XMRV test but if possible I will.

    My drawback to the test is I feel sure we will all test positive then what? As yet there is no known treatment and I feel if we have any bacterial or viral infection we will test postive. I feel mine is bacterial and I can't take antibiotics, or at least haven't found one yet.

    The doc I had has moved and I haven't found one yet that is willing to work with me, still searching. We have so few doctors here and if you go with anything more than a cold they want to refer you out of town and I am not up to the trips.

    Now, don't let my opinion get you down, guess I am just afraid to get my hopes up and at my age (67) seems theres not much hope left in me.

    God Bless,

  4. TeaBisqit

    TeaBisqit Member

    I don't do much. I'm in a terrible never ending merrygoround from this disease. I wait to get enough strength to do the small things in life people have to do. Once I have grocery shopped or done the laundry or whatever thing it was, then I spend most of the week recovering from doing that. Then I have to do whatever else it is again, then spend the rest of the week resting from that. And it doesn't end. And when I have an inspection coming up like I do this week, I have clean, so I'm forced to expend more energy than I have, then I will spend weeks recovering from that. There is no life from this disease.

    I don't have any kind of life from this disease at all. I have one friend who does understand, sort of, her daughter has it. She takes me out about once a month, but I'm usually deathly ill when we are out and then I have to rest up from that. That once a month is my entire social life.

    Can't work, can't join anything. Would love to do stuff, can't. No one around me ever understands why I can't join a church, why i can't go to bible study, why I can't do anything. They love to make comments like, "How do you stay inside everyday, I'd go crazy." "You need to get out more." Well, their comments drive me crazy. They ought to try having this and see, we have no choice.

    I don't know what I'm meant to do at this point. Even if they got us an effective treatment, I can't go back to school because my medical records are "lost". Without the vaccination records, I can't take classes or get a passport and I will never allow them to give me any more shots. No one will ever hire me with no work record in twenty years and no guarantee I won't relapse on them. I feel very screwed.

    I really don't know why God wants me to stay at this point. I'm not even allowed to make my files anymore. Every time I want to, something major happens, like I'm not meant to do it. So, I haven't been. I've been spending my time watching movies, and doing the rest up merrygoround. Zero life. I think alot of us are in the same boat with this disease.
  5. greatgran

    greatgran Member

    I am so sorry you have to live this way. I have no answers but sure can relate.

    If it wasn't for my sinus issues I would be more functional. At least I think its sinus but then it could just be part of my crashes. I have even thought of lyme this darn crazy off balance feeling in my head.

    Have been in bed all week with what I think is a sinus plus crash . I have been eating garlic as much as I can stand because of the antibiotic issues.

    Its below zero here and I have had to send my husband out to get my greatgran an birthday present, as today is her birthday . He goes but its like when he has to to the things I can't he gets mad.

    Oh, well I wish I had an answer for us but all I can say is I sure know how you feel. There must be some purpose for us cause we are still here but finding it..

    Thanks again for your reply and God Bless,
  6. TeaBisqit

    TeaBisqit Member

    I'm having sinus problems, too. I steamed my sinuses last night with garlic and salt in boiling water. So now I smell like garlic today LOL. I might do it again tonight. I think it helped alittle. This weather makes sinus problems a million times worse. i really don't want to go on antibiotics. I tried recently with just Erythromycin and by the third day on it, I was vomiting and in so much physical pain all over that I had to stop taking it. I don't know what we're supposed to do when even antibiotics make us sick.

    Someone online said to try an herbal tincture called Friar's Balsam. You're supposed to put a few drops in boiling water and steam your sinuses and lungs with it. I'm thinking of getting it, one ounce of it isn't too expensive. I'd never heard of it before, but they said their grandparents used it and used to make them use it for sinus problems and it cleared it right up. Might be worth a try.
  7. mbofov

    mbofov Active Member

    I've been thinking about you and your chronic sinus infections and bet your immune system is weakened for whatever reason, as mine has been. Here are some things that have helped me, as I am sick a lot (though not as sick as you) and relapse very frequently:

    Thymex, by Standard Process - it helps the thymus gland which is essential for immune functioning - you can buy it on-line or from many chiropractors and a few health food stores

    kefir I make myself from goat's milk (I've done other posts on this) - I really noticed after drinking it for about 2 months or so that I was getting sick less, and getting well quicker. I don't recommend buying it from the store because of added sugar, and I think goat's milk is better than cow. I think cow's milk could just cause more congestion.

    Vitamin D3 - I recently upped my daily dose from 2,000 IU to 4,000 IU on my doctor's recommendation. This too is helping. Elisa posted a little while ago that her constant fever for 2-1/2 years subsided after she started taking vitamin D3 (and I think something else, cannot remember what)

    I just started low-dose naltrexone (night before last) and it's too soon to tell on this. I took 1 mg. at 9:30 p.m. and ended up with severe insomnia after 1:00 a.m., a common side effect, I may have to switch to daily dosing. Anyways, I was very sleep-deprived yesterday but felt better than I had all week, wasn't as sick. But I skipped last night as I had to catch up on my sleep. You can read about it at lowdosenaltrexone.org

    And finally - here's something that I've read about, haven't tried (although Forebearance has) =- lauricidin or monoloaurin. Lauricidin is a brand name form of monolaurin. It's derived from coconut oil, is anti-viral and anti-bacterial. I just read a little about it helping with sinus infections and someone is using it for lyme as well. I used coconut oil a few years ago for a yeast infection and it was very effective. Since you can't take antibiotics, you might give this a try, I think it's much better for you than antibiotics anyways. Some people posted that it helped them with FM too.

    Take care -


  8. greatgran

    greatgran Member

    I have Momolaurin have forgotten about it. It is out dated wonder if that matters. I have upped my vit. D also will check on the others you suggested.

    Thanks for all your info.

    Tea, I remember you with the sinus problems.. Mine is so weird, more like my head is full, spinning and no cold symptoms gee its so hard to describe. Yes, its terrible when we can't take what might help us. I am becoming med-phobic..

    I am making my family miserable!! that upsets me. I have been in bed all week and they are insisting I go to my greatgrans birthday party and I want to so bad but it is so cold here if I get out the the sinuses will be even worse not to mention the crash.

    God Bless,

  9. pumkinhead

    pumkinhead New Member

    Your words could be mine. I have the same issue's & tissues.
  10. Janalynn

    Janalynn New Member

    I'm sorry you're feeling so awful, both physically and emotionally.

    I think part of our problem - or I should only speak for myself I guess, is that the guilt we feel over all we can't do, no matter how hard we try not to, just adds to our stress and sadness.

    Honestly, as much as my physical body is killing me, this has been the biggest emotional challenge I've been through.

    I was asked recently what I do for fun. Couldn't think of anything - yet, part of me is content being home (I still work outside the home, so I love coming home). I enjoy very simple things - very! Are there some simple things you could find?

    When I have gone out, which is RARE, I do end up having a good time. Now, I have not even grocery shopped in almost 2 years. I literally go to work and come straight home. My sisters and I get together for our bdays for breakfast. That's a nice getaway. I try to remind myself that I need to do that more. Not all day adventures, just an hour here and there. Nothing physical either.

    I'm pretty much a hermit as well. First thing the Pain Mgmt Dr. said to me was "Bet you stick close to home." Uh yeah.

    I keep thinking that at least I have this and my kids don't, the other people I care about don't. Somehow I guess I'm the one who will be able to handle this. HA. I've always been the one to be handed to tougher things. It's made me stronger that's for sure. (although I feel like a weakling sometimes)

    It's a vicious cycle - we dont have the motivation to do things, but when we don't we feel worse. So if you have a relatively good moment, can you think of a small thing you could do that you enjoy? I don't know if you cook anymore, but maybe surprise him with a nice simple dinner for your husband and you to enjoy? (crockpot for ease?) Is there anything you've wanted to do? Knit, crochet? something you could do from your couch? Just get your mind off your illness.

    Have you been to an ENT? Would they be the ones who specialize in Sinus issues?
  11. quanked

    quanked Member

    greatgran have you tried washing your sinuses out with salt water? I use to do this when I had chronic sinuse problems in my 30's and 40's. I forgot the ratio of water to salt but I usually tried to make the solution as strong as I could. It would burn but it also helped.

    I was not aware of the adulterated salt but now I would try to find an organic salt source. You would need a syringe (a little one like used for cleaning an infants nostrils) and water. I would hold (while over a sink) one nostril shut and shoot up the salt water up the other nostril while hold my mouth open. If you get a strong enough stream going it should go up the nostril and then back down your throat and out of your mouth then into the sink. The more pain I was in the more salt water I would run through both sides.

    I use to use lots of antibiotics and fiorinal for pain with my sinus infections. But the more I read about the dangers of over using antibiotics the more I used salt water.

    I noticed a couple of years ago that saline water is now being sold in stores--lol. It is not cheap. There is a word to describe this process (of the medical community giving it approval) but damned if I can think of what it is.
  12. CanBrit

    CanBrit Member

    Lord knows, I know how you feel. I too have gotten much worse over the past 6 years. Becoming much more of a recluse, housework is getting too much for me. I miss my job, my activities, my travel.
    We have to pray that things will get better. I'm trying to do a modified aquafit program twice a week, but even once knocks me out for 4 days and gives me so much pain. I'm trying to stick with it in the hopes that eventually, it will make me feel better. There are others there like me, so thats a bit of a comfort.

    You and I will manage somehow. You're not alone.

    Love to you
  13. jole

    jole Member

    Watching our lives slip away is the absolute worst! The one consolation I've had is loving having my kids/families come home for a weekend visit. But I've found I can no longer cope with that, and don't know how to tell them it's simply too much. Even with them doing most of the cooking, bringing up the bedding and starting the washer before they leave, etc.

    Just the stress of it puts me into a horrible flare that lasts for weeks...I can't sleep, the pain is so bad the meds won't touch it, and the mind is totally gone. The only way I can cope any more is to basically do nothing but take care of myself, and some days don't even get a shower.

    My hubby tries to understand, but he doesn't. He sees me doing more when the kids are here, then when they leave I hit the bed. To him, it means I don't want to do things for him....just for others! That upsets me so bad, and there is no way to explain to him how much I push to get through two days when they're here (still having to take a nap each day), and no way can I do that every day.

    Anyway, I understand your frustration and pain. I'm tired of pushing to please others when I know the pain I'll suffer after. I'm tired of being in my home and leaving only for doc appointments twice a month, and not being able to drive anymore. The feeling of total worthlessness is some days unbearable.

    Read the thread by pink...quanked had a great reply in there, I think. Just know that I'm thinking about you and wish you the very best. Know that many on this board care about you. I think that fact is what keeps most of us going..........hugs.......Jole
  14. MsE

    MsE New Member

    Just thought of something. Have you tried lavender oil? It is inexpensive, comes in tiny little tincture bottles. Uncap the bottle and sniff the fragrance. It's strong! Sometimes it helps a lot. A friend from Lebanon told me about this many years ago. I had completely forgotten about this old remedy until today. Why not give it a try? Hugs, MsE
  15. greatgran

    greatgran Member

    Thanks to each of you for your replies. It helps so much to come here. I would reply to each but just haven't felt up to it.

    I am feeling somewhat better but far from what I would like.

    For my sinuses I have tried the steam, neti-pot, garlic etc. but its still with me. I did order a kit from igenex labs today and going to see if I can find a doctor for testing for lyme and other bacterias, since I found out medicare will pay for it.

    Since my doc has moved and I am not able to go out of town I do hope I can find one that is willing to work with me. I also emailed a friend of mine who is a pharmicist to see if she might have an answer to what I might be able to take since I can't seem to tolerate antibiotics.

    Will update when I am feeling better .

    MsE, I haven't been able to get out to look for any lavender oil but will give it a try if I ever get out again.

    Thanks and God Bless,
  16. fight4acure

    fight4acure Member

    Are you good at writing? I need to get a letter started to fight to educate doctors, the news, and talk shows, and senators, etc. So far I have a rough draft. If I write up what I have on here, could you help me to edit it?

    I know how you feel. I'm struggling so much right now. Each day is a battle in the battlefield. I'm a POW (prisoner of war) in my own body. Just know that I'm with you here, and understand you and care for you! We will fight this battle!

    Fight :)