Anyone been housebound and too sick to make appointments?

Discussion in 'Fibromyalgia Main Forum' started by kholmes46, Jun 28, 2012.

  1. kholmes46

    kholmes46 Member

    I've been in a bad relapse, bedridden and housebound for several months. I'm unable to sit up in a waiting room, and I've lost my voice. Getting out doesn't just put me in a flare; it makes me worse. I feel like I'd need a gurney to go in anywhere. Any ideas here?
    Much thanks and love.
  2. MicheleK

    MicheleK Member

    Hi, I am so sorry to hear that you are in this very difficult state. I have been in the same state for the majority of the last few years. I went two years straight flat in bed unable to talk without relapsing or sit up etc. I totally can relate to what you are going through.

    May I assume that you have M.E or CFS?
    From your description of not being able to sit up in a waiting room, you may, like me have an orthostatic intolerance issue.
  3. zenouchy

    zenouchy Member

    It's been a long time since I've talked to you. Don't know if you remember me. :) I can answer "yes", there are certain doctor's tests and procedures my docs want me to get that I am unable to do because of different health issues. The tests and procedures can be exhausting, and you have to feel well enough to do them. The doctors appointments are sometimes draining too. I have to triage them and decide which are most important. What else can one do? Getting worse is not going to help.

    Wish I had a suggestion for you to make things immediately better. Please know I'm thinking and praying for your complete restoration to full health and well-being.

    Are you reading any good books these days? I remember the fun book club you used to have on the chit-chat board. I read a lot now and really enjoy it.

    Feel better and all the best,

  4. kholmes46

    kholmes46 Member

    I do have OI. I'm doing lots of salt, and am starting florinef soon. How do
    I'd you manage being flat on your back for two years? For me, it's tv, my kindle, iPod, naps, and lots of laying here, staring out the window. I am able to sit up for 10 minute meals. Trips to the bathroom at least give me a slight change of scenery. Have things improved at all for you? I do have CFS--or possibly some Lyme co-infection. Have you found anything truly helpful? And have you gotten your voice back?
  5. kholmes46

    kholmes46 Member

    I do have a wheelchair, thanks. I also have a power hair for getting around the house. Even with those, appointments are a big problem.
  6. kholmes46

    kholmes46 Member

    Of course I remember you. Big hugs to you, and thanks. Haven't found much good to read lately. You?

  7. kholmes46

    kholmes46 Member

    Big hugs to you, too. Getting too tired to type more. I'll try to post more often, here or on chat...
  8. MicheleK

    MicheleK Member

    Hi Ken,
    All I can say is I got use to the laying flat. Anytime I tried to sit up or stand up for more than a few minutes, a flood of awful symptoms would come, the suffering kind of symptoms. If I laid flat, I didn't feel well but I did not suffer from tons more symptoms.

    I have a laptop table that fits over my abdomen. I could prop myself with 2 pillows and manage to type, play games, watch tv on it and also make lots of new friends who were going through similar circumstances. In time I decided to get involved in helping other people through advocacy. Anything I can do on a computer, I do! Doing all these things made the time pass with a purpose.

    I tried the salt and florinef but it just didn't work for me. All I did was swell in my tissues instead of building up actual blood volume. So my doctor put me on saline IV's beginning with one liter once a week. Then when that helped but not quite enough, she put me on two liters a week.

    I did that for a year but I can't say I did it every single week. More like every other week. Then I talked to a couple of Dr. Bell's patient's in New York who had been on the IV's for 2 years and both of their bodies evidently got "retrained" and their OI issues went away! So I decided to get serious about having my IV's every week. The results were that within 4 months I was able to cut down to one a week. Now I am able to go 3 weeks without them and during those weeks I am able to be upright. So I do think my body is getting "retrained" to create the proper amount of blood volume.

    There is no study on this "retraining". But it is the result of the 2 friends I have and what I am beginning to see in myself. If I did not have the OI issues, I could lead some sort of life. Even if that meant only getting out once a week socially and puttering around in a garden or doing a hobby, it would be a life outside this disease.

    OI issues can come and go. I did not have OI all of the 20 years I have been ill. The first few years I had it bad. Then it went away for a number of years. When it reappearred, I beleive it was because I had been trying to live a life that did not acknowledge the illness, thinking I could positive think or work my way out of it. Biggest mistake of my life!!!

    I hope the salt and florinef will work for you. They definitely should be tried before you go to IV's. Also if you have Postural orthostatic tachycardia syndrome, they can address the rapid heart rate that happens upon standing with a heart medication. At the CFS meeting in Washington a few weeks ago in the backroom, the president of our support group talked to a few doctors who deal with OI issues in CFS and one of them is giving the worse of their patients pacemakers with excellent results. That was not presented officially and I know of no others who are doing this but I'm sure if enough patients do well, it will eventually be made public. Personally I'd rather do the IV's LOL

    I too like to read. I just read The Litagators by John Grisham. It was okay. Seems like his past couple legal books are just churned out stories. This one had a good premise but I felt the characters and the stories could have been fleshed out more.

    I am getting ready to read a new Nelson DeMille short story book that just came out. He is coming out with two more books which I have pre ordered. He is an excellent writer!

  9. Sansofpa

    Sansofpa New Member

    I am so sorry to hear you are bedridden for months.

    My diagnosis is recent and I've only been bedridden once,
    for 8 days.

    But . . I took care of my sister who was bedridden. I had help
    3 times a week from a visiting nurse. I had a medical van
    come for her for all of her medical appointments. I followed the
    van and when she was done, they picked her up. You may
    sit in wheel chair, or lay on a cot in the back of the van.

    Since my FMS diagnosis, I'm finding it too difficult to care for
    my Aunt 100% of the time, so I call the van for her appointments,
    too and set up Meals On Wheels 5 days a week for her.

    Our county government here, has an Office of Aging Department, and they
    helped me with everything I needed for my Sister and Aunt.

    We also have several Senior Outreach Programs and one of them
    called Encore has so many volunteers who are fully capable of
    helping anyone who isn't ambulatory find help to go out of the house.

    I realize you're also concerned about pain if you venture out, but
    maybe a day of pain could be worth the end result of making it to
    your appointment . . meaning, some help in the pain department.
    I'm sorry . . I realize you are in serious pain and I might not
    be correct in my assumptions and suggestions.

    Take care,
  10. zenouchy

    zenouchy Member

    I really hope things improve greatly for you very soon. As for books, I'm into biographies/memoirs and social history. I'm kinda picky though about what I read. I don't like those self-indulgent memoirs or books about celebrities that appear as if they just want to make an easy buck. :)

    I tend to enjoy reading books about people who have struggled from some difficult adversity and then overcame it, but it can't be so depressing that it will bring me down (kinda depends on what they overcame!). ;) What kind of books do you tend to like? There's lots of free ones out there (the Classics) on Kindle now, which is really cool. Feel better. Thinking of you!

    Big hugs, Erika

    [This Message was Edited on 06/30/2012]
  11. Bruin63

    Bruin63 Member

    I hardly leave the house, except for Dr's appt or lab work, er sometimes.

    right now i can not walk, Plantar fassitis (sp?).
    had it for years, now it's so bad that I can hardly walk, and I do have amanual WC, but it hurts to use it.

    when my sis lived with me, i could use her powerchair, but she is in an asisted living place, and needed it.

    so we are going to try to buy me one, HMO, won't and we can get on faster without all the redtape. hubby's truck is paid off this month, yeah so we can squeeze in the payments, and still have some left over, for him to play Golf on weekends,

    as they say you never apperciate what you have till it's gone, and i sure miss that powercahir, and yeaah my sis too.

    been long time since i have been here, glad to see familar names, sorry there isn't a cure yet, but its nice to know that this site, keeps on going,

    never give up, never surrender, right,

    God Bless
    sharonk aka Bruin63
  12. ghosalb

    ghosalb New Member

    I am home/sofa bound for 2 years now. I had 2 major relapses in last 10 years and both were after excessive computer use and book reading. I also had a siezure in the middle of the night after little extra computer use that night. As I understand it, we are really stressing our vision part of the brain while reading or using computer. Computer screen is of course lot worse that book reading. After second relapse, I could not even look at people or TV for more than few minutes. I have improved a little now and keep my computer /TV use to max 1 hour a day total. Just a warning to those who may be spending lot of time using computer/books. It is tough for me because reading was the only thing I could do after I could not do physical activities anymore. This desease takes everything away from you. Thank God I can still listen to TV or music unless I am having a bad day. Good news is that even though I was very sick for almost a year, slowly I am improving w/o any medical treatment but lot of rest and after stopping computer use for 6 months. >>>>>>>>>Bala
  13. MicheleK

    MicheleK Member

    Some patient's brain's cannot handle the stimuli of electronics. For them being online or watching and listening to television relapses them as if they went out and ran a mile. You are evidently in this category. It is actually in the brain that the problem lies. ME/CFS is a neuroimmune disease so it makes perfect sense.

    Early on in the disease process I could not handle this sort of stimuli. I am happy that I was one of the lucky ones for whom this passed. Being home and/or bed bound, it really helps me pass the time. Hugs, MicheleK
  14. jc16551

    jc16551 New Member

    Hi Kholmes,

    I remember you from when I came down with CFS in 2003, was bedridden, and tried an experimental treatment from an overseas provider.

    Sure enough, I got better, completed medical school/residency since then, and am in a much better position now.

    I'd say effective treatment is the key.

    -Dr. Dan

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