ideas? housebound, but want medical care

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Sep 15, 2005.

  1. Shannonsparkles

    Shannonsparkles New Member

    Hi guys. I'd like to get a doc of my own, but I'm housebound. I can't even THINK about what it would take me to get out of the house... be in a car ride... wash my hair and clean my glasses... all in one day! Not to mention the sitting up and interacting with people...

    You guys are good problem-solvers. What do you think? Is there a way to get help without draining myself even deeper into DD? When I first got sick I had a doc, and it made me get much worse quickly to have to leave the house to see him. (And he didn't help me anyway, after all that!) I'd like to do this without making myself worse, if possible.

    (((Thank you all))) Shannon :)

  2. orachel

    orachel New Member

    Oh, and by the way, I responded to you in the "healthy food" post of Alyssalyns...wasn't sure if you saw it, but I'm telling you, you need to get this book! Have amazon deliver it to you!

    I know that somewhere on this planet, there's got to be docs who still make house calls, but I can't imagine trying to find one who also dealt with FM patients. I'm not completely housebound, but pretty much the only time I can go anywhere is to the doctors or Aquatic therapy...and that's really hard for me, so I've gotten pretty good at figuring out ways to do it with least energy possible...

    First of all, call your doc (or look for a new one from home, via internet or phone...check Web MD for referrals if you need) and get an appointment. Explain to the receptionist scheduling appt that you are severely disabled, and will not be able to wait for doc at all...sitting for long periods isn't possible for you. Make sure you get a commitment that when you get there, you can get in to see doc as quickly as possible, maybe even ask for an appt outside normal business hours. I've gotten docs to see me late eves or saturdays, even when they don't normally. Just ask really nice and explain why you can't sit and wait.

    Make sure you wash your hair and put clothes (easy ones!) out day or two ahead of time (I know it takes me at least a day to recover from washing my hair). I do it most easily by sitting in the tub in a warm bath...I have a hose thing with a shower nozzle on end that sticks onto my bath spigot ($10 at target, I think). Then I hold the hose thing up to wet and wash my hair. There are times I have to rest my arms and relax in tub 5-10 minutes at a stretch while washing and conditioning, but as long as I do rest every few minutes, I can get thru it.

    Finally, do you have a family member who can pick you up and take you STRAIGHT to doc and STRAIGHT home? Maybe someone with an SUV or Van that you could even recline in if you have to? Otherwise, my town has a great "little bus" service designed for seniors and others with mobility issues. It's free, you just have to call and reserve time and destination with them. If you call social services in your area I'm sure they can refer you to right place....again, explain that waiting and sitting for long aren't possible for you.

    Finally...Shannon, whatever you do, promise me that you'll find some way to get some medical care. While I'm not completely housebound yet, I fear I'm on my way there quickly (and I'm only 30! Imagine how frustrating that is? lol). But it has been proven that absolutely doing no activity whatsoever really aggravates our condition.. It's called "deconditioning", and its the same thing that happens to coma patients or paralyzed indivuals...eventually, if you don't use it at all, you do lose it, period. I'm not telling you to run a marathon, or even walk around the block (no way I could do that either, unfortunately), but working hard to get up and get to the doc for some very very necessary care is a good start. Maybe you can even work up to some aquatic physical therapy. Mine's free with insurance, and getting into that 92 degree pool in a 0 weight bearing environment makes my whole body feel better. I can only do abt 15 minutes of the tiniest exercises, like rising up on my toes, swirling my arms in water gently, but already I'm starting too feel a little improvement in my condition. And better than that, I feel good knowing that my body is getting some exercise...hopefully I can work up to more activity soon, but taking it very slow, or I have a major crash.

    I know this is a long post, but I wanted to give you some possible options, because I CANNOT imagine how messed up I'd be if I didn't get to the doc regularly for different treatments and medication changes/updates. I probably literally wouldn't be able to move at all, or even get to the bathroom by myself.

    I hope some of this could be helpful for you!
    Gentlest hugs!
  3. orachel

    orachel New Member

    You're only 23 in your post! I'm so so very sorry that you're in this position!!! Not that it's any worse when someone younger gets sick than someone with more years, but I'm just so sorry you have to be stuck at home all the time. If you ever need to chat, or vent, or whatever, I'm here! I see you live with your dad...I hope he's supportive and that you have lots of fun hobbies to keep you busy at home!

  4. Rosiebud

    Rosiebud New Member

    you do need to see a doctor and get some medication so that you can get around a bit better. I am mostly housebound too but with my meds I manage to go see my doctor when I need to and occassionally I can go out for lunch, at least a couple of times a month.

    I pay for those trips with more pain but at least I manage to get out. In UK doctors will still make house calls but it's very difficult to get them to do that.

    Orachel is right, if you can get someone to take you and bring you back and maybe even stay with you while you see the doctor. It probably will make you feel worse but at least you should have the medication you need.

    I hope you manage to get there. Let us know.

    [This Message was Edited on 09/16/2005]
  5. Bailey-smom

    Bailey-smom New Member

    or cause a problem. . .could you call social services to see if they could be of assistance to you?

    I would do my darndest to get there but this may be an option if it is impossible. We will be cheering you on. I understand that it is difficult and I am sorry you have to go through it.

  6. gnanny

    gnanny New Member

    Just my opinion mind you...I think the first thing is to work up to leaving the house. Baby steps. I think the longer it is between getting out of the house the harder it gets.
    Yes I want you to be able to get to the doctors..but more than that I want you to get out of the house. You dont mention if you have physical mobility issues. If its the fatigue and pain then you need to set smaller goals. Baby steps.
    That job and that guy are all outside of the house. You are young, you have so much waiting for you. You need to work up to being a participant, not merely a spectator. Small goals, baby steps. Then getting out to go to the doctors wont seem so overwhelming.
    My heart breaks to think of someone so young with so much potential being held prisoner by this DD.
    remember steps.
  7. darude

    darude New Member

    I see you are in Calgary me too!!!!!!!!!!!!! I am in Sandstone and have found out lots of info and help in this area. We have some great groups here and I would love to put you in touch with a lady with cfs/fms who could help you. I'm not sure if we can still give out emails but I will check on it first. I'll put some info together for you and post. Also listen to the radio station VIBE985 as my daughter is an announcer there and is helping us. Hope to hear from you soon.
    [This Message was Edited on 09/16/2005]
  8. gnanny

    gnanny New Member

    darude is a blessing. This is just what you need.
    bless you both !
  9. spasco

    spasco New Member

    You have got to get up and get out of the house. I know how tempting it is to "cloister" yourself in your house, but it is a dangerous road to take. I have had this since I was 19, making it 27 yrs with FMS and Crohn's Disease. I know the pain can be overwhelming, as well as the weakness. BUt, if you give in to this, it has won, you have lost.

    This does get worse with inactivity. No matter how much it hurts, you have got to get up and get out. Yes, there are days when you need to just veg on the couch, but not every day. I'm not accusing you of being lazy. I don't believe you are. I believe you have been overcome by the FM though. It sounds like you have got a serious case of depression. You really must get to a dr and get treatment hun. Please!

    God bless! Stephanie
  10. orachel

    orachel New Member

    and what a genereous offer of help!

    Baby-steps, is right...Give Darude a shout...maybe some of the programs/assistance that you learn about will be the blessing you've been waiting for!
  11. Rosiebud

    Rosiebud New Member

    if you want the email from Darude, you can both go into CFS chat room - usually no-one there, everyone uses Fibro chat room and you are allowed to exchange email addresses there.

  12. pumpkinpatch

    pumpkinpatch New Member


    If you go to calgaryhealthregion website there is a list of doctors that are accepting patients.

    You shouldn't be suffering alone. If I can help in anyway let me know, I'm in Edgemont, Calgary N.W. Let me know.

  13. Shannonsparkles

    Shannonsparkles New Member

    Thank you. You guys are awesome.

    cindycor & darude (and other Calgarians?), want to exchange e-mails in chat? What time and day is good for you? I'm in the NW. :)

    Thank you all {{{ }}}
    [This Message was Edited on 09/16/2005]
    [This Message was Edited on 09/16/2005]
  14. darude

    darude New Member

    My daughters name is CLaire! Check out VIBE985 radion station website she wwill be on air tomorrow and you can she will give you my email. I'm in Sandstone NW! Oh and Cindycor give me a call we should get together ALL OF US!
  15. pumpkinpatch

    pumpkinpatch New Member

    I'm online now. Are you there?

  16. Shannonsparkles

    Shannonsparkles New Member

    When can I meet you in chat for the e-mail addresses? I'm avaiable most any time. ty, Shannon
  17. pumpkinpatch

    pumpkinpatch New Member

    How about 11 a.m. today. Thinking about going out this afternoon.

  18. rbecca47

    rbecca47 New Member

    I to became housebound, didn't want to leave and still have trouble going out. now before i leave, i take chill pill ( my kids call it that). it takes me a good hour before i leave of deep breathing, and telling my self that i am only go to doctors, i take a cab, cause i have a fear of driving any more. i only go to doc,thyrapist, phys doc, and to grocery store,( and that if i have to). i usaully have a panic attack before i leave. but getting better. with medication and thyrapy. i am trying very hard to leave the house. but it does drain me, and cause alot of pain. so stay strong, and see a doctor. and don't isolate yourself, it is easier said than done. i will pray for you, get better, and take care of you
  19. Shannonsparkles

    Shannonsparkles New Member

    Sorry I missed your message! Afternoon would be easier for me if possible, or later. :) What time should we try again?

    Thanks for your patience. ((())) Shannon

    Darude, just got off the phone with your little girl. :) And I have your e-mail! Thanks.[This Message was Edited on 09/17/2005]
  20. darude

    darude New Member

    My little girl is older than you 24!!!! Heheheh I'll look for you email and then we can get together Cindy too!