Isolation during Crashes..need input

Discussion in 'Fibromyalgia Main Forum' started by bree~leigh, Mar 20, 2007.

  1. bree~leigh

    bree~leigh New Member

    Hi All!
    Wonder if you can advise on this. I have been home bound for 5 weeks due to being in an all time low cycle with my CFIDS. I feel very isolated. (I am a mother of 2 teens and my husband is wonderful so I get some interaction at night, but the days are killing me!)I DO count my blessings for those precious few hours I get to see my family at night.

    I tell my friends that I am in a down cycle and hope to feel better soon and get back to my "normal" level of activity soon. They are very busy, e-mail me occocasionally wishing me well and say they miss me.

    Like many friends that don't have chronic illnesses, they simply do not know how to respond when I am in a down pattern and they simply just stay away until I am able to get up and around again.

    I have such mixed feelings because I do not wish to impose upon them by asking them to visit if they truly hate seeing me this way (I think it scares them) yet on the other hand I feel so isolated and sad due to this which I know is not good for me mentally.

    When I speak to them I am honest about the struggles, but also always speak hopefully that I will regain strength soon, then move on to talking about happier things and asking them about their I don't think I am a downer to talk to, at least I dont think so??!!

    So here is my question: What do I say to my "well" friends when I am in a down cycle so they may wish to stay in touch with me during those times? AND/OR

    Do I need to start developing friendships with other chronically ill people that have a better basis for understanding and won't be scared to spend time with me?

    I know this is a universal struggle for all of us and I am sure many of you have found ways to develop and/or maintain meaningful friendships during our lowest points.

    Input welcomed and appreciated.
  2. AllWXRider

    AllWXRider New Member

    A positive attitude helps anyone get better. The expression is true however: "Birds of a feather, flock together"

    If you say the word virus, you'll spook off lots of friends. But if you say "I have a compromised immune system, I catch everything that comes along" ppl will hang around longer.

    I found that my immune system was compromised due to Lead toxicity and am chelating it out. I feel better with each cycle. I would highly recommend a hair analysis just to rule out metal toxicity.

  3. Cheri5151

    Cheri5151 New Member

    when in pain, and decided that for people who probably don't understand, it would be better for me to sound more positive. But it's immportant to have all kinds of friends and I think we have to decide how much we want to say to some one who is caring and concerned or clueless or somewhere in between.

    I've had a bad flare up recently, but keep hopeful that I will feel better. Joining a church helped, but not doing well enough to go right now, so use the internet and tv instead, which of course, increases pain levels.

    Moderation, rest time, and taking care of yourselves has to come first, so we can give our best to the people we love.

    Good luck and feel better.
  4. Jackie65

    Jackie65 New Member

    I am home alone all day, I live with my son who is a senior in high school. My daughter is in college and since the Fibro has gotten worse this last year I have "lost touch" with my friends. It gets very lonely and especially when I am having a bad day it is so much worse. My son will be leaving for college in August and I am having a very hard time dealing with that, I will be completely alone, day and night. I was engaged for three years but he left last year when my illness worsened. I am very bitter because he was my true love and we were going to be together I face my future completely alone. I am only 41 but feel like I am 90. And I worry what will happen if I get to the point where I need help with day to day living. I am going to have to move this summer, can no longer afford the place I'm in...I have NO idea how I am going to do it physically. Within one year my life turned upside down...but I'm supposed to avoid stress!!!???

    I know so many of us here have similar circumstances and have so many worries on top of the illness...and I truly believe that we are some of the STRONGEST people around !!! I know that many of the doctors I have seen over the years would not be able to cope with att that we carry. That makes me feel a little better when I am struggling. I hope everyone is well today :)

  5. bree~leigh

    bree~leigh New Member

    Thank you to all who replied. I gleaned wisdom from each of you!

    For Jackie, this situation must be so stressful. Are you currently on disability so you have income for your new residence?

    Just a thought...I have often wondered about those of us that live alone and the potential benefit of finding others with our illness to live with for mutual support. I wonder, Jackie, after your son leaves if this may be a possiblity for you? Where do you live?

    I may start a post to see if others have done this or thought about it, not just for Jackie, but for others who may be in the same situation.

    I read another post on another board of a woman who had vision of several single women with CFIDS living together in a big house, pooling their resources and coping daily together.

    My church has an informal network for single mothers struggling to make ends meet. They frequently find homes together to share resources. Sometimes it is temporary, but some have found great solace and support in living with someone "in the exact same boat" and it becomes long term.

    Jackie, please post regularly on the status of your living situation so you gain support and ideas from our group. You do not have to do this alone.
  6. shanwill

    shanwill Member

    Hi Bree,
    I totally get your situation - as it is mine is well. I've actually met a friend now from this board and we email regularily and speak on the phone about once a week, it's really helped. all my others friends are healthy and she ofcourse i can really vent and empathize with.

    I think when you're in a relapse, it's good to tell people where you're at and what you need, leaves out the guess work. these are your friends and family and want to help and be there, maybe if it was only a half hour visit it may help lift your spirits, or even a quick phone call. when this is not an option, I come on this board, watch a really good movie, take a long hot bath and pray to starting inching back 'to normal'.

    hang in there in the meantime, but remember to reach out.

    take care,
  7. Goldenlight

    Goldenlight New Member

    I know just what you are talking about. I live alone and the isolation has been a really big struggle. My parents live about 10 miles away so that means occasional contact, not daily contact. My kids and grandkids live across the country. I moved to this state a couple of years ago for the warmer climate. I needed to move again last summer to a different suburb (so another new community). I think this will be a more permanent location. I do have a couple of friends who live between 40-60 miles away. We try and get together, phone or e-mail somewhat regularly. They do not have health challenges and seem to accept and at least try to understand my health limitations for socializing. Lately I've needed to cancel out on any plans made. When I'm feeling really awful I don't want anyone here to visit -- nevertheless I still feel isolated and alone. The majority of time I am just alone. The isolation is so hard. For awhile now I've had an increased level of symptoms and so it is very hard to know how to join groups or do other things to form friendships. There doesn't seem to be active CFS/FM support groups around so don't know how I'd form friendships with other health-challenged people. I just go around and around without find solutions and in the meantime am feeling the effects of unending isolation.

  8. suzetal

    suzetal New Member

    I am not well I am in a flare .I am staying in bed for a few days and could use a little company.

    Mary it would be great if you can come over and make some of your delicious soup.

    I think a visit and the soup will get me on my feet sooner.

  9. bree~leigh

    bree~leigh New Member

    I appreciate all that shrared their stories about coping with isolation during flares.

    This board has been very helpful, a source of wisdome, support and strength.

    Many blessings, Bree
  10. dahopper

    dahopper New Member

    I liked this thread. Would like to see more input. I want to give some imput but just can not think striaght enough right now. Hugs, Love Debbie
  11. Jackie65

    Jackie65 New Member

    It's funny how things work out...a few days after replying to this I got info on apartments here in town that are for the disabled...I got the application in the mail today !!! And they have an opening !!! They are very nice apartments and the rent is based on income. AND one of the BEST parts...I would be able to keep my dog !!! I am really trying to not get my hopes up but this sounds ideal for me. The application process will only take 30-60 days. The only down side is all the packing I will have to do, but I have decided to get help with that, it's too much for me. So, keep your fingers crossed and thank you so much for caring !!! Jackie

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