new here, isolated and unable to cope

Discussion in 'Fibromyalgia Main Forum' started by beagle8, Jul 4, 2008.

  1. beagle8

    beagle8 New Member

    Hi--I am 60 yrs old and have lived alone for over 10 years.
    I was diagnosed with MS 3 yrs ago, and my life has been a mess ever since. The trauma of it wasn't the MS, it was the total lack of support or med. assistance (long story).

    Now that I'm on Medicare I have a primary doc appt next Tuesday, and my symptoms are so bad I don't want to be in my body. I just can't hold everything up anymore!

    The last 2 days I have had burning spasms in kmy pecs and upper back, only relieved by Tramadol and a shallow magnesium salt bath. I don't even know how to talk to people and when I do (over the phone) I hyperventilate.

    We're talking isolation here. I have developed severe agoraphobia. I just want somebody to hold me and help me out. Every day feels traumatic cause I don't know what's going on.
  2. Lichu3

    Lichu3 New Member

    Welcome to the board. I am sorry you have MS.

    Have you checked out any of the MS groups on-line or out there? You might be better served by them than by the folks here with CFS/ FM. Generally, there is relatively more support out there for MS than CFS/FM.

    Google for the National Multiple Sclerosis Society (which has local chapters also) or "Multiple Sclerosis and messageboard."

    Good luck.
  3. beagle8

    beagle8 New Member

    I do belong to an MS message board. I read some posts here
    on living alone and they were more supportive of the emotional issues. Just hitting the wall.
  4. zoster

    zoster New Member

    I'm sorry to hear you are alone and suffering with a chronic illness just like many of us with ME/CFS.

    I wondered if you have been able to contact a local support group for MS at all, they will probably be very understanding and maybe you could get to the point where you could meet up with them.

    If you have been isolated on your own for a while it might seem a bit scary going out. I know it's hard when you are disabled, but it will get less scary the more you do it. If you can just pluck up the courage to do it once you can do it again.

    Do you know of any general disabled groups in your area, perhaps you could make contact. I don't know what is available in the USA but do you have something like the Samaritans here in the UK who you can just phone and chat to someone? Or maybe a local church group would be a good contact?

    Sending you big hugs
    Z x
  5. Rafiki

    Rafiki New Member

    I'm a single woman over 50 living on my own (usually) with a disabling chronic illness (ME, thought for a long time to be MS) and I think that many of us here can relate to your exprience.

    I know that when I belonged to MS boards the differences in the illnesses was pretty inconsequential when we were dealing with many of the common symptoms and the social, emotional aspects of illness. There are many similarities... perhaps more similarities than differences.

    Also check out the Chit Chat board (click on "Message Boards" above your message and choose "Chit Chat" from the options) where people talk about everything from humour to the emotional impact of illness ~ also discussed here, of course.

    You wrote that you were aware of your anxiety and hyperventilation on the phone. I wonder if you could benefit from some relaxing breathing exercises. Learning to breathe gently and deliberately ~ mindfully ~ can impact our mood state even when we are not doing it deliberately. Practicing breathing mindfully for just a few minutes a day (start with 5 min. or 1 min ~ whatever you can tolerate, it's all good) can improve our ability to handle stress markedly. It changed me and I was VERY anxious and have been agoraphobic ~ now I'm not either :~)

    Anxiety can be a feature of ME and, I think, FM. Many of us understand and have developed strategies to cope.

    I do hope you are able to make some friends here.

    I'll keep an eye out for you :~)


  6. lrning2cope

    lrning2cope New Member

    Welcome to this board !

    You are not alone . There are many people here who are isolated and can support you . It doesn't really matter what you may have to deal with . The point is that our illnesses make us loners.

    Please know that I will be thinking of you and keeping you in my prayers. I am an almost 50 yr old women and I am alone alot of the time. I have been branching out and meeting more and more people on the net. This has been a life saver for me.

    I do go to church on Sunday and I am so grateful that the church I go to excepts me just as I am . I don't have to dress up or "put on airs" everybody is just accepting . Would a church be an option for you ? I even had someone willing to take me for a while until my daughter could go with me.

    Another idea : have you thought of calling a 'help-line' ? You can remain anonymous and there are people who will really listen and care for you. Try a MS line or any other line that applies to your life. Just put help lines in your browser.

    Oh , and tell your doctor all of what you have been feeling . They might also have some suggestions.

    Please feel free to write back to me to 'talk'

    I care about you.


  7. PVLady

    PVLady New Member

    I am sorry you are having a hard time. Yes, many of us here have been there. The nice thing about this online community is we all share things that have helped.

    Nothing works for everyone, so you can take or leave it. I will share one of the biggest things that helped me was called EFT (emotional freedom techniques)

    You can download a free 79 page manual on the internet. You do not need to purchase anything, if you see websites selling anything, it is not necessary.

    The eft website is great and has a free newsletter. When I first discovered EFT I printed out the manual and took it with me to use every day. The changes I had were almost miraculous.

    EFT is a way to release and eliminate emotional garbage. It is like weeding a garden where you eliminate things one by one until you see more daylight.

    It is combination of accupressure and affirmations but very easy - It is so easy you think it could not possibly work but it does.

    If you can, try it because you have nothing to lose and all to gain. At the time I started it I was very agoraphobic and had been so for about 2 years.

    As someone told me once, we all have our breaking point and I found mine. Using the EFT techniques was the beginning of my journey back.

  8. findmind

    findmind New Member

    I am so sorry you are alone with your illness.

    I was too until I started talking to the people at United Way. They were so wonderfully supportive and found me a support group I could talk to over the phone.

    Little by little, they helped me cope better, and I finally was able to go to the group meetings.

    I have made a couple of friends I am sure I will have for the rest of my life. No, they can't come over and do my grocery shopping or cook me a meal, but they are my lifeline to the little normalcy having friends can give a person.

    Please reach out...there must me MS groups in your area; if not, then a chronic pain or illness group. Do call the United Way or your local Medical Society (usually by county), for names and numbers.

    Stick around here, too, we need you to help us also, as we are all in the same boat, needing caring, supportive friends we can talk to about anything on our minds.

    Welcome and hugs,