A Lyme Community

Discussion in 'Lyme Disease Archives' started by Truesun, Jun 13, 2008.

  1. Truesun

    Truesun New Member

    Hi Everyone, I went to a birthday party for my neighbor's daughter today with my pic line strapped to my arm and got a million questions about what is going on with me. With my brain fog I tried to answer them the whole time wishing there was a Lyme disease community I could live in. A community where we did not have to pretend to feel well when we don't and could go out at 11:00 a.m. still in our pajamas to water our plants because we haven't been able to get dressed yet. A community where you could say to your neighbor's even your bones hurt and they would understand. A place where you wouldn't have to push yourself to clean your house when even walking is an effort. My husband and I bought a farm down a private lane a little over a year ago. I was then diagnosed with CFIDS and wanted to stop having to put on the semblance of normalacy when I didn't feel normal. Now that I am being treated for Lyme I desire to retreat away from the healthy people even more and just be with -my own kind- I feel so alone sometimes even though I am hardly ever alone. Now I am not even sure that we will be moving to the country because there are so many deer there. My husband is no longer thrilled about the prospect. I wish I were rich so I could build special Lyme housing and we could all just be ourselves. Anybody else feel this way? Truesun
  2. angrob75

    angrob75 New Member

    Since it is 5 a.m and i am up because of course i usually can only sleep for about 3-4 hours at a time i thought i would get on here.....your message i think was made just for me hhahha. I feel the exact same way, maybe in this community you could have things to do in the middle of the night for all of us that can not sleep, but are so tired that they can not stand it, hahha
    I am also having trouble with feeling alone, i am just recently diagnosed and i don't have my first appointment with the Dr until the 23rd so i am trying to keep from going crazy until then. Most of the time, i feel like people look at me and think oh she looks normal but i wish they could feel what i feel for just a few minutes and maybe they would understand what we all go through!
    If you find this community PLEASE let me know i want to be the first to sign up!!!
  3. Junegal

    Junegal New Member

    Even when I was diagnosed with CFIDS I wished such a community existed. Now I wish the same for Lyme.

    Imagine a place where no one said "maybe it is psychosomatic?"

    Imagine a place where no one said "the reason you are so sick is because you don't think positive. If you would stop thinking you are going to keep getting sick, you are. This is all about mindset."

    I would love a place where I was understood, accepted and cared about.

    I do have a few friends (left) that "get it" They don't understand CFIDS or Lyme specifically, at all even, but they "get" that I am not the same person I was two years ago and that I am very sick. My neighbor/friend down the street has known me for 12 years and said she can see what a change it has been for me. How I sit on my steps longing to take the walk 3 doors down to talk to her, but I can't, I don't have the energy. One day we went to lunch and I was really having a bad day and she knew it. The parking was so close to the restaurant for any normal person, yet she said "I'm going to drop you off in front so you don't have to walk at all." Thank God for people like this we are blessed with. They are few and far between.

    I'll come live in your community when you build it!
  4. Truesun

    Truesun New Member

    Junegal, your reply about thinking positive really hit home with me. If I hear one more speech about the power of positive thinking or even the lecture on living and healing by faith, I'm gonna scream. Literally!!! I have a sister that has said that to me one to many times and we hardly speak now. If I didn't walk in faith I wouldn't have been able to make it this far and would have gave up years ago on finding out what was really wrong with me.

    As far as something to do in the middle of the night, my Mom brought me some sewing projects. I can sit and do this whether I am thinking clearly or not. I hate feeling useless so I have found some good low energy tasks. So when we build our dream community, we'll have to incorporate a common area with game tables, sewing area, dry sauna, infrared sauna, HBOT unit, etc. Sitting in a sauna at 5:00 am sounds really good.

    It's funny that so much of what is written on this board seems to be "just for me -since we share such common experiences.

    Maybe I could write to President Bush for a grant to build this on my farm. He's one of us now, maybe he'd be a little sympathetic to our needs. Yet somehow I doubt it. Truesun
  5. munch1958

    munch1958 Member

    I think they are called Connecticut and New York states.
    From stats that I have gathered the infection rate in CT is 13.65% of people and 20% of the dogs.

    It is not unusual for ppl to sit around the dinner table and chat about Lyme. Some blocks have someone in every house dealing with this crud.

    Personally, I don't bother getting dressed anymore unless I'm leaving my house. PJs are super comfy!

    Living with Lyme is a challenge. It's like waking up every day and finding out you have a new disease each day. It manifests itself in so many different ways.
  6. victoria

    victoria New Member

    they are in Aiken SC, think the other is in Maine... already a waiting list, no surprise as they get SPECIAL mortgages etc. Homes are built for wheelchairs etc and small, I think most prices were 'affordable' - around or under $100K the last time I looked. For brand new stick built, it's decent price.

    In Aiken it has helped to revitalize a downtown district, stores are within walking distance etc. So it seems like it's good for both the town and the residents of the community.

    Truly something similar could be done for lyme, etc. pts... problem is, who has the energy to locate a suitable site and also get together all the necessary support.