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Are you uncomfortable to leave home? (possible xmrv symptom)

Discussion in 'XMRV Testing, Treatment and Transmission' started by redo, Jul 23, 2010.


Have you got a symptom of discomfort for leaving your home?

  1. Yes

    32 vote(s)
  2. No

    19 vote(s)
  1. SickOfSickness

    SickOfSickness Senior Member

    At first I thought to myself that I don't know which to choose. But I chose yes. But maybe it's not what you're looking for in an answer.

    I am sensitive to cold or heat and sunlight (it's bright) and wind. Also I have allergies to many things (trees, people's perfume, detergent in the grocery store). I am also sometimes self conscious of how I look to other people, mostly because of illness, they can see the tiredness in my face and how I talk and move. And they would judge me for not being more polite and saying more, but I am too tired. There are other reasons too.

    I mostly fit Asperger's and other ASD (ADHD and a little OCD). I have anxiety, generalized and social, but sometimes I am pretty social, if I have energy and less stress.
  2. SickOfSickness

    SickOfSickness Senior Member

    Yes, I agree with the stress/freedom stuff Victoria wrote about. If I can't have low stress most of the time & plenty of freedom, then I get very unhappy. Because then there is too much negative in my life, with all the symptoms and things I have. Life sort of evens out for me, and is still half decent IF I can control all my time and choose everything (except for my symptoms and all that). Unfortunately sometimes the world requires too much of me, so I am rather unhappy overall for those days/weeks :(

    redo - Oh, you mean you didn't have the ASD type of things before CFS? I didn't get that. I guess I had mine beforehand. I don't know because I got sick when I was pretty young and my memory is terrible anyway so even if it was only a few years I might not remember accurately. But I even had a hypothesis that ASDs make us more likely to get Fibro, and I guess CFS. Maybe I'm wrong but I felt that a non-ASD person is more likely to seek help for certain pains and symptoms sooner. And less likely to engage in certain obsessive behaviors and solitary behaviors. I mean for me personally, I think they contributed to my illness(es). Because my ASD stuff meant that I wasn't getting out and laughing with friends and doing sports in the sunlight, etc.
  3. klutzo

    klutzo Senior Member

    Hi Redo,
    There are so many excellent replies to this thread!

    When I leave home, which is not often (maybe once a month), and almost never alone anymore, I often feel a sense of disassociation from what I see out there. I see the ugly billboards, the concrete, the rows of gigantic boxy houses behind huge walls, the six lanes of heavy, noisy traffic, and I say to myself: "What planet is this? Why am I on it? I do not belong here at all. I hate this and do not want to be part of it". Is that what you are talking about, redo?

    I was a little bit like this before the illness, as I had preferred living in a rural, woodsy environment, which is why I also have Lyme. But, my husband's job is not portable, and my allergies to stinging insects have become so severe that I would be dead several times over if it were not for city living, so that I am less than 2 blocks from a firehouse with Paramedics. I have to admit that I've often thought death might be preferable to continuing to live in a city.

    I used to be able to handle the feeling that I was living someone else's life when I was healthy, and just made sure my free time was spent in quiet, natural places. Now, I can barely stand to go out, even for required doctor's appts. We have dinner with friends about two or three times a year only, and nobody comes to visit me anymore. Luckily, I have an extensive garden and firebushes right outside the window where the computer is, and I watch butterflies, birds and hummingbirds there. I risk my life to keep it alive (stinging insects abound) because I simply must have nature to live, though I have used plants that require as little care as possible.

    I do have what I would call a conditioned response, in that the over stimulation of traffic or a grocery store, etc. often causes Lyme panic attacks, which often trigger attacks of paroxysmal supraventricular tachycardia, which then can make me black out even just from the exertion of trying to move or walk to a bathroom, which I need ASAP, since a PSVT attack causes my bladder and bowel to let loose everything over and over until empty. These attacks last at least 1 1/2 hrs. and cause a kindling effect which makes repeats much more likely for months.

    Yes, to answer someone's question previously, if there is enough over stimulation, the attacks can happen at home. Example: One night I was sitting dozing in a chair, when a drunk backed into our mailbox. I flew out of my chair from the noise and my heart took off into PSVTs. Paramedics had to be called along with the cops.

    It is not surprising that after having that happen away from home so many times, my anxiety level soars when I must leave home. I used to force myself to go back out there, and the exposure did help make it less bad than it is now that I have given up, after almost passing out in the grocery check out lane, two weeks in a row, two years ago. I now wear industrial strength headphones when I must ride in a car on a six lane road. On the rare days when for some unknown reason I wake up feeling normal, I cannot only leave home but can drive again, and I do so with glee, since it never lasts. I have maybe 2-3 of those days per year and many of them have occurred when my dosage of thyroid medicine has been raised. The others are a mystery.


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