Hi, my name is agent_next_door! — Scope | Disability forum
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Hi, my name is agent_next_door!

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agent_next_door
agent_next_door Community member Posts: 7 Listener
Hello everyone.  I'm new here, and have had nothing to do with online disability groups since a long time ago, when "BBC ouch" got shut down - must have been 10-15 years ago.
I tried really really hard to muddle through my problems, when something strange happened to me. Strange as in woo-woo, careful you don't tell people kinda strange.  This left me feeling kinda isolated, but also fascinated, as it completely changed my world view. This occurred about ten years ago, and while I was able to shut it off, and just continue with my life, it seemed to have triggered a weird sort of response in my body that's gotten progressively worse ever since, of ridiculous amounts of fatigue.  I was never someone who got ill, or complained about getting tired etc, didn't have allergies, in that regard I was lucky.
I have ALWAYS avoided any discussion about it, I would see my GP from time to time on whatever issues, but whenever I attempted to broach the subject (I did so in a hypothetically, chit-chat kinda way) I saw that I would not be taken seriously in regards to what happened to me, but I'd be treated as though I had imaged it.
The problem is I didn't imagine it, and I'm being purposely vague here, but the thing happened to the person I was with as well, and my partner of 15 years (then it had been about 5) noticed profound changes in me almost overnight.
Anyway, so without boring people too much, that's my hello, and why I'm here. Real life outside has gradually become a thing of the past, because of the insane amounts of fatigue, and for a while I was able to produce stuff online to keep myself from going insane, the last few months have gotten so bad, that I'm probably in bed 16-22 hours per day, and of the few hours I'm up, I need to be in a supportive chair the whole time.  It's actually quite pathetic and depressing to think, especially as I don't really have anything I can easily point to, like a car crash or whatever, instead it's just some weird thing that I can't really talk about.  

Comments

  • Adrian_Scope
    Adrian_Scope Posts: 11,011 Scope online community team
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    Hi @agent_next_door,
    Thank you for joining us and sharing what you have. I don't want to pry too much, but you're welcome to talk about your experience if you think it would help you. I could also possibly point you in the direction of some open-minded groups where you might feel more comfortable talking about things.

    Either way, you're very welcome to be here. If you'd like to talk with some of our other members, our virtual coffee lounge is a great place to start.
    Community Manager
    Scope
  • agent_next_door
    agent_next_door Community member Posts: 7 Listener
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    Thank you.  I'll talk about it one day, because I'm sure there will be others that have had similar things but also feel like they can't really talk about it, for fear of being labelled as crazy in some way.

    It's an unusual state of affairs, living in modern western society. There are certain ideas or beliefs that are acceptable, even though they may conflict 100% with other ideas or beliefs, that are also acceptable. Different religions might be such an example.  But if certain ideas or personal experiences fall outside of these arenas, or that what is considered "normal" it can get very awkward for a lot of people, and by extension myself.

    The situation is exacerbated by the fact I know full well, if what happened to me had occurred to a friend instead, and they tried to tell me about it, I probably wouldn't have believed them either.  Perhaps this makes me sound like I deserve it, but I'm just trying to describe the absurdity of it.  I have actually been able to talk about it anonymously in an "open minded" group, and while some people are supportive, I find the debilitating result of what happened is completely lost.

    I'm being purposely vague because I want people to see I can think clearly, before I tell what happened to a friend and myself, about 8-9 years ago now. Afterwards it would be really good if anyone who had something vaguely similar could perhaps chime in with anything they found helpful.

    Many thanks for welcoming me in.

  • WhatThe
    WhatThe Community member, Scope Member Posts: 959 Pioneering
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    I'm thinking aliens 

Brightness

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