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Living in a van is working, sorta...

I'm still living in a van. A minivan, now, to blend in better.

I find that with a handicap placard and the ability to have my entire "home" nearby whenever I need it, I'm far less "disabled" by my condition than I am otherwise. Key reasons that come to mind:

  • The ability to lay down and rest or sleep, wherever
  • Access to food I can eat at any time (including fresh/refrigerated food)
  • An enclosed space where I can physically and psychologically shut the world out, inside represents safety
  • Access to ALL medications, earplugs, sunglasses, clothing, shoes, mask cartridge replacements, etc. Hypersensitivities of all kinds require accommodations that can be forgotten, lost, broken, or the circumstances simply shift in a manner you didn't anticipate. Fleeing to my van resolves things faster than having to rush to transportation and then "home".
I can rest for an hour or two at a party and then rejoin. I can spend the night practically on most of my doctors' doorsteps, making it possible to see them by merely stepping out my door and walking inside, then I can rest again right after the appointment.

I'm still not able to get by without a caregiver of some kind. Since the government is being stupid and saying they won't cover the cost unless I'm living in a house (even though I've already qualified for a caregiver) I've been relying on friends, and now primarily my boyfriend to help me out.

Some days I manage to do everything well. Other days I fumble around and kinda sorta get things done, and on days like today I end up triggered and useless from a series of chemical exposures and anxiety attacks and unforseen difficulties. It simply hasn't been a good day.

But...I'm still doing it. A couple years back I turned my life upside down and inside out to focus intensely on palliative care. And while I'm still hugely disabled, I'm a lot more comfortable and happier and freer than I've ever been in my life.

Right now with the constant stressors of living on the streets (I didn't mention the break-in attempts, police pounding on doors, stigma issues, food issues, hygiene problems, etc) my psychological issues have taken priority. I've stopped going to doctors, and realize it's not healthy to make myself do so until I have the psychological support system in place to handle the fallout from seeing them. I'm working on getting that together now.

Life is hard. Life is rewarding. Big hugs to all my friends here - I rarely come around now because being back here can trigger me but just wanted to give an update.

Comments

Hi Dainty,

Just wondered if you have ever tried molybdenum as a supplement at a decently high dose? (Feel free to ignore this post if so!)

Moly is a factor in the body's detox systems for perfumes and chemicals, and might be deficient in people with MCS. I've had MCS to various degrees all my adult life, and struggled with the fact that it seems to wax and wane - with different diets and supplements taken for other purposes. Some of those diets and other supplements may affect molybdenum status.

When I take moly, I do seem less reactive to chemicals, although not completely. Some comments online mention that 1000 to 2000 mcg (1 to 2 mg) per day was needed for that person to get relief, while others said to only continue that dose short term, then go lower, because moly lowers some other mineral levels. But if the person is deficient in moly, they might know by feeling relief with a pretty high dose for a few days.

It's pretty cheap and easy to get on the big supplement websites like Amazon, Iherb.

Here's a link to a page in a book about it; the book isn't about ME, just ordinary fatigue in ordinary people, but the page about moly sums up moly's relation to MCS, I think

https://books.google.com/books?id=31vPCY3WKTsC&pg=PA58&lpg=PA58&dq=molybdenum+mcs&source=bl&ots=LEPYro68MY&sig=fb2_YE6_H79zdwPp-vhW9zBUp6c&hl=en&sa=X&ved=0CFkQ6AEwCWoVChMIvuH-vbO8xwIVwjweCh1rXgPj#v=onepage&q=molybdenum%20mcs&f=false
 
Glad to hear you've got a living situation that's working....in spite of police, break-in attempts, etc. Hugs to you. :)
 
There were many times I was tempted to just buy a minivan and get a P.O. box. Glad to hear you are doing okay overall. Take good care of yourself!
 
hi dainty. for someone as determined as yourself, there is no telling how far you can go.

i am wondering if you have ever been tested for Lyme...
thanks
xoxoxo
 

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