Blog entries from Dainty

Dainty has a total of 48 entries.

  1. Dainty
    I got a job! This is significant, as it's the first time in my life I have ever been an employee. Previously I was always too ill, ever since a few months before my 17th birthday. I'm 28 now, and I just got my first job. I've been freelancing for over a year now, and I still have some steady gigs with that. But this is a proper job! It's part time work house-keeping at a bed and breakfast....
    Dainty, Jun 11, 2017
  2. Dainty
    (Hope you all don't mind me posting something here that has nothing to do with ME/CFS. There's been a major change to my life via my partner's job and I felt it ought to be shared as part of my journey.) I don't want to be tough. I don't want to be strong. I don't want to be "okay". I want to SCREAM and cry and generally freak out. Because I fucking love you and I don't want to see you get...
    Dainty, May 18, 2017
  3. Dainty
    So I have a new primary doctor. I never really expect the doctors who take medicaid to actually help much, but I've found that they can at least help a bit with palliative care and some secondary issues. This one, a naturopath completing her residency, seems to be going above and beyond to tackle my case. She sent me a message via their system. "I see you saw a gastroenterologist back in...
    Dainty, May 12, 2017
  4. Dainty
    Many of you are familiar with the basics of my story. Mostly bedridden for 8.5 years, then significant improvement from a combination of n advanced form of cranial osteopathy, meditation techniques, lots of rest and intense lifestyle changes. The past 3ish years my improvement has continued, but been gradual as I struggle to survive on the streets in my van. My osteo says if I just get some...
    Dainty, May 5, 2017
  5. Dainty
    So, I recently got 3 teeth pulled. They were all infected, so they had to go. Predictably, my body crashed - I slept about 22 hours/day for 3 days straight. I haven't left this room in 4. He held my hand through the entire procedure. When I was traumatized from the immense pain and had them stop to give me a break while I sobbed, he hugged me until I felt ready to continue. He has kept...
    Dainty, Feb 27, 2017
  6. Dainty
    Today I watched that amazing TED talk by Jennifer Brea for the first time. And it all comes flooding back. The non-stop wall of pain. The crushing fatigue, so severe and causing so much suffering I think it should be labeled a form of pain, too. The desperation. The confusing mish-mash of symptoms that ebbs and flows with no discernible predictability. Years of not seeing the light of day....
    Dainty, Feb 21, 2017
  7. Dainty
    Intro Many of you once knew me as one of the sickest patients on here. I can still remember the days where all I could handle was the chatroom. And when I mentioned I couldn't read the forums people would get all confused as to why - because it was too much for my brain! Mostly bedridden, mostly roombound, severe MCS doubly complicating everything, only able to eat 5 ingredients, it was a...
    Dainty, Dec 25, 2016
  8. Dainty
    Being disabled gets to me sometimes. Usually I can shake it off. When an unexpected loud noise causes me to suddenly shriek and collapse? Ahem. I'm fine. Moving on. A stranger in the street mocks me for my mask? Whatever, dude. I lose balance on the dance floor and it's sudden death grip on whatever poor soul I happen to be dancing with at the time? "Heh, sorry!" Thing is, I've been doing...
    Dainty, Jun 1, 2016
  9. Dainty
    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...
    Dainty, Aug 22, 2015
  10. Dainty
    Today I walked into a food bank for the first time. It's taken me three months of homelessness to reach this point. SSI is a little over $700/month, food stamps are $116, and so long as my only purchases are gas, food, and the barest of necessities it's doable. Unfortunately three months straight of vehicle breakdowns left me short, and it wasn't long before the credit card maxed out, too....
    Dainty, Mar 19, 2015
  11. Dainty
    It's been so long since I've wandered over to this part of the web. Life has been ridiculous, but good. I'm still too ill to care for myself even living in a house, and yet I'm somehow eeking out survival from a van on the streets of Seattle with more happiness and freedom than I've experienced my entire life so far. Living in an unheated, sparsely insulated metal box through the winter isn't...
    Dainty, Feb 25, 2015
  12. Dainty
    I don't know where to even start. I was so close. I was healing. I was recovering. Then I had a few hour's notice to find somewhere else to sleep. The fan I'd been using as protective white noise for months was suddenly "too disruptive" for my dad to sleep, and without warning he put his foot down and said not another night. And I was left scrambling. I was still welcome to stay at the...
    Dainty, Oct 31, 2014
  13. Dainty
    So, recovering from being almost completely room-bound and MCS so severe that the only clothing I could tolerate was homemade from unbleached undyed organic cotton material that had been boiled, soaked, and washed for months before it could even be made into clothing... ...I find myself with a clothing problem. As in, not having enough. And hating all my old stuff (which is mostly just...
    Dainty, Oct 5, 2014
  14. Dainty
    It's heartbreaking, how courageously my body tries to heal. Uproot me from wherever I'm staying on a few hour's notice, resulting in a scramble to pack everything up and no energy to unpack and settle in. I'm here on the couch, I managed to get the food in the fridge and change from jeans to sweatpants and that's it. And yet, when I curl into the uncomfortable couch's pillows and pull the...
    Dainty, Sep 22, 2014
  15. Dainty
    "But wait a minute! I thought you were doing better!" I am, folks, trust me. You see, my improvement has all happened outwards, expanding away from the house, because I share a house with people I find very stressful to be around. My long time caregiver used to handle the basics for me, but both she and I have found that far too stressful so it's no longer happening. Simply put, I choose to...
    Dainty, Jun 22, 2014