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Uhm, it's bad.

Blog entry posted by Dainty, Jun 18, 2014.

Since my last entry, some people have commented trying to help me feel better about how my living conditions really aren't as bad as they seem. And while I appreciate the intention, it betrays a lack of understanding on a similar level as a healthy person saying, "it's okay, we all get tired sometimes" regarding CFS.

Because I'm not talking about a little clutter - I'm talking about the ability to walk on the floor.

And I'm not talking about a few dust bunnies - I'm talking about massive food spills that were never cleaned up. I'm talking like half the food in my fridge has gone bad, and since my fridge is tiny the counter spaces are covered in food I've removed after it went bad but have not had the energy to clean.

I'm not talking about clothes that have been worn several times before washing - I'm talking about clothes that have been worn for months, are blood-stained, and stink. There are a few clothes I'm managing to wash about once a month - 4 pieces of clothing total (including pjs and such). Not four different outfits, mind you, but four different items of clothing.

I'm talking about eating off of dirty dishes more often than not.

My life has morphed into this from requiring space from my caregiver, and not being well enough to fill in the gap myself, and having no one else able to and willing to do it for me.

And it's really, truly, fantastic that several of you are able to maintain decent living conditions - I applaud you! That's fantastic! But please don't assume that just because you're capable of it, then so am I, and that I'm just being overly particular about my standards. I strongly desire the same dignity and cleanliness the rest of you are taking for granted. Hopefully I will have it soon. :)
Dainty

About the Author

Dainty became ill as a teenager and spent 7 years mostly bedridden from ME/CFS, life-threatening MCS reactions, extreme food allergies/sensitivities, cognitive impairment, fibromyalgia, episodes of temporary paralysis and various unexplained emergencies. The past couple years she has experienced profound improvement from various treatment approaches. With homelessness and PTSD presenting as significant obstacles, she continues to pursue healing full time and find incorrigible opportunities to enjoy life.
  1. Dainty
    Awww, Willow, thanks so much. :)
    WillowJ likes this.
  2. WillowJ
    Yes, you do deserve a dignified and independent living condition. You matter, and you should get to make your own choices. I hope everything works out so you get the help you need.

    Just remember, you are not your floor, ok? You have inherent dignity whether your surroundings reflect that or not.

    You have a lovely soul, Dainty, and a generous spirit.
    heapsreal and Dainty like this.
  3. taniaaust1
    Hi dainty. I was shocked to read your post as I havent read your posts for a quite a while and I thought you were doing far better after some manipulation thingy ages ago.

    I understand, if it wasnt for the 5hrs home support Im getting right now (which is now where near enough!) I'd be almost where you are right now.

    The other week my sister was coming to visit and I actually seriously discussed on the phone to her about bringing a wheelbarrow into my house to put all the stinking dishes in which hadnt been done for 2 weeks (I'd gone to using paper plates) and to put the out in the shed! (till my support workers had some time to do them).

    Only a ME person I think would be discussing having a visitor clear off cupboards and sink and put dirty dishes in a shed. The quality of life of many severe ME people is so terrible.

    Ive had blood (I had a very messy period which flooded everywhere.. all down my hallway and throu my bedroom as I was trying to make a run to the loo) and food all over my floor at times for months. What is worst is that when I go down.. Im crawling around in that kind of thing.. well at least its dry by then but my hands end up so dirty and its so discusting.

    I hope I can keep on handing having careworkers come for the time they do (its hard as that wipes me up).

    I hope things get better for you. I hope you get that home support you are needing.

    I shaved my legs the other day.. it felt so good, they havent been shaved for about 6-7mths
    GcMAF Australia, heapsreal and Dainty like this.
  4. heapsreal
    Good luck Dainty, i hope it all works out.
    Although i have never personally met you, i still think your a good and descent person and u deserve to have your dignity.

    cheers!!
    GcMAF Australia and WillowJ like this.