1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!

Welcome to my New Life

Blog entry posted by Dainty, Jun 22, 2014.

"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 pour all my energy into the ability to get out of the house instead of pouring it all into taking care of my space.

The PTSD diagnosis is making a lot of things make sense. My (former) caregiver is a major trigger, for example. And I'm finding that it's ten times harder to concentrate or remember things when she's involved. My house is not a "safe" place for me - my PTSD is constantly being triggered, leading to fits of emotional breakdowns and generalized poor concentration and memory.

I still have some CFS cognitive issues, but I'm noticing that the ones that are specific to certain people or certain topics are PTSD, and that with my newfound improvement the PTSD is limiting my life as much as my ME/CFS and MCS used to. When I stay other places for a week or two I'm able to clean up after myself. Barely, but I manage to do it. I'm not able to when I stay here, because I cannot concentrate long enough, I don't have the energy, I can't remember, I get confused, and I can't plan for when I have the ability because people keep DOING things that make me ill, whether it's triggering the PTSD or cooking with onions (which forced me to evacuate) or using chemicals or disturbing my rest.

When I'm able to get out of the house alone, I suddenly have the ability to feel what I'm made of physically, and that has strengthened incredibly these past 2 years of improvement. But I only have that when I'm free from the massive stressload that is my living environment. I can drive, but I have no vehicle. So I've learned to take the bus. I still have to negotiate in order to get someone to drive me to the bus, but I've begun doing 2 hour bus rides each way in order to spend all day in the city. (!!!!) And yes, I crash afterwards - hard - but it's worthwhile, because I'm starting to actually have a life. And moreover, my health is withstanding it. It's a little shaky at times, but this is the next step in healing, to actually see what my body can handle, after so much improvement.

I always make sure to recover fully between them, and I still have so many Dr's appts. to go to and dental work to get done and all that that my schedule ends up being pretty busy, just resting a few days inbetween each outing.

I'm doing new things practically each week. Yesterday I sat next to a campfire for the first time in over 8 1/2 years. I wore my gas mask and glasses, and it worked out. I'm driving several times a week. I'm even going grocery shopping at brick and mortar stores! I'm making appointments and keeping them, even with a completely unpredictable sleep schedule and averaging only 4 hour blocks of sleep at a time.

So yes, in many ways, I'm doing so much better. But that's only because I'm starting from an extremely low baseline and I'm being really strategic about what I do. Getting out of the house, yes, creating a healing space inside the house - no. Impossible. At least, impossible for me on my own. With the help of professional carers the hope is that will improve.

I wriggle a little this way, a little that way, and slowly feel like my life is gaining traction - in some areas more than others, but still! :)
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.