Thursday, December 8, 2016

Gifts for the holidays.

I just read a post on Hells Bells and Mast Cells about what to give as a gift for someone with a mast cell disorder, and it was SO spot on.

Ideas like books, music, and videos being good for us housebound folks, or a delivery service, or any gift cards that work for online items you can order?

Not something I really ever thought much about, honestly but so true. So absolutely spot on. I am passing this thing on to friends and family, seriously.

Well, except for me the books would have to be digital because the off gassing from new paper is a trigger for me. :-P

But digital books are great and so easy to get now, so woot!

Saturday, June 4, 2016

Why asking questions could save lives in the medical profession: the Doctor's

I was in labor for 48 hours with my second child, my son. The friends who had volunteered to watch our daughter all had to go back to work after 48 hours of child care duty, and so as I lay in the hospital bed with my new baby boy, my husband went back home to watch our daughter, planning to come back the next day to get me and our newest itty-bitty.

For the entire 2 hours after he left, the nurses continually tried to persuade me to give them our baby so they could bottle feed him, even though we'd requested breastfeeding only. And then our son had to be taken to the NICU because he was too cold. An hour after that, I am in a panic because the new nurse on shift DOESN'T KNOW WHERE MY SON IS and I find that a little bit disturbing. When I finally got him back, it was about 3-4 in the morning, I hadn't slept in about 3 days, and I was so wired from not knowing where my son was that I couldn't sleep until I went back home later that day.

Monday, March 14, 2016

Progress part II, and wow, some people just don't get it

So, aside from a nearly 2 month family bout of 'the flu of horror,' I have been continuing to work on my home, refining this sucker as it goes.

And it's working. It's working great, so far.  Every day, I pick a room and clean a little section of it. Maybe it's just a tabletop, maybe it's an entire corner of the room, but it's something. And then every day I am adding in what I hope to be habits.

These two alone have made a huge difference
2-5 minute pickups when I have the chance
Moments when I have spare energy, doing something small, like a dish or two

With making a real effort to get a tiny bit more done per day, and then doing the 5 minute pick ups to keep it clean, my house has been slowly but steadily getting cleaner.

I got also got a huge boost for cleaning my garage when my ex came to visit to drop off my son and offered to help get it in shape. I am truly grateful for the help, but it's fascinating (okay, and infuriating) to hear his opinion.

Because the thing is...he doesn't really believe in chronic illness in terms of its reality. Don't get me wrong, he believes it exists. He believes I have one. But the day to day reality of it never becomes part of his internal dialogue about my daily life.

I think my interactions with him, where I've heard most theories that came into his head about my life and my actions (often whether I wanted to or not), have helped me understand how completely clueless folks can be when they don't have the same experience as someone else.

It's easier with something big and obvious - this person is blind, that person lost a leg, this person is from a different culture. People see that and there is an obvious physical sign that they may have a different life experience than you. But what about folks like myself, those with chronic illnesses, often invisible illnesses?  I don't think most people understand just how different our realities are from their own. After all, it looks the same on the outside, right?

And so people try to frame what they see by their own experiences: why do THEY do the things that they see us, the chronically ill, doing?

And they can get it so terribly wrong. If we have a messy house, it's because we're slobs or hoarders, not because we're ill and exhausted and made a choice that day, or that month, to sleep and avoid further illness rather than clean the house.

If we choose to clean only a little bit each day, it's because we're lazy or procrastinators, not because that's the only amount of energy we have to spend that day.

If we choose to not go to a social gathering, it's because we're anti-social, not because we're sick.

And this knowledge? It has actually helped me a lot this visit, believe it or not. Because I have been slowly improving things in my house and my life (thank goodness for new treatments that are working!), and then the ex comes along and starts to share what he thinks is wrong, and how things 'should' be done...and it's all so completely the opposite of my own experience that it helped me realize that I'm doing the RIGHT thing.