Thursday, May 28, 2015

Just An Update for LATE SPRING

Just thought I'd post something!! Let those that follow the blog know I'm still alive and kicking. Though I screwed up the title first thing by putting And instead of An Update. BRAIN FOG!! Been quite busy this spring. Ya'll know with my medical condition, it's called, so little energy, wearing out quick, with too much to do. I've so many posts to publish.  I won't post them until I think they are finished. Probably being too much of a perfectionist on my part.

 My son outside for a little while.
One of his good days. 
My son juggling his own his medical condition is a top priority in our lives right now. Getting him help takes a lot of effort and energy. Just the shear volume of paperwork to apply for this program or that program and keeping up with appointments is unreal. New medications this week, more paperwork. There are now two boxes of files for his papers and this illness.

I also try to keep the housework up, the house from falling down around us, and the bills paid. I MISS being healthy.

It amazes me that my disease has an effect on everyday maintaining activities, like dishes or a bath, that have to be accomplished. When I'm in one of my cycles, it's like my body is just made of lead and every movement is pain in the simplest of tasks. It takes forever to accomplish what used to be so easy.

I miss 18 hour or 20 hour active filled days that I used to enjoy. You know that feeling when you have full productive day and you work until all the tasks are done? Those days are GONE! It's so frustrating to stop but I've learned the hard way that over exercise and pushing to do too much is a great, BIG, NO, NO.

I have to be mindful and steady because over working muscles and joints puts me down in those viscous cycles where I am wiped out for days. Then I get nothing accomplished at all and stress to no end. It is such a cruel balancing act, one I lose often, especially right now with my energy focused on my son needing help. I've been pushing and the old blog is suffering as well as many other endeavors. Not being the active person I was, is a hard thing to deal with.

I'm learning to tell the signs of my body especially when I've gone too far. First, I start dropping things, tripping over nothing when walking and staggering like a drunk especially turning a corner. I fell into a grocery display the other week, and knocked cereal boxes all over the place. I was so embarrassed.

My speech, I can't talk when I go too far. The muscles in my face hurt and it's as if my brain is saying the words I want to but I can't get my mouth to. Sometimes I don't recognize what I said. At times like that I elect to be more quiet than usual and I'm a big talker normally.

I can't name everyday objects or a sentence can come out completely backwards. I've even typed sentences backwards or words out of order!!! Weird disease. The brain fog kicks in BAD. My only recourse is to completely stop whatever I'm doing, climb in bed and rest. Then I'm singing Take It Easy!

I've taken natural stuff, changed diet, read everything I can. I am better than when first diagnosed I think because of some natural antibiotics I've been taking. But I think I'm learning better how to live with it. The cause and cure of ME/Chronic Fatigue/Fibro...whatever they want to call's linked I am certain... is still as elusive as ever. I check every week for new developments. Some new info is very interesting, some sound like they are trying to sell snake oil.

But we are alive!! We are blessed each morning when the daylight arrives with another day to tackle whatever may come and get it right.

BUT...I have accomplished some things in this madness around my last post. I went to a power analysis weekend for Virginia Organizing, learned a lot and had a great time. RESTED a bunch after that. Travel really does a number on me. I have a little garden I put in 15 minutes at a time over a very long period and it's growing. Needs weeding but 15 minutes at a time is better than nothing.

I was overjoyed to find I have a lilac bush at the corner of the house. I thought the woody plant looked special and refused to let it be cut down. I was awarded this year with lilacs and the smell was wonderful. I made some more dandelion wine after a year hiatus. It is ready to be bottled and I hope to get that accomplished this week.

I went to Ceres Day and demonstrated some corn husk doll making.

I love the little community of Ceres in Bland County, VA. They took the closed schools and made it a community center/museum. They have the best cooks over there too. If you get a chance to attend an event it's well worth it. Click Here Here are few pictures from the event Ceres Days May 1st 2015.

 And I started a short story book on railroad stories from the family to share before they are forgotten.  So I am going....slower than normal but I'm going. Hope your world is also blessed.