Wednesday, May 9, 2018


My life has been full of frustrations since March 30th when I came down with in upper respiratory infection that persisted for three weeks, cleared up for my birthday in mid-April, but then another health issue flared up leaving me limping around and having difficulty with stairs, and now allergy season has arrived which pretty much means  have to stay inside since I live in the woods where I am allergic to the pollen of every tree out there.

I need a nice hypoallergenic bubble to roll around in.

I need to feel better because there is a lot of stuff buzzing through my head, a lot of things I need to write, a lot of things I'd like to do.

Having a chronic illness is not easy. Eleven years ago I thought nothing of jumping in the car to spend an entire day hiking the fields at Brimfield antiquing. Gradually I've lost my ability to walk n uneven surfaces. I can walk n flat level places, like roads and sidewalks, but once  hit grass or dirt my feet began to ache, and the uneven surfaces stress my tendons and joints causing them to hurt. I can no longer enjoy walking on the beach because I cannot walk through dry sand. I can no longer go hiking in the woods- something I just to do just walking out the back door and taking the cat along for a hike across the brook and along the trails.

I feel like I once lived in a beautiful sphere, but that sphere is constantly shrinking. It's still beautiful and has so much to offer, but my rebellious auto-immune system is drawing the circle of things I can do in closer and closer. It hurts to cross the circle into the bigger part of the sphere where all the things I used to enjoy and love doing reside.

Sometimes just running to the store can be a major chore- because n top of the achy joints and tendons, the headaches, stiffness and generalized malaise there is like a heavy gray blanket of fatigue shrouding me. I no longer feel vibrant and alive. I feel grounded and sad, deeply disappointed.

I am envious of people who can weave in and out of pedestrian traffic on sidewalks, in crowded joints no longer move that fluidly. It wrenches me to see people run. I used to be able to run. Now, if I come home at night or even during the day I have to make sure there are no large wild animals in the yard or else I'm toast. It's frightening to lose mobility and flexibility. It's disappointing and frustrating to have mental or brain fog, especially when writing has always come so easily for me but over the past year or two it has become more difficult to focus and find the words I want. I am editing and rewriting more than I ever have in my life because I end up throwing out filler words to take the place of the ones  really want to use but can't find at the moment- and then, when I have a good day, I have to go and find those fillers and replace them with the better words I  couldn't remember.

I can't help wondering if this is what Azheimer's is feel like you, but at the same time you know that this is far less you than you know yourself to be. I have to remind myself that Steven Hawkins did amazing things while locked up inside his body. I can build worlds and populate them and pull out story threads...I just can't go out and live my own life the way I want to and do all the things I want to do.

My most bitter regret is not going off and exploring more of the country while I was able to do it. Now, it seems impossible, overwhelming. I am a lively passenger trapped in a tortoise-paced vehicle.

Every day I have to cope and adjust to new limitations. There used to be remissions, but I haven't had one of those in a couple life has been laced through with stress overload all that time, ad while the stress has abated somewhat, I just don't know if this run amok auto immune system will settle down and allow me a respite.

That is my frustration poured into a nutshell.

And now I'm going to go write because, even though I want to tell the continuation of Romney and Ivy's story, once again Garnet and Quella are pushing through and trying to tell their story again. We'll see where this version goes...

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