Showing posts with label book. Show all posts
Showing posts with label book. Show all posts

Thursday, May 28, 2015

When it finally "dawns on you" why you seem so totally living in "chaos" even above the drama of Chronic Pain and Chronic Illnesses

I have spent moments, hours, days, weeks, even I am sure YEARS trying to figure out exactly "why" my life seems to be in a "chaotic" whirlwind almost daily.

Yes, having autoimmune and/or any type of "chronic illnesses" along with "chronic pain" puts your life in turmoil more often it seems than not.


Yet, that still does not explain why, with only 2 adults, 2 pups, in a tiny two bedroom, barely over a 1,000 sq foot home, and a back and front lawn that are definitely average in size, along with a "back forty" a small bit of land that up until this fall had the neighbors sheep and goats on it, so we never had to be concerned on it. Why it seems that EVERY DAY of my life I look around, and I am constantly dusting, vacuuming, mopping, sweeping, picking up things, doing laundry, taking out trash, scrubbing tub and toilet. Yet both inside and out, I feel like it appears that this house is dirty, and it is just falling down around me every day a bit more.

When I bought it, I put a LOT of money into it, there was still SO MUCH "restoration" that needed to be done, yet the money ran out. So, even though there was at least 10,000.00 or more put into it, for painting, redoing floors, carpets, furniture, redoing plumbing, a lot of the electrical rewiring, lots of new plumbing, a brand new shower/tub, a new toliet, taking in a wall, knocking one out to have a bit of closet space and to make the bathroom larger. Yet, when it came to redoing flooring in the bath, kitchen, doing the finishing work i the laundry room, a carport had to be put up, and now the list is still endless.

We had some storm windows put in, and had a great deal of insulation put in the walls and attic. Yet, one bedroom did not get the new windows, and the windows are so old, the glass brittle, they lack most of the correct Pins and "glazing" that should be around them. That entire room has really never had been redone, so it needs paint, the windows repaired, a new ceiling fan, carpeting laid, and along with now the outside of the house needs a complete paint job, and some rotten board repaired.

So, I see one of my "mistakes" was not considering just how much MORE I needed in finances to really PUT this home back to its original state. I lacked about 5,000.00 back then, and now with other things going on, it is more like 10,000.00  more that needs to be put in... a new roof, the ceiling in many of the rooms really need to be either repainted or redone. The floors in the kitchen, bath and laundry room laid in. The walls that are in the bath need to be some still put in, and/or "mudded" and textured for paint. So, I should have known that without ALL of those funds, trying to "make" this house "look" neat and clean is very difficult, if you still have "portions" that are not yet up.

So, I look around, and even though SO MUCH work was done, and ALL for the most part myself and my husband did it all. From redoing hardwood flooring to painting, texturing, putting in a larger shower/tub, all of the plumbing, still the house no matter HOW MUCH I clean it, to me it looks dirty. I can dust, mop,sweep, do laundry, and almost every day it could be done again. Nothing ever looks "clean". Even though I KNOW it is, when it is "old" stained, and needs replacing, it just never appears to be clean.

Of course, then there were a stove/oven, the refrigerator, the washer and dryer, bed, furniture for the living room, and the list of all of those things, from the "renovation" work, to all of the other items needed to run a home, lawn mower, weedeater, tools... we had to buy a huge array of tools, saws, screwdrivers, wrenches, tree trimmers, you name it, of course if you do lawn work, and work around your home, you know just how many tools that can take. Blinds, curtains, sheets, towels... yes, we had "some" of these after being together for a pretty good length of time, but even those were beginning to show their own signs of "wear and tear".

So, then come along, and I became "chronically ill" - with autoimmune illnesses, that led into many surgeries, doctors, tests, you name it, I went through it. It seemed endless. Then, many of the things I could do, no longer was I able to do, when it came to the DIY around the house. I had both knees replaced, a shoulder replaced, surgeries on other joints, my neck had to have surgery, then I had "double hernia" surgery, not that long ago... thus me being able to even, "mow", do things in the yard as I once did, many things in the house, either I cannot do them anymore, or it takes me 5 TIMES as long as it used to.

My energy level is constantly up and down. The fatigue at times is just horrid. The brain fog, now has "captured" my mind so much, that even trying to write some days seems like it might be impossible.

So, now after being in this home, that we loved, we wanted, we wanted something we could "FIX UP" ourselves... yet, now it needs a new roof, we need gravel under the carport, windows finished in that back room, carpet laid in there, the house needs a painting all over... and again the list is endless .... and again it seems no matter how much I clean, how much I sweep, it seems nothing is ever "finished" or clean.

Texas is known for its "dust" that seems to come from no where. But, there is a constant battle with a grey dust that seems to settle daily on everything. As I said in the beginning, it just seems endless.\

What makes it even worse, I would much rather be here, at the computer, writing my book, so I can get it published. Yet, that always seems to be the "last" thing on the bottom of an endless to do list. So, by the time I reach down and pull up more things to be done, I am too worn out, physically, mentally and emotionally to really put myself into the writing as I want to.

So, now I sit here, daily, wanting so badly for things to just STOP for a few days, stay clean, not have endless errands to run, or things to do like shopping, mail, laundry, cooking, mopping, paying bills... all of that could just be put on hold for a few weeks so I can have some quality time to write...

Right now, it is almost 1 PM. I am on "empty" as far as energy, with sheets to be put back on the bed, and other clothes to be hung up or put away. I need a shower, and I'm drenched in sweat from the humidity. I have already swept, done laundry, mopped, dusted, including under the bed, behind it, and so on, it id trash day and after a holiday and a massive amount of bad weather I had 3 can FULL of not just trash, but limbs, and 4 other huge limbs too large to cut up. In between, I've done some things on line, but I am worn out from these past few weeks of energy.... and it seems there is never a break. I began trying to work on the inside windows in the back spare room. Well, that is going to take time to sand down, fill in so many places with wood putty and then get them ready to paint. After that, they have to be fixed from the outside with the pins and glazing which is very time consuming. I have a total of 5 windows, all of which need that work on them. I actually still have a broken windows from the hail storm last year. I had hail break a window when I was ill with pneumonia, so it is taped up and sealed up the best I can until I can get it measured and have someone to help me put it in. I can, but I need another person to hold it in place, as I can't hold it and pin it at the same time..


So, hind sight is "20/20".... there are so many things I look back on now, and so wished I would have done differently. I can't tell it all here in one post, but from some of my "relationships", to homes, to where I am living in the nation, to health problems, jobs... and TIME to write my book! That is probably THE MOST important thing to me, is to FINISH THAT BOOK AND GET IT PUBLISHED! But, how does ONE person do it all? And then have enough "time and energy" to feel like doing it all, and then spending time on my book daily.


By the time I've been up since sometimes 5AM, and 4 PM rolls around, I am totally exhausted. I wished I had an easy answer... I wished I had any answer.....



Saturday, April 18, 2015

"A Tagline" for my patient experience! WEGO Health Wtiters Challengs April 17, 2015! #HAWMC

My very first thought is exactly what the "title" of my upcoming book is:


"It's Not ME! It's The Disease    "Stupid"!


Well, the first thought was to add the word for description   "Stupid" at the very end. Of course I surely want people to read my book, so the very last thing I would want to do is offend someone with the title.

Of course, everyone that totally "gets" the brain fog, the lethargic fatigue, the times when you are just too ill to put makeup on to go to the market, and all of the other "times" that come with these insidiously mostly invisible diseases.

This is due to the fact, that we have SO MANY that do NOT understand any type of what we call "invisible" illnesses. 

There are times that either "brain fog" causes me not to be able... to probably makes sense to some, yet I feel they just don't "get it!"

Sometimes I would love to wear something around my neck that says "I TRULY AM NOT WELL!! Just because I may "look okay" and run out to the store, yet at home I look like hell! And there are days I DO park in the handicapped sign zone, and sometimes I don't. Yet, I have those that "stare" at me, as soon as I am getting out of my car. They think if I am not on crutches, a walker, cane, or almost crawling into the market, then why would I have that sign?

When I am upset, often it is due to the pain, physical, mental and emotional. So, those that don't "know" me, probably due to NOT listening or seeing what they should, they are mad because I don't go out a certain time, or they wonder why I can't mow my yard.

There are all kinds of things that go into what we call "Invisible Illnesses and Pain". There are days I am in horrendous pain, yet something may have to get done, so yes I go out. Just because I am out, don't think I am "better".... with anyone you know, that has illnesses such as Lupus, Sjogren's, RA, MS, FM, Chronic other back disorders, migraines, chronic pain.... there are MANY of us that walk thru life, and MANY people out there that don't "see" it, yet even with the "invisible" there are symptoms and signs to watch out for.


I now have to make lists, to remember my lists, so I don't forget my list! One day I maybe hand washing my car, the next I maybe on the sofa unable to move. Or Worse, one moment I can "appear" well, and within hours be so severely ill, that I have to go to the Emergency Room.

So, if there was a "tag line" that I could wear, use, put it on my door, or in my car, would be   - "It's NOT ME!  It's the DISEASE!!   - maybe or maybe not with the "stupid"


Also, one other that truly resonates with me is::

  "Life's Too Short! Eat Dessert FIRST!

 

 

WEGO HEALTH Writer's Challenge for April 2015!  "Your Tagline"...