Tuesday, June 11, 2013

72 Hour Long Days With All of The Energy to Go with Them!???

I need days that are 72 hours long! They also must come with energy enough to get through the entire 72 hours so I can do everything I need to get done! Weekends are not long enough, the weeks are not long enough either. I run out of time, or usually run out of energy! Yesterday I had so much to do. I needed to do lots of cleaning up in the yard, both sides front and back. I needed to trim around trees, bushes, the plants, the flower beds. I needed to rake up all of the old leaves from the North side so we can plant some bushes at the fence. I did get the limb off the house! Yeah! It blew down some where I could reach it with my rake. So, I got to grab it and pull it down. Got it all just about down to trash can size. Then all of my plants take SO MUCH WATER! It seems I am already watering them twice a day! And HOT has not even arrived yet. I really needed to bake something but I never got around to that one. By the time I made the bed, walked, got outside and did all the things out there, then did a couple of things inside, I was already feeling like I might drop. I had to vacuum, clean the bathroom, and really needed to do much more. But, I decided I had to go pick up those other plants for the fence area, and I needed a couple of things from Wally World. So, dammit I braved that store on a Saturday, which I usually always AVOID on the WEEKENDS! IT was full and people rude as usual. I made my way thru picking up my plants first, then going inside. I did find what is called a "Mexican Petunia"! IT is the most unusual and beautiful plant I have ever seen. It is so different from other plants like it. It has a thick stem, and the leaves are a dark almost velveteen smoky color. The blooms are a purplish color. I had never seen them before. I just had to have at least one, so I got one of those to see if I could make it live. By this time, I had been in the sun only a short time, but you know me. With the Lupus, I was already feeling it. My energy level was dropping fast, and I could feel the rash on my face getting worse. I did have some lotion with sunscreen on earlier, but I know I had already sweated it off. I went inside quickly, and picked up the other couple of things I went for, except my medication. Long story, but one of my heart scripts last month I take was the one that Wal-Greens swore they could not get.... the company that makes it had taken it off the shelf, and the pharmacist said they did not have any idea when it would be back. I panicked and even called my doctor, thinking no one could get it. Well, I call Wal-Mart and they had it, no problem. So, against my judgement about their pharmacy I had it filled out there. Or course now as usual the lines are long at the pharmacy! So, I refused to stay and wait. I have several left, and thought to hell with it, I'll pick it up during the week when hopefully the line is not so long. By this time I was totally drained. I barely was able to drag myself to the car again in the heat, get my stuff in it, and get into the car to come home. I came in, watered the plants, got stuff put away, and even though I had not nearly gotten done what I wanted to for Saturday, I had to change my clothes and get on the sofa. There was no way I could do a thing else. I was just totally drained of all of my energy. This was early afternoon around 2 or maybe a little later. Anyway, I really never got much else done. Then when it gets close to time to go to bed, I am wide freaking awake. I am exhausted, but not sleepy. Thus I was up and down all night, finally for fed up and slept on the sofa. I made the dogs come out with me so they would leave Jim alone. Now here I am up at 5am. But by the time I do a few things this morning, which we have all these plants to plant and pot, and a billion things to do, I again will rampantly be lacking any stamina again. Having Lupus or any of these illnesses that just suck the damned life out of you do suck for sure. I am so sick of of feeling so sick.
Did someone mention a "Type A" personality? Well, some may say that about me... it is not so much perfectionism that I seek in my life so much, but more that I want to LIVE my Life! Rather than feeling crappy. tired, or constantly having someone that I know they "love me", but bug the hell out of me saying, You should not be doing, this, that or the other! If I want to plant 300 plants in my yard and have to water ALL of them twice a day, all summer long, I should be able to! IF I wanted to sit on my butt in the A/C and watch movies, then good for me, yet I want that to be a "decision" not a necessity! That is what those that don't have to deal with chronic pain and illness have such a difficult time getting. We don't want to "have" to or "not have to" do anything. We want to be as normal as anyone else. Be in the sun, reasonably, plant flowers, have a garden, clean our homes, go on vacations, each and everything someone who is NOT chronically ill is able to do, we want to be like that. Now, since Lupus, RA, and the other host of chronic pain and illnesses have decided to become my "bed buddies" and room mates, dammit, they tend to try and dictate what you are going to do at any given moment. 
A good for instance of this is this latest medication the doctor put me on for nerve pain. I was all for that. Anything that might help to stop more pain, sure let's give it a try. So, we did. The very first rattle out of the box, I feel tired, more tired than usual. And, I was on the first of the very lowest doses. I am supposed to titer it up 3 times what this lose dose is. If I am already feeling "whacked" out now, how the hell can I ever take enough to see how well it works? Well, I endure the 3 pills a day for two weeks. I thought okay, maybr I jut need to give it more time. So, I go 3 weeks on the low dose. Last week around the end of the week I started to get a bit more brave and try two pills, 3 times a day. Hell I took the first two that morning and I was non-functional the rest of the day. I was just so fatigued I could barely pick up my legs, I felt as if I  was stumbling around , just out of it. So, I only took 1 for the other two doses that day. I braved it again the next day, same thing. Now I am beginning to get frustrated with all of it. If I can't get the dose high enough to see how well it works due to the fatigue, then what is the use? But, I would like to see if it does work, due to the fact the nerve pain is really bad at times. Thus it is damned one way and damned the other. Of course a piece of me figures, okay maybe I have a flare. If that is the case, then I would be fatigued and the medication may make the flare and fatigue worse.   
With any of one these autoimmune illnesses you never know what one thing you do, or don't do will cause. The number of symptoms seem like go on to an eternity and back. Fatigue is a huge one, for all of them. Whether it is RA, Lupus, FM, Diabetes I, or any of the other one of hundreds of them you can name, they come with similar and also their own set of symptoms.   
I realize I have been "absent" for several days... I have been writing, and as you see above, things I have the intent on putting here, but got side tracked in the middle of it all. We are all enjoying our spring and summer that is upon us. Even though we have more daylight time, it seems we have, or I do anyway, "less time". I believe I am so trying to cram 72 hours of days into a 24 hour one, that I am not dealing with it all very long.
I am continuing slowly on the book. I have been doing a great deal of "outlining" and thinking about what I want to put into it, what I want it to sound like and just how I am going to hold the readers attention, without it being boring.  "TMI" and that will mean way too detailed, but lack of information will mean nothing making sense. Thus there we are back to the word, balance. 

I am dealing with fatigue again. I have lots of energy until about noon. Then all of a sudden, I am just worn out. Sometimes even before noon. Right now, I feel as if I could fall asleep. I got up about 5:30 am, which is late for me. I am usually up and about by 4 or 4:30 am most mornings. Then by 10 am I am so tired I feel like I am just going to fall out of my chair. So, then I get up and get to moving, so I can stay awake. Here is another excerpt from one of my many Facebook postings... Gosh Julie... ALL you said is definitely very true! :) I appreciate your wisdom. Your wisdom from life. Your wisdom from living. Your wisdom from accepting and being brave enough to know you must stand up and know when to say NO... to doctors, to medications, to all that keep "life" away from us at times. You hit the nail on the head for me. I DON'T want to miss "life" because of pain, BUT I don't want to miss life because of the things that take away the pain either! Those pieces of us, of how we live, that are damned if you do, and damned if you don't. I have spoken lately about how my "Higher Power" has given me an innate ability to somehow "know" I still have time "here". Now how much time, is time? Well, that I am not sure of. What time is to us here, may certainly not be the same time as in heaven. But, I felt that my "tasks" here I have not completed, thus when I do that, then I shall move onto Glory Land. Then of course, no pain, no strain, no suffering, no worry, no medications, no bills, insurance, doctors, and arguing about any of the "human" daily things that keep us from living more often than they should. Sometimes I forget to ask for guidance. I guess somewhere in my stubborn mind, I think I am supposed to do this without being helped while here on Earth. Yet, just as it is said, "Knock and the door shall open, Seek and you shall find"... I forget to just "knock" or even ask... then I am frustrated as to why it all has to rain and reign on top of my darned head and shoulders... yet I make it that way. If I could let go... and Let God... I would have less mess to deal with. We are HUMAN! We more often than not, do not get IT! We don't feel we can let go. We forget to just ask for help. PRIDE, one word that we sometimes have way too much of... PRIDE.. gets in our way. My Mom has a neighbor. They have been friends now for at least 45 years! They were friends when I was very small. The neighbor has always been kind of an overbearing woman, that feels she must DO EVERYTHING for everyone! He family, friends, strangers, whomever. She has been that way since as far back as I can remember. She wants others to DO as she SAYS! Now don't get me wrong. This lady was almost like a 2nd Mom to me. She taught me so many things when I was younger, that I am so very thankful and I will always admit she is a wonderful person when it comes to that. But, she has TOO MUCH PRIDE! She will admit it. Her and my Mom for some reason, and honestly I have no clue to why, but they COMPLETELY STOPPED TALKING over 2 years or more ago. I honestly feel it is because I moved home when Dad died. Thus I "took over" much of the things that the neighbor had been helping Mom with until I could move back. Which I am thankful for. But, rather than "teaching" Mom, she was telling her what to do, how to do, and when to do... which Mom needs to LEARN as much possible to do for herself. I teach her, then the things she just cannot handle, then I do. Anyway, the neighbor I feel got pissed because I came back, and then Mom did not "need" her running her business. So, I feel that is why she suddenly got "mad" at Mom. I mean any of us can almost run her over in the store, and she will not say one word, even if you say hello first. Her adult son came over and asked Mom to try and "make up" with this neighbor last week. The neighbor had been in the hospital, and her son that came over with his wife, actually had a bad stroke several years ago, and he is in a wheel chair, and cannot even speak that much due to the stroke. But, he was so upset about this whatever it is between his Mom and mine, he came to ask Mom to go over and see the neighbor. He actually said to my Mom, that his Mom told him " She is too PRIDEFUL" to go to my Mom first! How insane is that??? Hey all of us have pride, but to not be able to even admit when you are wrong... and to think the other person must come to them first... I totally think it is stupid, but Mom did happen upon her in the pharmacy two days ago.. and Mom SPOKE FIRST. The neighbor actually after 2 or 3 years of not one word, did speak! Now what will happen after, who knows... but the moral is that I cannot fathom having so much pride, that I could not admit hey, I am wrong, or even if I were not, I would try my best to resolve the issue. Thus, pride, envy, jealousy, all of them just cause nothing but more hardship in our lives. Sometimes I know I feel like I have to be full of pride and NOT admit my pain and illness. I want to hide it, pretend it does not hold me back, but it does... I cannot truly type this and have all of the issues I do just typing it without admitting I have an illness and more than one that cause me a huge amount of pain and suffering. We have to balance all of it out, in order to make our lives whatever they need to be. Whether that mean being on the sofa 5 days a week, or being able to take some medications that give me the ability to get up and do some of things that I want to do and can... all tough decisions... my hardest thing to accept is all the time I seem to WASTE, on stuff like insurance, doctor bills, pharmacists and stuff where people do not do their job right. Thus I have to do their job for them. Those are the things that drive me to a point of almost jumping off the house in insane moments. We do not have lots of time, thus certainly what I do have I don't want to waste it on trivial crap that truly should not have to be such a nightmare at times...  and onto getting into another day of all that needs to be done... I am just not sure "which end to begin" with?

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