So Much Going On and Not Feeling Like Dealing or Coping - Life with Invisible Illnesses, Communication with Family, Friends, & Daily Living

I realize i have not posted in a couple of days. I feel badly about that. I know without new material, new posts, new information, that my audience gets "bored" with my blog.. mmm, new name 'Bored With My Blog?" Just a pun there, a spin on words.

Portions of me have been in a strange state of mind. I have many decisions to make for the upcoming couple of months, and since I am not feeling the best, albeit many do not know that, I've found myself wandering both physically and mentally around like a lost soul in a vast desert, seeing nothing but sand in each direction... the grains gritty, my thirst parched, and longing for a "drink" of sanity that will point me in the direction of an oasis of decisions.


I am having to deal with deciding when to have my cervical neck surgery. I opted for right after my birthday which is the 15th! Yes, almost a Valentine's Baby, so guess who gets flowers, cute stuffed animals, candy and the like a day "after" Valentines Day? In a way, it is nice, because I usually get more simply because much of it is marked down by 50%!

So, after two calls over a weeks time to my orthopedic surgeons assistant, she finally calls me yesterday. My surgery is tentatively set for Feb 18th. So, it may or may not be on that exact day, depending on what they get set up.

Things have been so crazy here, between my Mom's health issues, and running her back and forth to the doctors, plus my own problems that for months and months I dealt with just to get 'well enough" to have surgery. Thank goodness, I believe the abscesses have healed finally. And my pain pump surgery is over, and my new one is in place.

But, the invisibility of these illnesses, does NOT mean we can just say "okay, i just don't feel good, I am not going to the market, paying bills, taking the pups to the Vet, cleaning house, washing the car, taking out the trash, cooking, cleaning... not when it is just YOU, and your two fur-kids! And "they" are surely NOT going to run to the market, or run errands and clean house! :) Although at times I sure wished they could.

So, I trudge on, day comes, things need to be done, and then evening comes, I fix dinner, have to clean up afterwards, and then on the sofa for a movie, and here lately I seem to be ready to sleep much earlier than usual. Last night all three of us, myself, Bub's and the newest addition "Peanut"... well less the nuts, since he was just neutered! LOL! Yes, maybe a bad pun, but I still thought it was too funny not to say... "Sometimes Peanut acts and feels like a nut, sometimes he don't, Peanut, used to have his nuts, now he don't" - Okay the story behind that is with each pup over the past 15 years or so, that I get, I find some new little "tune" that becomes their song... and I sing it to them every once in a while... and bless their hearts, Tazzy, even though she has passed away, and I miss her so much, Bub's that is getting up older now and having his own issues with hip problems, and arthritis, and of course the new "Holy Terrier" Peanut, now each have their songs....

These past two days have been very difficult for me, in every way. I have not felt well, nothing I can put a finger on, just overwhelmed with fatigue, no energy, pain always pain, and just a general feeling that I have of not feeling like myself... even in a mental way.... foggy, and not wanting to deal with daily life.

I felt I would just pop down on the sofa yesterday and not do anything, yet it was trash day, of course I had to feed the dogs, water them, change their paper, straighten up the house, and I was COLD all day long. I rarely have those days, but I could NOT get warm... no matter how I tried, or what I did, I was COLD! And it was cold ALL Day Long! No Matter what I did I could not warm up. Finally, about 4PM, I took a hot shower, and after that I kept pretty warm... today it is a cold morning, but hopefully the sun is out and it will warm up. Our issues here are the wind makes it colder also these past few days.

Again, though this morning, I wake up, not honestly wanting to do anything. I am still just worn out like I have ran a marathon that was 20 miles or more... and my body is trying to recuperate. Yet, if I were to get dressed and go to town to some of our store's, NO ONE would know the difference. They would not "tell" that I am totally wiped out, and unless my brain fog causes me to do something silly in the store, the "invisible" part of Lupus, RA, Chronic Pain, and so much more, are difficult to explain. I feel guilty if I am NOT up and doing things. But, I feel lousy when I have to make myself get up and do things...

I think people tend to see me as lazy, or lack of want to, or whatever. And I do that to myself also. I want to think that I am just being lazy, if I sit down and not move forward with all I need to move forward with.


There is lots going on with my Mom, that has been quite concerned. I had seen the signs of Dementia or worse, Alzheimer's in her now for over 2 years... little by little, but now with these new symptoms, and worsening signs, of forgetfulness, loss of time, loss of what day it is, shuffling her feet, rather than picking them up and walking, loss of much weight, and having issues even getting her to eat, and being just overly concerned about her "bodily functions".... and talking about those day after day... forgetting checks in bills, not understanding no matter how plainly I have it typed out, how to take her medications, she cannot "get it"... losing her credit card earlier this week, she just has so many numbers of things that point to some of one of these illnesses... there is lots more, leaving a pot on the stove until it burned.... Those things are also wearing me down. I need to make a decision on where to go and take her for testing, and how to go about handling that, along with my own issues of needing surgery, that is very important to my own well being.


There are some person issues I am dealing with also. I have a friend that wants to do a "video chat" possibly once a week. Which is a cool idea, and we would make it, send it to the other, like that. Yet, for me, I never know when I will be "dressed" enough to make a chat, and what I will have to say... there maybe lots to say, like sometimes when I email, and then there maybe times, that things are just the same old thing... I guess I will have to pick a day, I go to run errands, that is when I am usually dressed and have my makeup on etc... and make a list of the things I want to say... like I said it's a great idea, and I want to do it, but for me, it maybe something that takes me a bit more "getting ready for" than for some.

I have felt that these "invisible illnesses" as of lately, have caused ME to be "invisible". I feel as if others to do SEE ME, or HEAR ME... that I am "not be heard as to what I am trying to get over to them. This is meaning friends, doctors, family, everyone. I sometimes feel as if I need to go on top of my roof and shout dammit LISTEN! What I have to say is important!

I realize whether ill or not ill, those moment arise, and give us this innate feeling that no one really values our opinions, our feelings, and what WE think in the world...

Stress, too busy being busy, too many hours of running here, there and yonder... attempting to be ALL to ALL... and it is impossible for anyone just about, but especially those who are chronically ill.

I TRULY FEEL that if I DO NOT MAKE MYSELF get UP each morning, MAKE MYSELF feed the dogs, water them, fix me some hot tea, or fat free hot chocolate, take out the trash, and do my "daily things" then I would NOT get up at all.... I have to "force" myself at times to cook something more nutricious rather than eating whatever is the quickest. It may mean making it ahead earlier in the day, so I do not have to try and make it later, when I am getting too tired in the evening to do much cooking. And I believe since many of us, like myself take so MANY daily medications, it changes our tastes in foods, our appetites, and things I used to LOVE to eat, I no longer can even stand the thought of.

I also know for a fact, once the Sjogren's took all of my teeth from me, and I had to deal with a full set of dentures, THEY have definitely had a dramatic effect on the taste of food. I either can't taste it, or it tastes totally different than before, an even though I may not put them in, and try to eat dinner, the food just does not have the same flavor as it did, before that horrid illness took every tooth in my mouth away.

So, not only the illnesses, but change your taste, along with the medications... all of it combined, can have a definite change on your entire system...


I laugh at myself because I also want strange things, like cravings...something salty is one of them... also I may "think" I want something so badly, yet once I get it, or fix it, I just cannot fathom eating it at that moment! Now the next day, it may totally change, but once I have cooked it, often I really prefer not to eat it.

I find myself lately not wanting to communicate with anyone.. I don't feel like saying much on the phone, in person, online, in emails... and I'm not sure why. Maybe it is due to I feel as if I am telling the same old stuff over and over again. Or that I think I am whining and griping if someone asks me how I am doing, or feeling,


I know I am READY FOR WARMER WEATHER, even though I know we need some COLD weather to drive away fleas, fire ants, and other pests... that will be driving us all nuts if we don't have enough cold to get rid of them... I have already put out one round of granules for all of those pests. I know with this strange weather, we could see flea's , fire ants will run rampant, along with all of the other large number of pests we deal with in TX every spring and summer.


Those are other things that no matter how lousy you feel, especially if you don't have anyone else to help out. I even completely overhauled my lawn mower last year. Yet, I don't have the strength in my arms to pull the rope hard enough to start it... hopefully my neighbor will help. He used to be really good about mowing my lawn... but he began to act odd last summer, in fact him and his entire family kind of shunned me for some reason, so I HOPE he still intends on helping with the lawn, or at the least doing the mowing.       


So, as the story of my life goes, in the middle of this, I have to go over to Mom's. Her hone had been "busy" since yesterday evening, and I thought she had probably left it on as she does sometimes... well this morning by 10AM it was still not working, so I had to dress and go over. To find out, it is NOT working, and she did not even know it. So, I had called her Wednesday evening, and Lord knows when it stopped. I tried everything, and none of the stuff in the house appeared to be an issue. I looked out in the box on the house, and I think they have a wire they never replaced, and it appeared to be possibly frayed or causing the problem. So, I had to call the phone company, put in a work order, and be told they cannot do anything until MONDAY... so now she is without a phone, and as I told her, if she had something come up, take my numbers to her neighbors, she has several or call 911 if it is an emergency... and that I would check on her over the weekend... then she tells me that she fell in the front yard this week on the way back from the mailbox... she again is NOT taking her medications correctly, and I am sure that is part of the problem... so she said she needed a "walker"... the cane was not working well... partially because she does not use it enough, and does not take it where she needs it, and said that is why she is not going to church... so I go, buy a walker, take a bunch of magazines, a piece of cake, some newspapers for her, plus an updated medication list... and I ring the doorbell twice, and knock and she does not answer... so again, probably in bed... where she stays too much lately... so I LEAVE A NOTE, IN THE MAILBOX, AND UNDER THE FRONT STORM DOOR, and tell her stuff is on the back porch including her mail... of course I cannot call, due to the phone issue, but I will go over again tomorrow... I am not going back again tonight, I have once again spent most of my day on her stuff... which is fine, but it leaves me NOT finishing my post, and I am tired now after running around all day....

So, I close this with... INVISIBLE ILLNESSES SUCK... and THEY MAKE YOU TIRED, AND PISSED OFF, AND RUIN YOUR PLANS... and on and on.... and no matter how much you fight them, and life, they tend to get the best of most of us.....

                           



Post a Comment