Tuesday, March 12, 2013

What Is Truly Normal? & How Do I Cope When It All Seems To Much?

Two stupendous subjects as I said at the end of my last post. I face these "dilemma's" frequently. When I say frequently, I mean daily for the most part. We, as being victims of chronic illnesses and/or chronic pain (which by the way usually run hand in hand) always question each day as being normal or not? We tend to think about our lives "before" this mysterious "blackness" washed over us, and up until then, we always thought of our lives as normal. We went to work, we had our family, we cooked, cleaned, went out to parties, dancing, dinners, school functions, and did all of the things that most "normal" people do. Back then I never questioned if things were "hard" to deal with. I just accepted that my life was pretty good, and I guess or may I say "I KNOW" I took those years for granted. We tend to assume nothing will ever change the normality of our lives. Other than kids growing up, going to college, and us growing older, we rarely sit around trying to decipher what might "normal" be if we were chronically ill? Not a question the majority of the population asks itself; UNTIL you are CHRONICALLY ILL. Then that seems to be just one piece of the "new normal" of the rest of your days ahead. Acute illnesses, such as the flu, a broken leg, having a surgery, and so forth, come and go. We may be very ill at that moment, and it might even last several weeks, let's say if you are recovering from a major surgery. But, you know that you WILL FEEL BETTER! It is temporary. Better is coming up.
BUT, when you have a chronic illness, such as an autoimmune disease, things such as Lupus, RA, MS, Diabetes 1 and 2, FM, CFS (it seems we have come to "letter" now for all of our diseases), you know you will NEVER HAVE A NORMAL DAY AGAIN! No matter how "normal" you want it to be, and you do have days that have a tinge of the "normality" in them you once had, but your entire life is turned right side out and upside down, with no way of ever truly finding what is "true North" again. You KNOW you life forevermore has changed. You are either going to battle with some particular illness that has many symptoms, or take lots of medications that can cause lots of issues, or pain that on some days can be relentless. No matter how you try and slice the pie on a chronic illness, that thought of it being "temporary" flies out the door, and you realize that forever more your normal no longer exists. I have attempted to try and create a new kind of normal day. Yet, there is nothing normal about my days for the most part. If I am not fatigued horribly, where I must push myself to do my errands, do things around the house and exercise it is unusual. Don't get me wrong, not every day of my life is dreadful. When I am out of a flare, which sometimes goes for even months, the fatigue and tiredness, the headaches, the joint pain, and the rest of my symptoms are "minor" compared to a flare. I can get myself going fairly easily, but now it takes me much longer to get ready than it used to. Just a few years back, I could be up, showered, dressed, makeup and hair done, no more time than an hour if I was going somewhere special, less if I was just going to town shopping. Now that has turned into more like 2 hours. Plus that does not often include putting on makeup, or really dressing up somewhere to go to like the Casino. That takes at least three hours, if not more. I usually have everything laid out, jewelry and all for the next morning, if we are going very early like usual. I have learned to get as much ready the night before. Even then it takes me at least 2 1/2 hours to get everything on and fixed! I have slowed to a snail's pace when it comes to all kind of things. Buying a large bill of groceries takes me twice as long as it used to. Of course now I coupon a great deal more then back then, but still an hour or less trip now once again is more like 2 to 3 hours. Whatever it was from cooking, to shopping, to cleaning the house, it takes me twice as long. I used to believe it was because I was lazy, or had gotten incompetent, but no, it is just that I do not get around as quickly. My body and my brain work more slowly than they used to. It takes me much longer and it is much more difficult to make decisions. I used to be able to not give something much thought, and I just did it. I did not have to contemplate over some minor ordeal, but just do whatever it was or was not and go about my way. But, even what to eat for dinner, or what to watch at night on television turns into a major item to decide upon. Chronic Illness for me is like the song "Running On Empty"... you feel you are always running on empty and also running behind. Every day of my life feels as if I am playing "catch-up" with myself or whatever I am supposed to be doing. I feel like I have had 5 years of my life on hold, and now I am trying to get back to where I was, before I fell so far behind my own life. There are days my mind may be running a million miles an hour, enough to make more people dizzy, yet it is like riding a stationary bike, or running in place, all of that brain moving gets me no where. I have just about learned, or more like found it easier to just say "I don't care", what I eat, what I watch, where we go, or when we do... just whatever suits the other person... and so forth. It is much too taxing on my body and mind to make so many decisions, thus it is much easier to let someone else lead and I follow. Yet, that gets frustrating because I find that I really DID want to choose at times, thus I am upset with myself that I did not make the effort to do so. So, normality is just not there. Not if you are thinking about your life before chronic illness. It will NEVER be back to that normal. That is sometimes very difficult to deal with and accept. Honestly, for many of us, I think we never truly accept that our forms of normal days and normal lives have past us by. We had a short ride on that carousel, the fall led us down the hill, that landslide we were not expecting, and now we have had to climb back up that steep hill, with the rocks and gravel stinging into our knees as we make our way back up, sliding back a few inches and then making a few inches further up that steep and lengthy mountain. Coping, handling, mentally trying to not give up is yet another issue we deal with frequently.
I go through days, weeks, even possibly months, that I "deal" with the illnesses. I cope with all of the medications, I do not get all that stressed over pain, and in a general context, I seem very able to cope mentally with the issues that lie in front of me. Yet, deep within our souls, all too often, we feel as if we cannot take another day of illness, pain, medications, of not feeling like ourselves. We put on a good show. Sometimes in that 4th act, scene 10 though, we are breaking down, within and then without. I find myself crying in my car, and wondering why. I find myself beating the steer wheel, parked at Wal-greens wondering why I do this anymore. We look for the "good" reasons we "stay" here, rather than drive right out to our nearest bridge and jump off. At times that feels like a much better plan, than closing our eyes, and having to open them the next morning. When you know it will just be more of the same, or what is worse, is that it could be much worse, and not the same, so you have to within find some kind of synergy and opt for taking the high road rather than succumbing to the low road, which would be that selfish way out. Yet, we feel that getting out of this life, would make it easier on our friends and family. The "burden" we give them would be lifted. I often want to play the blame game, and I do it well. I think back to my late 20's and early 30's. I think back t some of the things I did back then, like getting my first tattoo, or going out to the bars with my friends, even single. I want to think maybe there was something I did back in those years that I am being punished for. Did I not take good enough care of my kids, family, home, job? Did I not do "something" right, thus here I am at 50 being "mutilated" in physical and mental ways due to some horrid thing I did back then? Often you hear people say that we shall pay for our mistakes later in life. So, when something like these illnesses, extremely chronic and more often than not incurable, we tend to feel we have been wrong or wronged someone else in our past, thus now the "judgement" is upon us for all of ways we were foolish back then. When I look in the mirror, and I do not see the person I was just a few years ago. I see the way the illnesses have pulled me down, to be a slower, older, and it seems weaker version of whom I used to be, how can I not feel as if something I did, or did NOT do has caused this horrible scene in my life. One that is not something to turn away from. You cannot run from Lupus, you can only run "for" it. You cannot "cure" RA at this time, but you can hopefully "put it into remission" with the right medications, or slow down its progression of damage.Yet, trying to convince your inner self to think you in some way are not totally responsible for this horrendous grief of pain, fatigue, never ending changes in medications, in your own body, your mind, hell... your spirit. It effects every single thing in your life, whether it is relationships, with yourself or someone else, or simply the way you leave the house now. Used to I would get take a shower, get dressed, do my hair. and hit the door. Now days, depending how long I will be out, I have to make sure I have my "PTM" which is the device for my pain pump with me, medications, for my stomach, for pain, sun screen, or may I say sun block, even in the CAR! The sun will blister my cheeks now just coming through the windshield. I have to make sure I have worn the "right" shoes depending on how long I may have to walk. My "emergency" bracelet so people would know about my health issues if something were to happen to me. I also have to carry cards in my bill fold that tell about my pain pump and my metal knees and right shoulder. All of the above keep me from having an MRI of any kind. The list seems to never stop. Then, if I am going away overnight, Lord forbid. Then it is another realm of "stuff" that must go with me. Mainly all of my medications, but there are other things I carry now, that I may not have carried if I were not chronically ill. In fact, to date, since I was diagnosed with Lupus, RA, and so forth, other than overnight, I have not been gone from the house on any type of vacation. We go for the day or for one night to the Casino in OK, and we have not even done that lately due to my own battle with illness and then my Mom's also having some issues. Weather held us up at Christmas. Then New Years was not much better. By the time my birthday rolled around in mid-February, I will ill with the "flu" like stuff that has brought on an entirely new set of doctors and tests. Honestly, I think my PCP maybe onto what is going on with the fatigue, the pain, etc. than the rest that have ran endless tests. He did a special blood test that found something that happens with my muscles which can deteriorate them. As that happens it creates a substance in the blood that cannot pass through the kidneys correctly. It kinds of "clogs" them up, which can cause acute kidney failure if not handled correctly. He, of all doctors, LISTENS, to me, he knows my case very well, and he knows exactly what to look for. Some of my doctors are fairly well educated about all of my complicated things, but he tends to be able to "look" for what is out of the normal when it comes to me, and what maybe wrong with me. Usually, he is right. So, each and every thing in your life seems totally different. We are all used to change. "Change" per se' is not necessarily a bad thing. But, when you talking about the kind of change as in an illness, especially something "chronic" that you know shall be with you the rest of your life, it is not an easy thing to accept, nor deal with even as the years pass by. It is almost as if you are always in the process of grieving. You grieve your lost life. You grieve for the lost person that you no longer see in the mirror. You are in a constant state of guilt, anger, sadness, resentment, jealousy, sometimes almost rage, & sometimes you find acceptance. But, it seems that portion, the acceptance, comes in tiny pieces that come and go more often than you care to talk about. Oh, I can put on a good show for those around me. I can act as if things are okay. I can put on a smile, half way, act like things are not that bad, and play the part when I need to. Yet, anyone that knows me very well, can see through that mask of the challenge of trying to "look" well, and act as if I am not ill. There is nothing easy about this crap, not one thing. I could make it "easier". I could admit and give in to the illness. I could throw up my minds, decide to allow the pain, the fatigue, the brain fog, the slowness, all of the daily symptoms that plague me to take over. I could lie on the sofa more. I could go out less, keep house less, cook even less (since it seems Jim certainly cooks more than I do), and the list goes on. I could do just the very bare minimum to keep the house straight, and he would certainly help to do the rest, even more than he does now, but, there is no way I could do him that way. Plus, I cannot do my own self that way. I can say the on occasion, not all the time, but there are times, when I am just having a really bad few days with this mess, that my Mom's stuff seems to almost be too much. Not very often at all, but if I am already having my own health issues, and let's say we have several issues at home I am having to deal with, then I have to also deal with all of her things at once, I can sometimes feel I am totally on overload and I am overloaded. I hate to even admit that because a huge portion of why I am even back in TX is to help her. But, before making the decision to come back, I was not dealing with all of these health issues. I had a few, but they were not as it is now at all. Thus, when we made the decision to move back and help her, little did I know I at times would barely be able to take care of myself, much less deal with the rest of the drama that has unfolded as I have lived here now for 7 or over years.
Thus all of the above, that you must deal with daily, yet you truly never know what that "daily" might be like when you open your eyes, on some days makes you wish you could step off the planet, and float off to wherever the place of no pain, no sorrow, no illness, no drama is. Now that does not mean I am totally suicidal, or thinking about harming myself. Yet, you do want to at times, leave all of this crap behind. We tend to dwell in that place of knowing the someday all of this WILL be over, and more than likely though it will NOT be here by any medication or physician. There is no magical cures here. Someday, I pray they will figure these autoimmune illnesses, along with many others out. When they do the will be able to "fix" those genetic issues, or cell issues, well before a symptom arises. Or for those with these illnesses, the medications will cure it all, or they will be able to "immunize" you to keep you from having these illnesses.
I don't see it happening in my life. or not even in my kids lives, possibly my great grandchildren may have a grasp of those things. For now, I just pray that my kids, and their kids remain without signs or symptoms of any of this mess.
So, yes we are never "Normal".... an Yes, I Cope, but it is not an easy thing, and there are days that coping is just not there, thus you give into it. Those are they days I am on the sofa with my two puppies, watching Lifetime Movies all day, and praying that this will go the hell away....

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