Is it Really Possible to Accept Chronic Illness?

The million dollar question of the day. How do you learn to accept that you will be chronically ill for the rest of your life? Boy, that is a good question and I wonder if anyone really has the answer to it. It is a constant struggle. Let me explain.

When you think of getting ill, and I am talking of a majority of the population the somewhat healthy people of the world. Here is how it goes. You get a cold or the flu, you complain about it because you are laid up for a week to ten days. If you do not get better you call your doctor or go to Urgent Care because you may need a dose of antibiotics to scare those little bacteria out of your blood stream. Lucky for you it is more of a nuisance than anything else. What happens when you get sick, you go to doctor after doctor, for months after months, and either finally reach a diagnosis or sometimes no diagnosis. You hear time and time again, it may be this or it may be that we are not real sure, but we do know something is wrong but there are just so many things it could be. Or when you do get a  definate diagnosis you hear, "Lets start you on these meds and have you come back in three months and we will see how things are going." How do you deal with that? A diagnosis or not, a prescription or not, and a kick out the door. Now you are left in a sea of unanswered questions. Your head is swimming in a million directions, you still feel awful physially, and you are alone. Oh there are loved ones there, you are surrounded by them, but I am talking you are alone in your own battle of trying to make sense of what you have just been through. It is hard work physically because you do not feel well, but the emotional work is even harder and almost unbearable to deal with. The trying to understand and accept that life as you know it has changed, while all you want is to have your old life back. Free of all of this.

I have had over twenty years of this with the past five being the most brutal. I don't know how in the past year I have finally come to my acceptance, it sure hasn't been easy. I did a lot of soul searching, a lot of crying, a lot of questioning, a lot of reading, a lot of support groups, a lot of screaming "this isn't fair," a lot of I don't want this, and on and on and on. Yes this has been a long, emotional journey, to get here, and to be truthful even though I say I accept this as my life, I still do not want it to be my life. I am finally able to say at least I have some kind of a peace. I have tried for the past five years to get back to the way life use to be but every time I try to I end up getting very ill so I have just learned to question everything I do. Is it worth what will happen tomorrow? Many time the answer is no, so I just find something else I enjoy doing instead. Your life becomes a give and take Illness has become my life. I don't like it, I don't want it, but it is what it is, I can't change that so therefore I must accept it. The emotional journey to here has taken its toll. I have lost friends, I have made new friends, and I have cut some people out of my life but I can say my life has become much richer and better because of illness. I have learned to enjoy new things in my life. I love to paint now where before I would have thought I don't have time for that. I have learned that I make a very good friend to myself. In fact I carry on conversations with myself out loud all the time, the best part is I am always right! We all, meaning anyone dealing with chronic illness, must find what works for us and not worry about what the world thinks. Find the new you! It takes a long time to get there and it is not easy, but when you get there it is almost freeing and worth the journey. Of course if you are in the beginning stages of your journey I can imagine you want to punch me in the face right now. I know I wanted to punch a lot of people when I first got sick. I wanted to yell at them and tell them they just didn't understand. They didn't and now I get that, finally. All they wanted was for me to be better, that's all. They never meant any harm with their comments. It is like the world when you think about it. When someone gets sick we are all fixers. We all just want everyone to be happy or better and when that doesn't happen fast we don't like it. That is when you find out who really does care and love you through the long haul! Simple and it makes sense.

Accepting or just learning to live with illness means many thing to each and every person. What works for me, might not work for you or what one person does in their journey may not work in your journey. So you see, it is up to you, and only you, to figure out the "new" you! It can be very lonely, scary, and sad for you, but it has to be done! Take all the time you need to get to that place. It is hard but try to enjoy the journey. Even though it is a journey you do not really want to take, it is one that has been forced upon you and you must take. You can't run from it, even as much as you want to, you just can't because your body will be right there to remind you that it is in control. It is so much easier not to argue with your body and to use your mind because you know what? You are not going to win sometimes. Plain and simple.Try, as hard as it may be, to keep positive. It isn't easy, I know. Yesterday I had a terrible day, I was sad, I hurt, I just didn't care. But then I kept telling myself it will get better and by last night it did. It always does!

When things seem bad and you think you just can't do this, tell yourself, yes I can! YES I CAN! YES I CAN! Over time you will learn to control your illness and not allow your illness to control you. It does not happen over night so allow yourself the time you need to go through your journey. After all it is your journey and no one else's! You can do it, what other choice do you have? Then one day, maybe a long way off, but one day, you will realize your journey has happened for a reason and that reason is to help others get through their roughest, darkest times the same way you did it, ONE DAY AT A TIME, ONE MINUTE AT A TIME, ONE SECOND AT A TIME! If all else fails, message me!!

May God Bless you as you accept whatever you must face!

Dianne

It Never Seems to Stop

When I read what I wrote for the title of this post I think to myself, it really never does stop. For me it is the illness, for others it is their illness,  financial trouble, child rearing troubles, for others it is a loss of someone dear to them. It seems there is always something you hear or read each and everyday of the suffering going on in the world.

As we move on in life we never know what each day is going to bring. We may wake up feeling well and wham we are hit with some physical pain that turns our day from good to bad in an instant. For others it is a phone call that changes everything that they thought was safe and real into a nightmare. For others it may be the loss of a job they thought was secure. It seems nothing in this world is secure or a sure thing. I don't think times have changed I think it has always been like this. One tragedy after another, but for what, I wonder?

So as I think about life, after a rough night of horrible pain , I am once again focused on my faith more than usual. Don't get me wrong, my faith is always at the forefront of all my days, but when I am in this type of pain it makes me think and lean on God even more. I question everything. I go over and over in my mind and I ask why? I am tired and exhausted from hurting so bad and I just want to feel better. But then I think of the cross. I think of the pain Jesus went through to make way for me to have a life in heaven someday, free of pain, drugs, and worry. I think of others who are suffering in other ways that are unfair and I think of that cross. Without the peace of something bigger than ourselves I do not know how it is possible, at least for me, to get through all of this, and I hope for you too. I am reminded my pain is nothing compared to what some others must endure.

Even as I wonder why it never stops I keep my faith and I push on. I hope and pray, for myself and others, for better days and take what I get each day. Some good, some bad, and some that are really ugly. I pray for strength to get through all the struggles, all the while knowing I am surrounded by love, not only from my family, but from something bigger than anything possible here on earth. For that I am thankful!

May God Bless Your Day!

Dianne

Positives vs Negatives

Over the past few years it seems the negative in this world outweighs the positive. It seems every time I do venture out in the world, which isn't often, I hear people complaining and so much sadness. I wonder when this shift began? It doesn't seem like it was after 9/11 because I remember seeing a nation come together out of love for the thousands of lives lost and lives affected by that terrible tragedy. It just seems to me as time went on people became more selfish and bitter and started regressing into themselves more. I would imagine all the technology doesn't help either. Nowadays we are not forced to talk to one another because of all the conveniences we have available to just send a text or write an e-mail, I am guilty too, I have grown to dislike the phone and avoid it at all costs. So I always think, day to day as we pull away from each other, how can I try to stay positive when there is so much negative? It is all in the way I think about what ever situation I am in at any given time.

Some examples of my positive thinking are :

-Today I woke up with a searing headache in the spot where my migraines usually start. It would have been so easy for me to think oh great a migraine I am going to stay in bed and have to deal with this all day. My way of thinking is get your fat you know whatus out of bed go take some meds, drink some coffee and do something to take your mind off the start of the pain. Hence, the reason I am here. Writing is like therapy for me in case you haven't noticed from my past posts.

-I often sit at home thinking of others being able to work, who complain about having a job, which can make me very angry and negative. My positive way of thinking is, I have lots of leisure time to do all the things others wish they could do. I am very fortunate. Plus, I get to spend quality time with my grandchildren, something many only dream of.

-I often get very angry and negative with my doctors or other doctors when they don't have answers for me or the people I love. The positive way for me to think of this is two fold. I have become friends with a few of my doctors whom I am grateful for. I have learned that not all doctors are evil or mean and I am blessed to have a few good ones who respect me and know that I am a smart, informed patient. I have learned and try to remember doctors are people too and not know it all's. The second thing I have learned and feel blessed about is to be able to help others when they are struggling through illness or with dealing with doctors, which brings me great joy.

-There are the days I don't care to go on, the days I am so tired and negative. I still live my life and believe, in a positive manner, there is a reason why I am here. Then it seems the same day I am down I will have someone write me a message, or stop over and ahahhh the reason I got out of bed today makes perfect sense because I have helped someone else or someone has done something nice for me.

-One of the hardest things for me is that I have lost the ability to have a social life. It is just plain hard to go out and socialize when your body is constantly processing pain, or my eyes are not working properly, or I am weak, etc. So I have learned to make the best of what I am able to do. Maybe now Rich and I are just able to go out to dinner but at least I am able to do that. Or we sit and watch certain tv shows and discuss it in between commercials. Life has become simple for me, for us, but good. You see chronic illness has brought us even closer together instead of tearing us farther apart. Huge positive!

I could go on forever but I think you get the picture. In ending this, the last thing I will write is the most positive thing of all. Knowing the close relationships I have with the people I love and the people who love me. What more could anyone ever want? For me that is enough and I am  truly blessed! Now, go out there and make the world, your world, a better place. You never know what is going to happen tomorrow so enjoy and make today positive. Even if it is starting with a headache!

God Bless!

Dianne

The Five Stages of Grief and Loss by Elisabeth Kubler-Ross & David Kessler

The Five Stages of Grief

David Kessler & Elisabeth Kübler- Ross working on the five stages of grief On Grief and Grieving is Elisabeth Kübler-Ross’s final legacy, one that brings her life’s work profoundly full circle. On Death and Dying began as a theoretical book, an interdisciplinary study of our fear of death and our inevitable acceptance of it. It introduced the world to the now-famous five stages: denial, anger, bargaining, depression and acceptance. On Grief and Grieving applies these stages to the process of grieving and weaves together theory, inspiration and practical advice, all based on Kübler-Ross and Kessler’s professional and personal experiences.

Elisabeth Kübler-Ross & David Kessler Denial, Anger, Bargaining, Depression and Acceptance The stages have evolved since their introduction and they have been very misunderstood over the past three decades. They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss as there is no typical loss. Our grief is as individual as our lives. The five stages, denial, anger, bargaining, depression and acceptance are a part of the framework that makes up our learning to live with the one we lost. They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief. Not everyone goes through all of them or in a prescribed order. Our hope is that with these stages comes the knowledge of grief ’s terrain, making us better equipped to cope with life and loss. Denial This first stage of grieving helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. We wonder how we can go on, if we can go on, why we should go on. We try to find a way to simply get through each day. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle. As you accept the reality of the loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade. But as you proceed, all the feelings you were denying begin to surface. Anger Anger is a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal. There are many other emotions under the anger and you will get to them in time, but anger is the emotion we are most used to managing. The truth is that anger has no limits. It can extend not only to your friends, the doctors, your family, yourself and your loved one who died, but also to God. You may ask, “Where is God in this? Underneath anger is pain, your pain. It is natural to feel deserted and abandoned, but we live in a society that fears anger. Anger is strength and it can be an anchor, giving temporary structure to the nothingness of loss. At first grief feels like being lost at sea: no connection to anything. Then you get angry at someone, maybe a person who didn’t attend the funeral, maybe a person who isn’t around, maybe a person who is different now that your loved one has died. Suddenly you have a structure – - your anger toward them. The anger becomes a bridge over the open sea, a connection from you to them. It is something to hold onto; and a connection made from the strength of anger feels better than nothing.We usually know more about suppressing anger than feeling it. The anger is just another indication of the intensity of your love. Bargaining Before a loss, it seems like you will do anything if only your loved one would be spared. “Please God, ” you bargain, “I will never be angry at my wife again if you’ll just let her live.” After a loss, bargaining may take the form of a temporary truce. “What if I devote the rest of my life to helping others. Then can I wake up and realize this has all been a bad dream?” We become lost in a maze of “If only…” or “What if…” statements. We want life returned to what is was; we want our loved one restored. We want to go back in time: find the tumor sooner, recognize the illness more quickly, stop the accident from happening…if only, if only, if only. Guilt is often bargaining’s companion. The “if onlys” cause us to find fault in ourselves and what we “think” we could have done differently. We may even bargain with the pain. We will do anything not to feel the pain of this loss. We remain in the past, trying to negotiate our way out of the hurt. People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We do not enter and leave each individual stage in a linear fashion. We may feel one, then another and back again to the first one. Depression After bargaining, our attention moves squarely into the present. Empty feelings present themselves, and grief enters our lives on a deeper level, deeper than we ever imagined. This depressive stage feels as though it will last forever. It’s important to understand that this depression is not a sign of mental illness. It is the appropriate response to a great loss. We withdraw from life, left in a fog of intense sadness, wondering, perhaps, if there is any point in going on alone? Why go on at all? Depression after a loss is too often seen as unnatural: a state to be fixed, something to snap out of. The first question to ask yourself is whether or not the situation you’re in is actually depressing. The loss of a loved one is a very depressing situation, and depression is a normal and appropriate response. To not experience depression after a loved one dies would be unusual. When a loss fully settles in your soul, the realization that your loved one didn’t get better this time and is not coming back is understandably depressing. If grief is a process of healing, then depression is one of the many necessary steps along the way. Acceptance Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This is not the case. Most people don’t ever feel OK or all right about the loss of a loved one. This stage is about accepting the reality that our loved one is physically gone and recognizing that this new reality is the permanent reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is the new norm with which we must learn to live. We must try to live now in a world where our loved one is missing. In resisting this new norm, at first many people want to maintain life as it was before a loved one died. In time, through bits and pieces of acceptance, however, we see that we cannot maintain the past intact. It has been forever changed and we must readjust. We must learn to reorganize roles, re-assign them to others or take them on ourselves. Finding acceptance may be just having more good days than bad ones. As we begin to live again and enjoy our life, we often feel that in doing so, we are betraying our loved one. We can never replace what has been lost, but we can make new connections, new meaningful relationships, new inter-dependencies. Instead of denying our feelings, we listen to our needs; we move, we change, we grow, we evolve. We may start to reach out to others and become involved in their lives. We invest in our friendships and in our relationship with ourselves. We begin to live again, but we cannot do so until we have given grief its time.

The Day Your World Changes Forever

I don't know exactly when it happened I just know it did. I remember being a vibrant person, someone who could do anything she wanted, and did. I remember being able to keep up with my kids and the world that was going on around me. Then all of the sudden in the snap of a finger it all changed.

Getting out of bed became a nightmare from the pain and stiffness. My body was now in charge of my life instead of my head, not an easy thing to accept. As this happens you go through many emotional stages, trying to reach the one of acceptance. Although I believe now that I am in the acceptance phase I still do not believe I will truly ever accept this as my fate, but for now I do, and I am at some sort of peace with it all. I have finally realized I cannot be everything to everyone anymore. Now, my time and energy are spent on making it through each given day and making it the best of it for me, not others. Very hard for me but once I accepted it, it became easier for me.

I am back to the place of where I was in the beginning phase of my illness helping Rich deal with his emotions. It seems so easy, all the things I talk with him about, but for him he is in the hell stage. The why me stage. The how can my life change so fast stage. The I just want to feel better stage. The whole trying to process it all stage. You don't understand when you are healthy, and things are going fine, just how much energy it takes your body to work in harmony. Then, when you are hit with an illness, your world stops. All you can focus on, or care about, is getting back to the way things were. Your world stops, literally! Sadly, sometimes it isn't possible to get back to normal and you must work through all the emotions to get to the place where you accept this is what life will be for you. You don't like it, you don't want it, but it is what it is.

I pray each day for many people who are in this stage. The new life stage of thinking, I have to live like this for the rest of my life?" Questioning everything in your life. It is not fun at all. It is so easy to isolate yourself from the world because when people are healthy they really do not know how to handle illness. They say stupid things, they tell you it will get better, when all the while they have absolutely no idea what they are talking about. If there is one lesson I have learned it is do not tell people they will get better! Let them be where they are. Their feelings are true, and they are their feelings not yours, just shut up. Let them feel whatever they feel. Don't give advice because although you say or think to yourself, I would never do that, you really truly do not know what you would do if you were in the same situation. So just shut up and love. I have learned this is hard for people who have never had a serious illness hit them. I always say to Rich, it is funny when someone gets sick and want to know what I think about it when before they really could have cared less. It always makes me chuckle for some reason. Don't get me wrong I don't mind people asking it just makes me wonder why they never cared about me, or Rich for that matter, until it is them. Curious!

So for now, for me, for Rich, for all those who are ill or suffering through serious illness. Do not think of it as a curse but as a blessing. Even though you think it is all bad, it really isn't. Life will change but many times for the better. It took me over four years, four very lllooonnnggg years to realize my life is better because of illness. I don't want it but I have learned to value what really matters to me and for that I am grateful!

God Bless You All!

Dianne

These Are The Days

Oh yes, these are the days, and today is one of them for me. If you are chronically ill you know what I am talking about. You are awaken in an instant by pain and you just know this is not a good way to start your day. This morning at 5am I was woke up with searing pain in my neck and the start of a migraine. I must have had the migraine in my sleep because I woke up remembering that I was taking Excedrin Migraine in my dream to hopefully relieve the pain before I had to turn to the hard stuff to get rid of it. So when I did actually wake up I laid there lazily thinking I should grab that bottle and take two now. As I laid there the thoughts of not being able to grab the bottle or it flying on the floor rushed through my head. I decided to the plunge and grabbed it anyways, with good results I might add. Ahhhh, pills down the hatch. So, I laid there praying it helps the headache and the stiff neck.

As I laid there I thought to myself, self, get up and get a cup of coffee, which many times helps ward off the migraine before it becomes a nightmare. As I got out of bed, AHHhhhhhh, the pain of stiffness hits. The past few weeks my pain and stiffness have been worse as the drug company that makes my meds has decided not make manufacture it for now. I am waiting for it to become available, but in the meantime I am suffering more. At the same time I am trying to cut back on the steroids, that help with my pain, because they cause me to want to kill someone. The bad part is the steroids also help keep my migraines away when I am on the higher dose of them. It is such a give and take with the meds and chronic illness. Getting back to my head, I made my coffee and guzzled it down and must say I am feeling somewhat better. I still have the headache but I can tell it is one that I may be able to live with today. I hope!  For now I think myself into the positive thoughts to try to ward this off as my neck is killing me.

My point is that we all have our days. You know the good, the bad, and the ugly. It is all in your attitude. Although I will not argue that when you are in the bad it is awful hard to have a good attitude because pain and illness can take over all the good thoughts you might intend to have on any given day. When those days hit you tell yourself there is always tomorrow, or tomorrow WILL be better, or next week will be better. The real point is if you do not have an attitude of, "things will get better" there would be no point to all the suffering you must endure. Everything that happens to us, happens to us for a reason. It is up to us to find that reason. Of course many times it takes years to figure out the why but you can  never stop trying to find the reason.

Now, go on and live my faithful friend, and if today isn't your day, then maybe tomorrow will be. That is what I am hoping. If I can do it, so can you!

God Bless You All!

Dianne

I Don't Understand Why We Have to Suffer

As I write this post I have been thinking to myself this morning about how far I have come. When I think back I realize I have been feeling much better than I use to even though I do not feel like I am that much better. I still get extremely fatigued, weak, have painful days and have to rest, but when I am truthful with myself and I look back I am doing so much better than I was. I am thankful for that as the roles for Rich and I have changed a little bit over this past month. Funny how the roles change at just the right time. If this was even a year ago I would never have been able to care for Rich and do what I have been doing around here. God is good!

Rich hasn't been feeling well so now I care for him like he has so selflessly cared for me over the past five years. I think this is my sign from God showing me just how much progress I have made over the years. I have come to accept that this IS who I am now and realize this IS me and I just have to be happy with what I am able to do on any given day. If it is just one load of laundry that is okay. If it is clean the whole house and pay for it the next day, that is fine to. Before this acceptance phase I would have cried about how unfair it all is but now it is just a good feeling, almost like I can just say to myself, no worries. I like that attitude, no worries! Besides all the stuff that has to be done will be there for me tomorrow or whenever I am able to do it so why get all sad about it. I am learning to enjoy each moment of the day instead of thinking so far ahead. I can now look out the window and instead of crying because I can't do the yard work I can look out there and see the beauty of a bird or the leaves blowing off the trees. What a great place for me to be!

I still do not understand why we have to suffer. I do not understand why now I have to watch my husband suffer as I did. I do know this, he has the best person to help him through it because I have been there. I can identify with all his emotions and what is going on with him. I love that he tells me the only place he feels the best is when he is with me. So you see, my getting ill does have meaning and a reason. It is all beginning to make more and more sense to me as far as the caring for others part in being ill. If we do not care for one another than what do we have?  Maybe some have a lot of material things that just collect dust and someday will turn to dust. To have true and powerful love for others is a rare gift, and the best gift life has to offer. I always think to myself, you can have all the stuff in the world but when you die and leave the ones you love behind, the piece of yourself you leave is so much more powerful than the material things you leave. Yes, it is nice to have a special ring or other item to remember someone by, but it really is the two souls connecting and the love left behind that is really the gift.

As I see what goes on around me I do not see many in my circle who have that true inner peace. Maybe I am able to think deeper now and I wonder if any of us really get a 100% total peace. I think we all must come to realize, and we do the older we get, that life isn't about what you possess, it is about people and loving those who are put in your life. That being said, there are still those who are in our life who are unable to see things the way we do and sometimes we must not allow them into our lives. We can love but when people think that we owe them and suck the life out of us we must remove ourselves from that poison, no matter who that person is. In order to be happy you must choose what makes YOU happy not what others think you should choose just to make THEM happy. I have learned you cannot give, give, give and get nothing back in return. Such relationships are toxic and you must decide what is right for you! One way you can decipher this is when you are talking to someone and they ask about you does the conversation change back to them or are they really listening and caring about you? Is the talk always about them? Do they really care about you?

So we march on in this world. We suffer. We love. We care for others and sometimes we cut others loose. We do the best we can and sometimes we just don't understand and that is okay too. Lean on God and the good people in your life who love and support you.

God Bless!

Dianne