BE HONEST

I wrote this on June 10, 2004

At this moment I don't want my family and friends to see me, because I do not think they would understand. I grieve for my previous identity. The person who had a career, enjoyed working with people and helping people. The person who came home, shared their day, listened to family and tried to make things easier for them. The woman who had the energy to take her Mother out for a drive, get lost and pretend it was simply a tour of the city. I have never had a sense of direction. I could deal with some deficiencies, now they have multiplied. At this time, I can't bring myself to dream about those times. It takes too much energy. I know it is not right but at times I feel I cannot keep hiding this feeling of failing. Failing in many ways.

I was trying to have a career, be a Wife, Mother, Daughter, Sister, Friend, co-worker. Was that too much? Are we as individual’s trying to do too much? I ask myself that question on different occasions. Was I trying to do too many things? Well, I do not believe I am the only person that is trying to accomplish a number of things. Is anyone really able to do all those things? Be honest. Can you? I know I was stopped by this miserable illness. I enjoy the stimulation of friends, colleagues and family ties. This fatigue keeps me from enjoying it and also reminds me to value those times. I do value my time with my family and friends. I am grateful for those special occasions.

Life carries on and on....so what can you do to make it better? Life carries on, yet the person I grieve still taps in on my mind... on a daily, weekly, sometimes just monthly or semi-monthly basis. I am grateful I am not haunted too often. I have never been a very good nurse, I don't like to hear people whine. Thank goodness my boys are not complainers. Although, I have caught myself whimpering and grumbling when I am alone or even writing this book. Hello? What am I doing? I believe your attitude has a lot to do with how you feel. Or so....I believed. There are days I fight hard to keep a good attitude. Something within me has created this compulsion to feel that it is my job to make people smile and be happy. How can I do that when I am not happy? I need to recognize that we can not be happy all of the time. We are all in control of our emotions and we alone can change or allow others to change our emotions. Take charge of your emotions. That is my lesson for the day.

Folding towels in bed for short periods of time makes me fatigue, what makes me think I can work? I do grieve. I am not perfect. I know people claim to always have a great attitude, they have their bad days too. We have to admit it and move forward. I place too much pressure on myself to be in a great mood, and have an unending faith that I will endure. Cheers to those that have made it and beat it. I still have trouble with it. I admit I still have trouble with it. I am after all human.

I keep grieving though people tell me you are not your work. The jobs we end up with are an extension of ourselves. It is one of many ways to express ourselves. Do you not act like yourself at work? Come on people, be honest. If you are doing something at work that is not an extension of your personal self, then you are robbing yourself. I have never been able to act differently at work. I am who I am, I love people, I enjoy meeting different types of people with different interests in life. I like getting to know people and helping them enhance their strengths.

SHARING, EMBRACING AND RECOGNIZING OURSELVES

Trust me and don't keep your feelings on the inside. Why? You will soon lock yourself out and away from people. The people you know and love. I have to remind myself I am not alone. The truth is I am not alone but I do grieve the energy, drive and passion I once had. I will be alright, yet I still grieve. Smiling enables us to feel joy and forget our troubles, if only for a moment. I am going to give it up pretending for a little while. I need that time to grieve and to let go of these sad feelings. How can we do this without our family and friends reacting and feeling sorry for us? I don’t want that. I want to grieve, I want to be sad and then get over it. I know there isn't a place I can hide this sadness or show it, except within myself. I know that feeling, that feeling of sadness. Yet I can only express it in my dreams or when I am alone. I know others feel it and hide it. Then hopefully they come back in from the cold and regain that smile.

I decided my way to start smiling and feeling better would be to write a section in this journal I am creating. Step away, do your thing, then return to the mirror and see yourself. That individual that once was happy and free of pain. Sometimes you have to back away and fight that horrible sadness. It is not easy to do. It is possible. Do I sound confused, frustrated and overwhelmed? Well, I have been from time to time. However, that has been an experience I learned from and do not regret it because I listened to my instincts and followed my heart. Therefore, being true to myself I just keep reminding myself I am not alone.

STARTING TO THINK ABOUT HOW TO FEEL BETTER

I am here and I will be for a long time. I know there isn't a place I can hide. I know the feeling of alone. Trust me and don't keep those feelings inside. Soon you will feel like you are left out on your own. It is so easy to become a hermit,away from people and every day activities. Just try to remember you are not alone and you have to remind yourself that you are not alone. You are not alone.

If God would send his Angels, would everything be alright? Some days I don't know the answer to that. Dare I share those feelings with my family? No. I have to be strong and keep them believing that we are dealt the cards we can handle. Jesus has never let me down, yet some days I feel let down or left out. Which is it? Where is that faith I try so hard to hold on to? I've got to remember that God is there and his Angels are here to help me, help us. I don't want to lie to my family and I don't want to fool myself. Are we fooling ourselves? I wonder. Yes, I do sometimes wonder. Is it that I am wondering? Or is it that I am loosing that faith? Which is it? I can't simply stop thinking about this at times. But I am not alone and I am aware of the support I have from my family and friends. However, they don't feel my pain, my fatigue and my thoughts. This illness is uninvited and I want it to go away and let me live my life as an individual that made a difference in this lifetime, who provided guidance and empowered people to find their gifts.

I need a moment to let down my guard in front of someone, but who can I do this with without making them feel sorry for me or pity me. Without causing pain. Yet this is what I feel and tell myself everyday....when everything seems like a struggle, remember your faith and never forget there is a God. We are in this world for a reason and we touch so many lives, hearts, souls without a true awareness of our own contributions.

I feel blessed to have a wonderful soul mate as a husband and three beautiful children I am very proud of. I do not want to be a burden to my family financially. I do not want them to end up as my custodian. It does take so much out of you to have to ask for help. Why is it easier to help others than to ask for help? After all I live my life by “what goes around comes around,” so why is it so hard to ask for help?

I don't want to hurt my family, I just want them to know and remember the person I was. I once brought up how picky I was about the house and wanted it spotless and how I used to cook three meals a day and have dessert. Nobody remembered. Do you know how much that hurt? Maybe it meant nothing to them, but it meant so much to me. I now rely on my husband to clean. When I do clean, I end up in bed with yet another flare-up. Pacing. I hate pacing. That was not a word in my vocabulary. Pacing is now forced on me.

I remind myself to not let any sudden feelings of self-doubt dampen any fun, these feelings are only temporary. Temporary? My illness has not been temporary. I am waiting for that so called remission. I lied about how I felt...and told my doctor, family and friends I was in remission. I tried to convince myself I was in remission. I know how to influence people. I have the ability to convince others to feel better, recognize their strengths, improve, excel, heal and alter their mindset. Somehow I cannot help myself. Why is that? Maybe I need someone like myself in my life. Someone that convinces me that I have that mind over matter power to go into remission.

Sometimes I concentrate on my own domestic space, spend time cleaning, organizing or spend quality time with my loves ones. By the end of the day I am in extreme pain and very fatigued. Was it worth it? Yes. However, is it too much to ask for a full day of no pain or fatigue? Maybe, maybe not.


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