Good Evening My Friends, it has been a while as I have been very ill, another setback.

I try to wake up each day with a theme so that I have something positive to focus on no matter what the day may bring. I practice what is called “being in the present moment.”  It really works and I want to share it with you.

Everyday is so very difficult on me with the pain. I am not complaining about where I am on my journey. I just need to paint a picture with words every day so you can be in the moment with me. Otherwise you read more as a detached spectator.  I want you to be a participator. That is the only way you can get as close to being in there with me as we can get. So bear with me each day as I paint my day with words so that you can come inside and really visit me, feel, touch and hopefully take away some sense of “going through” a part of what I am feeling and going through. It truly is a good way to pass verbal communication and get as close to the experience as you can without being the experience.

I wake up and as I have said take my medications so that I can actually get up. What a horrid feeling to wake up every day with pain, sweating, burning up, your heart irregular and beating very fast, which of course affects your breathing. Then trying to get up when your equilibrium and coordination are not within your control. I really can not do justice in my description of what waking up is like other than not waking up would be better. Never in all my life could I in my wildest imagination think anyone could wake up with so much happening that is outside of your control and could be very paralyzing if you didn’t learn how to have faith and determination through years of teaching ones self how to hold on just for the sake of holding on.  As I write this I truly can not believe I wake up with all the symptoms I do and to actually know that my day, my life is controlled by taking medications to give me the ability to live through another day.  I am not sure I will ever get use to this as my reality but it is. So then I have my medications set out to take. I make myself get up and go to the kitchen to take them hoping that one day it won’t be such an effort and I will see some improvement. I get up and my feet cramp up twisting inward, my whole foot curls up, my toes cramp in and under each other making walking a task I never thought could be so hard. As my foot touches the floor I feel the pain of walking on cut glass step by step. I am dizzy, my equilibrium is uncontrollable where I walk like I am drunk. I have very little coordination to where I must hold on to something each agonizing step of the way to the kitchen. But I am determined to use my mind to make myself focus on each part of my body, each step telling it what to do. This is part of my therapy that I developed from learning about Sister Kenny who cured Polio when doctors could not using the same techniques as she did. They work it is slow going but I make it so far every day. But I tear up as I keep talking to my body because I remember just a year ago I could walk just fine and how drastic of a change has taken place in just one year. I fight to stay in the present moment when all my feelings want to go to fear that if all this can happen in just one year what lies ahead for me?

This is where I really admire the human spirit because my friends I tell you I truly do not know where I get the ability, the tenacity, whatever it is to keep going on day after day with only faith to hold on to as the years have taken such a toll on my body, my mind and my spirit. Yet something inside keeps on fighting, keeps on believing that I will be an even better Mary-Anne and that I do have a purpose that makes all of this worthwhile. For now though I just feel lucky that I have worked so hard on myself in developing myself into a well adjusted, happy, strong, determined and so full of faith in my belief system that quitting does not even register no matter what comes to my mind when I get to the point I was all this week.

That is why there are no entries for this week. I just was so sick, unable to even dress or go out. I couldn’t cook so I didn’t eat. All I could do was lay and sleep to escape the pain, the sickness and the loss of my will to fight any longer. I was also angry. I am so tired of all of this.

I can go so long and then I hit what I call my threshold to where no matter what I believe, practice or tell myself I am just tired.

There are so many things wrong that when I get so worn down, in so much pain and my fight leaves me I just can not see how getting all of this even under control much less any real answers will come.

I think back to the days when getting out of bed was just a thoughtless routine. I remember how I use to wake up. I always woke up with a smile on my face and would lay there and get thrills in my stomach thinking of my day. I was always so excited to wake up and to face the day. I never needed a reason to get up just being alive and making my day whatever I wanted to was enough for me. I would lay there and go through what I was going to make of my day. I couldn’t wait to get out of bed and make it all happen. Each day was like a dream come true. I don’t know where I got my attitude it was just born in me and I thanked God for it. Lot’s of people wake up irritable and it takes them a while to get oriented and get motivated to face their day but not me. Each day was a delight and I couldn’t stand to go to sleep because I hated missing any part of life. But then I added to my thinking that if I went to sleep the sooner morning would come and my new adventure would start so I go to where going to bed was exciting because it meant morning was just around the corner.

I always could find a way to make everything look and feel good maybe that is why I have been able to make so much lemonade out of lemons and have lasted this long.

I have gone down physically this past week. I have a bad bladder infection, allergies. The change of seasons brings out the worst in my symptoms to where everything  potentates and every symptom screams out loud and clear. This is when it takes my most patience and I must hold on to my faith with all that I have. I still hate losing a day.

I ache to feel better so that I can feel some of the old feelings again. Medications numb you though and it makes it hard to feel this I truly feel robbed of, my feelings. I love my feelings they always carried me through the day and made me so happy each and every day. Down days is something I just never experienced until I got ill.

I have to redo my health plan as I see this one is not working so back to the drawing board with you. I am going to redesign it this weekend.

I have surgery on Monday so I will not be writing for a couple of days. They are doing a muscle biopsy to try and find out the “cause” of why my muscles have wasted away and do not work correctly anymore. This Neuromuscular doctor feels he can get the answers to my muscles and my nerves from this biopsy. Because I am unable to lay still with the electrical shocks they are having a general surgeon do the surgery under Versed because it is two hours and I must be totally still. I will enjoy the Versed, to not feel pain for a couple of hours feels like heaven to me so I am really looking forward to it. I know that sounds strange but if you felt the constant and relentless pain you would also enjoy the relief believe me.

I am beat as you can tell by my writing so I guess I will try to sleep and pray that I wake up better so I can have a beautiful day. I am going to use all of my attitude to make tomorrow or today rather a wonderful day.

So until tomorrow my fellow travelers I say goodnight and may you find peace in your sleep and make your tomorrow all that it can be.

Mary-Anne

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