Chronic Fatigue Syndrome, Fibromyalgia, Neutropenia and Postpartum Cardiomyopathy, all Chronic Diseases, fall into the Autoimmune Disorder category (except Postpartum Cardiomyopathy which is a form of congestive heart failure) and all conditions with which I am intimately acquainted.
Years ago, a person who I thought was my friend, basically said that because I didn't look sick, because I was able to Produce a musical filled with Teenagers, because I was able to home school and because I didn't act sick then I was faking it. I have had family members, who should be supportive (or you would think) who have ignored the pain I live in, who have blown off the illnesses I fight daily and act like it doesn't matter or isn't real. I wish those people and many others could actually see what it is like behind closed doors. I wish they could see me when I try to get out of bed in the morning and land on the floor because my legs simply won't work. I wish they could see me at the end of the day when I literally crawl up the stairs to get into bed. I wish they could experience one day in my body and know the pain I live with daily. Wait - no I don't. Why—because I wouldn't wish this on anyone. That is not who I am.
Fight - what does that mean to you? The dictionary defines it as to struggle to endure or surmount
or this one to contend against in or as if in battle or physical combat. Either definition is good. Either definition is my life. It isn't part of my life. It isn't some of my life. It isn't even a majority of my life. It is ALL OF MY LIFE!
To struggle to endure or surmount is definition #1. Lets look at that one first. Every morning I struggle because I wake up in pain, I struggle because I wake up tired, I struggle because I wake up hungry but not able to eat. I struggle to try to eat but food doesn't stay down or it makes me wish it wouldn't stay down. I struggle when I wake up and try to take a bath or a shower immediately to make my body work. I wake up and struggle with the embarrassment and self loathing when I have to call Jim to help me stand up or use a walker (if my shoulders will let me) in order to not land on the floor and have to try to get up from there. I struggle to simply wake up, many times after not having slept for more than a couple of hours, to face a day that I know will be filled with pain, frustration and overwhelming effort just to exist. I struggle to home school Stephen and get frustrated when I think I have fallen far short of what he deserves. I struggle with the feeling of not being a good wife and mother because of the conditions I face. I struggle because I feel like I am not a good friend or family member because I cannot always do for others the way I want to or the way God has made my heart to be. Basically I STRUGGLE.
To contend against in or as if in battle or physical combat is the second definition and while I know it means to physically fight against another person it also applies to me. I fight or combat physical obstacles everyday—some days every moment of every day. I combat the pain in my hips to walk. I combat the pain in my shoulders and arms to do laundry or to cook, I combat the pain in my back to clean the house. I combat the neck pain to sit and help my son get through math and science (which is no small task). I combat dizziness and lightheaded feelings to be able to do simple things others take for granted like go for a walk, wash dishes, read, watch television, and my favorite, crochet, knit or loom. It is a Battle—an everyday battle to do what most people take for granted.
Why do I do it? I have been asked that question, sometime by people who care and other times by people who don't believe anything is wrong with me. "If you are so bad off, why do you do the things you do? Why don't you just give up?"
I can answer that with one image:
ANY OTHER QUESTIONS?
For those who don't know, this is Jim and Stephen. Jim is my husband of almost 19 years. He is my strength, my cheerleader, my love, my rock, hero and my best friend. Stephen is my son. He is 16 (13 in the pic) and is my heart—absolutely, positively my world. He is my sunshine, my strength, my protector and my reason to push when I have nothing left to push with. He makes me smile when I have no other reason to smile. He knows when I am hurting even when I don't let anyone else see it. These two, my boys, are why I don't give up.
In June of 2017, we finally were able to do what the doctor recommended and move to Florida. My immune system couldn't handle the Michigan winters anymore. I was sick all the time, or if I went out in public, I had to wear a mask. I was tired of being isolated and alone. Jim, (remember, my hero) moved to Florida five months prior to find work and we were finally able to move. It has not been easy. Many things have not gone as planned and over time I will talk more about them but for now, let's just say it has been a rough landing in our new lives. My health has continued to decline instead of improve and even though the doctor in Michigan warned me it could happen, it has been very discouraging. I had hoped and prayed that the move would just miraculously make me better. To give me back a life that was long gone but not forgotten—the life when I was able to do what I wanted without wondering if I started the project would I be able to finish it. I wanted that life back. It hasn't happened. I am tired of waiting.
That DOES NOT mean I am giving up. It means I have decided to fight harder. I have talked with Jim and my doctor. I have researched and Googled for hours and hours. I have talked with other people who live with the same conditions and I have decided that I am going to fight back. I am going to WIN!
The first step for us is one I had begun before the move and it was helping. We will remove processed foods and preservatives from our diets. Does that mean I will never have another Slurpee or Pepsi, no. Does it mean I will never eat a boxed cake mix - NO! Does it mean I will never eat out again - NO! It means that those things will not be the norm for us. It means that we are going back to eating what is known as farm-to-table. I am going to use what energy I have to do canning, freezing and making fresh foods whenever possible. Is it going to be easy - NOPE! Remember the FIGHT I STRUGGLE with everyday. This, however, is NOT a choice. It is a requirement. One of the "conditions" I have is life-threatening. I have Congestive Heart Failure. It was brought on by doctor neglect when Stephen was born. I will have this forever. It can be managed and I will manage it. I CANNOT give up. Remember the picture? I will FIGHT! I will WIN, or I will die trying.
I will be blogging this journey. There may never be anyone who reads it. There may never be anyone who follows it and I am sure there will be people who say it isn't true and I am faking it. WHATEVER! I am doing this to document my journey to health. I am doing this for ME! I don't think about me very often but this is one thing I am doing for me. If you are interested or have any suggestions please feel free to comment. I will be making YouTube videos as well with links to those.
Thanks for reading.
Vikki
Psalm 46:10 "Be still and know that I am God"
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