“Make up your mind that no matter what comes your way, no matter how difficult, no matter how unfair, you will do more than simply survive. You will thrive in spite of it.” – Joel Osteen
Through this illness, struggle, and pain ,and through this fight I have this hope.
This hope of being able to find true happiness beyond this struggle.
This hope of being able to be stronger from all of this.
This hope of being able to get better, to fully recover.
This hope of being able to try new things and not be afraid.
This hope of being able to truly live not just survive.
This hope of being able to find myself in my struggle.
This hope of being able to reach my goals for the future.
Hope, Faith, Goals, Dreams. I want to make these things the focus of my life moving forward.
For a long time I felt like all I was doing was going in circles, standing still unable to move forward. Living with constant, debilitating pain with no real relief, unable to even sit up with no more than a few minutes at a time. Everything was a struggle. Now I am finally able to say I am starting to move forward, able to look for a direction.
For a long time my illness has controlled every part of my life. Even in high school going to class became a struggle, and even work from home became too much. Since I was unable to go to school I put everything into my health, trying to get better I worked really hard at it, but my health continued to get worse. For about a year and half I was unable to do any schoolwork, and later I looked for a program online. I completed it at home, and I was given a diploma, but my health had gotten worse and I didn’t think much about it until a few weeks ago, and I found out that is it not accredited for colleges like it said it would be. Which is frustrating to hear, but now this is the first thing I am going to work toward as I continue to work towards getting better.
At times is easy for me to be hard on myself, or to compare my self to others who are healthy, but I have made really good progress in the last three months. I am turning twenty in a few days, and it feels so good to know that I am getting closer to be able to start living. Not just surviving.
Don’t compare your progress with that of others. We all need to travel our own distance. – unknown
You are valuable because you exist not because of what you do or what you have done, but simply because you are you. Max Lucado
And each went straight forward; wherever the spirit was about to go, they would go, without turning as they went. Ezekiel 1:12
You just need to put yourself in someone else’s shoes and then see how they feel and then you will understand why they are reacting or why they are behaving the way that they are behaving. We need to be fair. Navid Negahban
A few years I would have never imagined how hard living with my illness would be. How hard everything seems to be. How everything changed. How frustrated I feel.
Living with a chronic illness there are battles we face everyday.
There are so many things we can’t control.
We live with the uncertainty.
The questions that may never be answered.
When your too sick to think about anything, but your illness.
The doctors that don’t listen, or believe you. The people around us that don’t understand how hard living like this is.
We Wish and hope for some understanding.
I wish and hope more people understood that just because I don’t always talk about my pain, that it doesn’t mean I’m not in pain. I also hope that when I do talk about my illness that more people don’t just assume that I am obsessed or depressed.
My illness is real, and so are my feelings about my illness.
Nothing about being chronically ill has been easy, but I have gotten through all of my worst days that I can keep going. The more I more forward the more I want to live not just survive.
“I don’t talk about my illness so that you will feel sorry for me. I talk about it so you will know what I’m going through, why I am the way I am. I don’t want your pity. I want your understanding. And sometimes, I talk about it because I had a bad day and just like you, talking about the bad thing makes me feel better. It just so happens I have a lot of bad days and my illness is usually at the core of it.” – unknown
““One of the hardest things about being chronically ill is that most people find what you’re going through incomprehensible—if they believe you are going through it. In your loneliness, your preoccupation with an enduring new reality, you want to be understood in a way that you can’t be. “Pain is always new to the sufferer, but loses its originality for those around him,” the nineteenth-century French writer Alphonse Daudet observes in his account of living with syphilis, “In the Land of Pain.” “Everyone will get used to it except me.”” -New Yorker, “What’s Wrong With Me?”
I thought I would try something a little different for this post. Here are some things Chronic illness suffers can relate to.
1. When you and your doctor are not on the same page.
2. When you have the flu on top of your chronic illness.
3. When your trying to explain your life to other people:
4. When your file at a doctor office keeps getting bigger:
5. Having brain fog is like:
6. Some days I feel like yelling and screaming and its like:
7. When your doctor asks you what is bothering you today.
8. When people ask me how I’m doing:
9. When your pain is a little better all of sudden.
10. When I have a new symptom I’m like:
Some pain is so hard to fight.
The pain that wakes you up in the night.
The pain that takes your takes breath away.
When the pain becomes too much it takes everything you have not to fall apart.
When did the pain become so intense?
Two years ago? Maybe Three or four…
Pain doesn’t seem to sneak up on me anymore.
Fighting pain everyday is exhausting.
I am ready for days without pain.
I am ready for good days.
I am ready for the days where I can do more than just fight.
For now, I will continue to fight for better days, and hope for days without pain.
I know I haven’t updated much lately. I have been feeling pretty awful the past few weeks. I have had this post in my drafts for two weeks, and even writing has been hard for me. Sorry if this post has a lot of errors!
These past few weeks I have been starting to feel even worse than usual. I have been feeling weaker, extremely exhausted, every little thing is harder than usual. I having been having to sleep more during the day. My brain has been feeling more exhausted and heavy than usual. I have been having a hard time thinking, reading, writing, and even having a conversation sometimes. I have lost some weight, and overall my body has been very unstable. I have also noticed that when I sit in the outside in the sun, even for just a few minutes my oxygen drops really low.
I got my results of my neurotransmitter test back, and there worse than they have ever been. None of them were in normal range, and they were all severe. I am barely making any epinephrine. Most of them changed drastically from the last time I tested them back in February. So many of my metabolic pathways are not working. My body is having an extremely difficult time processing just about everything. Lately my oxygen and sugar have been very unstable even when I am just sitting or laying down.
Something has to change soon. Lately my doctors have come with a plan to try to force and drive nutrition to help my oxygen, sugar, and for my DNA. In the past we haven’t been able to push my body because it has made me feel worse, but I have no choice now. I have to try something to open up pathways, to live. To have a better quality of life.
I am ready to live Not just survive.
I am very grateful I have doctors who take so much time to help me.
I would appreciate all your continued support and prayers. I have still have a tough road ahead.
Luke 1:37 – For with God nothing shall be impossible.
Philippians 4:13 – I can do all things through Christ which strengtheneth me.