It’s 5am, I’ve been up since 2:30. Another night of insomnia where my mind and my body are betraying me again. My brain won’t shut down, and I’m having waves of heat, systemic irritation and an upset gut. My buddy edema which never leaves or forsakes me is also having a great party.  I have to get up at 7:30am for work and I am hitting a wall right now physically, mentally and emotionally. 

How do i keep going on? How much more of this can I take? And with this emotional crash comes all the old hurts and devastations, anger, garbage and the “lies” that are really true but just a matter of perspective (is my liver causing me this crisis?): I am such a waste of a human being. I’m a black hole in a world of people who have value. My health has cost about 100,000 and where am I now? Am I living and thriving? No. Do I believe the doctors that say they can help and keeping pouring money out while I still live a half life and feeling like crud, or would it be better just to stop everything and give up?

My body is angry. It likes being angry. It likes to punish me for every bite of food I eat. It likes revenge for any bit of fun I have or energy I expel…. The only difference is in degree. So I made myself soup tonight all healthy and diet friendly, save maybe for garlic. Is this the way it’s always going to be? A night of sleeplessness and misery for something stupid like eating a little garlic? 

Why won’t the fluid retention/autoimmune/pain/fatigue get better? Is it mast cell like we are exploring now? Is it lymph virus? Toxins? Liver? Kidney? Pancreas? Spleen? Leaky gut? Celiac? All of the above? Parasympathetic nervous system?….

I have been told all of the above, treated for all of the above and more (and we’re not even talking about the Lyme and coinfections anymore). 

What hurts right now is thinking about all the normal people who live “whole” lives and don’t know what it’s like to live with access to  pieces of yourself, to never be whole or wholly alive. On your good days skating by at 70%, having to choose between obligation and everything else that makes up life. Obligation always wins and then years of your life just pass by and you find yourself in the south side of your thirties and possibilities for the future keep narrowing with every passing year until they are a pinhole and the things you have never done and never experienced far outweigh what you have, and I’m not even talking about big bucket list stuff… I’m talking about life experiences most take for granted.

A tear just fell on my pillow. I know tomorrow is another day and I know realistically I will not be so negative when I’m not out of my mind with lack of sleep, grief and discomfort. It’s just tough as I am getting another wave of heat and agitation thinking about a full day of work on an empty battery…

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5 thoughts on “Living a half life

  1. Hang on dear friend. You are a child of the King and I know He will reward you someday for persisting! I grieve for your suffering. I pray that the Lord meets you somehow, someway on your bed of sickness to encourage you, to let you know that you are not alone, to hear you. He is coming soon to take all this strife away. Working back from that day to now, we can, we must, keep breathing and doing the stuff He calls us to do. In doing so I believe that we bring ourselves into the hope that is ours alone as believers in Jesus Christ. We got this! Love you, Julie

  2. JENNIFER, I’m so sorry. I’m still believing for you to be totally whole in your body. I pray right now that you might sleep, your mind clear and peaceful. May His peace be your portion. Sweet Peaceful Dreams in Jesus Name!
    Hugs. Theresa
    Paint when you can. I love your art expression.

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