Friday, March 16, 2012

Going Softly into the Good Night...

I'm not sure what is happening that things continue to be difficult healthwise but today has left my weary body, mind, and soul overwhelmed and wanting to give up.

I've been trying to find meaning in all of this-the breakup, all the losses, health issues having nothing to do with ME, unable to find housing, difficult financial situation, a dog in end stage liver disease (though she's a fighter and doing pretty well right now), etc...

I can't. I can't find meaning in any of it anymore. It's just a bunch of random events that won't let up. I'm  not trying to focus on the negative or create drama. I'm simply dealing with a bunch of life events that suck and are overwhelming.

I have lost all faith in God. I no longer believe there is one. I've lost faith in myself. I have nothing to offer anyone and in fact, feel like mostly what I am is a burden on society. I am considering doing minimal volunteer work so I at least feel like I'm contributing somewhere.

I don't have hope for anything good to occur in my life anymore. After being knocked down again and again its easy to see why I've given up. I no longer have faith in the future.

I'm aware that reading a blog that talks about the dark stuff or isn't all positive can be a drag but try living it-that's even more of a drag. I actually try to not talk about this stuff in my daily life.

My back pain has revved up again. Today I got up from sitting at the kitchen table and had such pain in my back that I could barely lift my left leg. I tried taking 2 steps and had to stop. After a minute I was able to walk with minimal pain. At times both my legs feel weak. The surgeon thought the weakness was neurological but it isn't because I don't have the leg weakness when I'm not having back pain. The spine surgeon has been recommending a spinal fusion since I started seeing him last year. I've been trying to avoid that.

A little while later I had a bad bleeding episode. They are always unnerving because I'm not sure its going to stop. I have an appointment on Monday with my GI doctor. It looks like I'm not able to maintain on a lowered dose of hydrocortisone which means surgery.

A lumbar fusion is an extremely painful surgery. The colon surgery even worse. One person on one forum said its worse than giving birth, or, its the worst pain they've ever experienced. It would be nice if I could have both surgeries at once and then be put in a coma for 3 weeks.

There are times I'm in utter disbelief at what my life has become. Others I'm overwhelmed with grief and sorrow. I keep fighting on but I have to ask myself why fight anymore? What am I even fighting for? A future that holds a life of living in poverty with lousy medical insurance while living in isolation?

Just as I'm having improvements in ME symptoms, other parts of my body are struggling. I've been worried about having any sort of surgery because I don't want to end up bedbound again. I can't do it. I won't do it.

I wish I were stronger but I'm not. I used to consider myself a strong person. I can't turn all of this into a positive.

I've found myself asking the question 'If I could have 2-5 good years and then die would I trade that for another 20 years of suffering with this disease?' I would take the 2-5 good years hands down.

I've downloaded and am filling out my Advanced Healthcare Directive (everyone should have one on file with their MDs'). I used to have one when I was with a large HMO but I need to do another one. I do not want my life to be prolonged in certain instances. I'm also stating that I am a DNR (do not resuscitate) if my heart stops beating or if I'm unable to breath (that also needs an MD's signature).

The only thing left to do is surrender and not fight. I'll see if that shifts anything.

7 comments:

  1. I'm so sorry you're struggling so much. I think anyone would be struggling under the same circumstances. Does your family realize how serious your situation is? Is there any way they can help you or have you live with them on a long-term basis? Or help financially so you can live relatively comfortably on your own? It doesn't seem possible to do it all on your own when you're so sick and have strong financial limitations. I hope something will turn around for you. Sometimes when things have been really bad for me, something unexpected happened to help things a bit. I hope that will be the case for you too.

    ReplyDelete
  2. I am so so sorry that you continue to go through so much...it is unreal and unfair and more than challenging. I know you have been having die off of bacteria too? That has to be difficult to add to the other issues.. I am so sorry. You are in my thoughts and prayers.

    ReplyDelete
  3. I too am so sorry that these days are so hard. My heart, hope, and prayers are with you. One of my favorite sayings is one my Mom said all the time,"this too shall pass". She had some really hard things in her life too and she knew that continuing to hope was very difficult.

    Please hang on and know that indeed, "this too shall pass".

    Blessings to you,
    Elaine

    ReplyDelete
  4. I'm so sorry you're going through all of this. I know you've already been through so much and more just keeps getting added on. I am thinking of you and praying for you my friend. (((hugs)))

    ReplyDelete
  5. I hear ya, Warrior. Blog it out! It is not going to hurt anyone, and it going to help you to vent, and tell-it-like-it-is in Your Own Blog where you can say whatever the hell you want! Take it from one who knows! The best thing you said was at the end about Surrendering. Surrendering to the suffering, after the venting, of course, is the only way I can consistently find peace and joy deep within again. Judy

    ReplyDelete
  6. I continue to hold you in the Light.

    ReplyDelete
  7. I feel so deeply for you. Always write what you feel. Your honesty is your gift to us all.

    ReplyDelete