Yes, apparently it is that time again when I overwhelmingly feel like my world is falling apart and thus lose all sense of hope.  I know from experience, that this feeling may not last forever. I may find a day where I see a glimmer of hope.  But for now, that door has been closed and I'm feeling pretty crappy.

Yesterday my voice issue got worse.  If I spoke too loudly, my throat would vibrate and it was NOT a good feeling.  I wonder if that's what dogs feel with dog barking collars.  Almost like I would get zapped if my voice level was too high.   Fun.

Later afternoon my neck started feeling tight again around the collarbone area.  Not sure why.  Thought I'd take an aspirin again in case I was having some type of blockage, but not entirely sure this was a wise decision.  Over the course of the evening, my numbness started to greatly increase, ringing in my ears returned and my body switched over to some type of alien being, one that felt like it was on earth, but wasn't supposed to be.   Everything I touched caused discomfort. My entire body felt like it was hooked up to the electric current of our house wiring.  If my hands or feet were to touch anything, it produced a feeling that could be likened to wrapping your fingers tight with a string to the point that you lost all feeling and the pain starts to increase.  The only problem is if I move them to take the pressure off, it just creates the feeling of pressure somewhere else.  I wonder if I could perfect some type of levitation device so I don't have to touch anything?  Driving becomes quite an uncomfortable task, unless I find a way to not hold the steering wheel. Typing? Same thing.. pressure on the fingers.  using a knife and fork to cut anything of substance is something I'd rather not repeat.

I lay in bed, wondering why God didn't just grant me a disease that was quick and had some finality to it.  At least then there wouldn't be this long, drawn out suffering.   I have prayed and hoped for so long .. only to have things get worse, that I don't think I hope any more.  I'm probably too scared to even hope for hope.  I feel like I live in a glass fish bowl.  I have little fishes to take care of, which sums up my existence.  Yet I have this disease which keeps me from doing much swimming or anything else.  I look through the glass at the world outside the tank, and feel such pain that I cannot contribute or participate in the life outside.    I am stuck.  I have no choice.  I feel like a prisoner.  I guess the best way to describe it could be hell on earth.  I feel like a shell of a person.  What can I contribute?  I do what I can but I'm so tired of feeling like I'm just a burden to all my caregivers.  Why did God create life?  Why are we here?  Are we here to take, take and take some more?   The anatomy of a disease should be that it kills quickly, at least then it would have some mercy.   Or maybe that's the point .. to be long and tortuous.  Maybe I should just be mad at Adam and Eve.

Are we built to take pain day after day?  How long before your spirits are completely crushed and cannot continue?  This is a life of existence.  There is no flourishing.  There is minimal joy.  Maybe a few joyful moments when kids do something quirky or silly.  But I cannot look at tomorrow.. at all.   I fear what tomorrow brings, mainly because I have nothing left in me to fight anymore.  I have no choice.  I must continue minute by minute.  I wish I had been given a choice sometimes. This feels like a nightmare in which I am not waking up.  I hate looking at photos of a few years ago, before diagnosis, before any symptoms started to pop up.  Those were days of true joy, I would give anything to go back to 2006.  But I cannot.

So I apologize for my pity party, amidst the update of my symptoms.  I'm sure I'll find a way to cope again soon.  But I'm beginning to realize these feelings of loss and being beaten down have always been there, and probably will always be, even if I find new ways to suppress them, or deal with them. I am not a strong person. I never have been.  I so long to just be told everything will be okay, soon.  But I can't let myself go there.  I will fall apart.  I need to focus on what the next meal will be, resolve the next fight over lego, and figure out how I'm going to get the chores done that loom over me.  Anything beyond that currently does not exist in my fishbowl. I'm just so tired of holding it all together.    I so much want to just let myself fall apart and give up.  I do not want to fight.  But I know what that brings:   more pain, despair and the inability to cope.   So, against my will, I have no choice -- I must put one foot in front of the other and continue to exist.   Time will not stop for me.  It moves on without me.  So I can only choose to stop and give up, or to keep going with this body that I did not sign up for.  Without my precious children, I would not get out of bed.  For my kids, I will keep going.
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6 Responses
  1. kettlebell Says:

    Hi Dawna,

    No need to apologize for your having a pity party. It not easy living with MS when you feel so uncomfortable in your own skin 24/7. That would test anyone’s patients. I was hoping things would turn around for you after the 2nd procedure.

    Dr. Simka did find that some patients got some releif from incline bed therapy, when their symptoms started to return after the procedure. Maybe send him an e-mail or try raising the head of your bed 5% to see of it helps. If you would like to research it, google inclined bed therapy and Andrew Fletcher.

    Let hope things turn around soon here in Canada so we can all get properly follow-up care and don’t have to wonder what’s going on with our bodies. Your in my prayers. Hugs!


  2. Unknown Says:

    I have been doing the inclined bed therapy for the past year. Thanks for your comments - I appreciate your input!

  3. Merv Best Says:

    Follow me sis... I'm just slightly ahead of you... BUT, I'll never be out of sight... rest a while in my draft... I'll go back and carry you if you need a rest...

    I love you... if you can't see Him this moment... He sees you... if you can't hear Him, rest assured, He hears you... Dawna I see Him... I hear Him... I'm strong enough for the two of us... follow me as I follow Jesus till my last breath...

    "Lord, please allow me to carry some of the weight of my precious sister's burden for the next few miles... since you alone have carried the weight of my sin on the cross, and every day since I first believed. It would be a privilege... Amen."

    I love you sis... great days are ahead... REALLY! (no spiders this time... promise ;-)

    your wonderful Your partner in suffering, your devoted friend,

    "Asking why is ok - - - Jesus did - - "My God, My God, why have your forsaken me?"

    When your heart is being wrung out like a sponge, an orderly list of "sixteen good biblical reasons as to why this is happening" can sting like salt in a wound. You don't stop the bleeding that way. A checklist may be ok when you're looking at suffering in a rearview mirror, but not when you're looking at suffering in the present tense. When people are sorely suffering, people are like hurting children looking up into the faces of their parents, crying and asking, "Daddy why?" Those children don't want explanations, answers or reasons why, they want their daddy to pick them up, pat them on the backs, and reassure them that everything is going to be okay. God, like a father, doesn't just give advice. He gives himself;

    * He becomes the husband to the grieving widow (Isa 54:5)
    * He becomes the comforter to the barren woman (Isa 54:1)
    * He becomes the father of the orphaned (Psalm 10:14)
    * He becomes the bridegroom to the single person (Isa 62:5)
    * He is the healer to the sick (Ex 15:26)
    * He is the wonderful counselor to the confused and depressed (Isa 9:6)

    This is what you do when someone you love is in anguish; you respond to the plea of their heart by giving your heart." Joni Eareckson Tada

  4. Unknown Says:

    I love you my dear brother!

  5. Anonymous Says:

    Dear Sis in Law,

    My heart aches for you. So sorry you are hurting both physically and emotionally. No words...only love.


  6. Mandy Says:

    Sounds like you need to have a party in that fish bowl... :) I think I am inviting myself into that tiny little fish bowl so we can make the world look in and wish they were in there! :) I love your heart Dawna... and am thankful that God brought you into my life!! Thanks for sharing your journey with "us" outsiders and letting us know exactly how to pray for you.

    PARTY in Dawna's fish bowl next week!!! Come one, come all!! I'm looking forward to catching up with you.