Still No Change In Vision

It’s been difficult lately. I realized I am facing a new
obstacle. An obstacle I have no idea how to properly face. The loss of hope. My vision (oscillopsia and nystagmus) is not improving; in fact, it seems to
have got a bit worse again. I can’t remember (nor do I want to look it up right
now) the numbers regarding how long a symptom usually stays around before it will probably become “permanent”.
Some symptoms heal like a cut, leaving no indication anything was ever wrong
with your skin, and some scar over
leaving a permanent reminder of that wound. Only the scars in my brain are not
a simple “visual” reminder but a symptomatic reminder that affects my daily life.
Off the top of my head I am not even sure how long this has been around but I
know it has not been a matter of weeks but a matter of months and because it
has been that long I am loosing hope.
Motivation. Energy. Will power.
I have not been wanting to wake up in the morning. My alarm
goes off at 5:45am and I get up to turn it off only to lie back down and fall
back asleep till about 8. Everyday I sit here and kill time while I count down
the hours till I can go back to sleep. The 8 hours I get to close my eyes and
dream, 8 hours of life where the world is not spinning, 8 hours where I can
function, see, get around, and just be “normal”. Even nightmares are more
desirable than actually being awake where even sitting here and trying to write
I feel dizzy.
If I sit down and don’t move an inch I can watch a TV show
or a movie and for a few seconds at a time forget that I am stuck in this
constantly moving world. A world where I can no longer walk in a steady line. A
world where I am constantly almost falling and a world where I can’t see
anything around me unless I stop and don’t move for around 30 seconds to let
everything slow down a bit. Even slowly turning my head left or right is enough
to set off the spinning. It is miserable.
I
am miserable. I don’t want to think about it but how can I live a
productive life like this?
I try to stay optimistic but because I chose to not remain
“ignorant” in the mechanics of this disease my optimism is slowly burning out
like a flame under the water of pessimism. My optimism is drowning in a sea of
pessimism and I really don’t like who I am right now.
Equally frustrating is my inability to truly describe what
this is like. I can say “I feel dizzy” or “the world looks like it is moving”
but that really does it no justice. I lack the vocabulary to express what this
actually looks like. It frustrates me! Like I am stuck in my head trying to
tell someone something but I am unable to move my lips. I feel… helpless? Makes
me wish I could just be put in a chemically induced coma for 6 months while my
brain heals and I just dream that everything is OK.
But after all, maybe it is
healing, slowly, like how our hair is
constantly growing only so slowly
that we really can’t tell on a day-to-day basis? Maybe I really do just have to be patient and things will improve with time? What else can I do? I can only wait and
hope. It’s just getting so difficult. I am not sure what to do with this lack
of hope and motivation. Again, this is a new trial I have never been through; hopelessness. Even in the past, while I
was in physical rehab, I at least showed progress, which fueled my hope. I
could see the changes almost daily
but not now and it’s driving me crazy.
It’s making me desperate. What drugs have I not tried?
Baclofen? Maybe diet will help? Stress reduction? All things I am not sure how
to properly accomplish. I tried making Salmon for lunch yesterday to increase
my Omega-3 intake – green tea (which I hate) for it’s antioxidant properties. I
even wonder about new drugs such as
Anti-Lingo-1 which is not even FDA approved yet but if I can’t remyelinate that
one single lesion on my own maybe I will
have to switch to a new medication?
I don’t know, I just want this to be gone. I am no longer
waking up and hoping that I will be able to see. It’s like I have accepted this
as my new reality. But I can’t live like this. I can survive but I want to actually live.
Life was already difficult and now I can’t drive or do anything that I feel I
have the energy to do that will help pass the time.

I feel so negative and that is partially why I have not been
blogging that much. I just don’t want to think about MS.

23 thoughts on “Still No Change In Vision

  • April 24, 2015 at 4:07 am
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    I am so sorry to hear about your experience with dizziness. Have you ever heard of Benign Paroxysmal Positional Vertigo (BPPV)? I've just learned that in my sensorimotor class. Vertigo can be affected by calcium carbonate particles that are either stuck on the semicircular canals or the cupula of the inner ear. Some physical therapists and occupational therapists are specialized in sensory rehabilitation. If you are experiencing vertigo for more than 3 days, I would probably try to go to a HEENT doctor, PT, or OT that is trained in vertigo related to help getting the calcium carbonate particles in the right location. I know that vertigo and oscillopsia are also part of MS… Why don't you go to a PT or OT that is specialized in this area to check if you may have BPPV. I know it's been very tough for you, but remember there is always light through a dark tunnel. I don't know if you are religious, but one of my favorite Bible verses is from Psalms 55:22, "Cast your burden on the Lord and He shall sustain you; He shall never permit the righteous to be moved." I hope that is an encouraging verse for you. Stay strong and fight on! 🙂

    Reply
  • April 24, 2015 at 9:35 pm
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    Hang in there. Your body always wants to heal, just very slowly. Every cell wants to heal. Change your diet, low fat, plant based, antioxidant rich, blood thinning, anti-lipid diet. get your blood flow improving again. do that for 3 months, you can give up, but only after sticking to a low fat plant based, vegan, diet, bright fruit and veg, for 3 months. give our body all the stuff it needs to heal again.

    Reply
  • April 25, 2015 at 12:39 am
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    I have been on the Swank diet for eight years. The duet, along with rest and stress reduction (hard but necessary) has really helped me. Its free. You have nothing to lose. Please research it. Facebook has an excellent Swank group. Get the book, Dee if it might help you. You are in my prayers. Loss of hope is the worst.

    Reply
    • April 25, 2015 at 1:20 am
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      Been there, tried that, diet doesn't seem to help me. I still try to eat decent just to be as healthy as I can…

      Reply
    • April 25, 2015 at 4:14 am
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      It took 18 months to start working for me. You cannot cheat at call. You must do the rest and stress reduction as well. It takes a long time to heal. Please try it again. You have nothing to lode and everything to gain.

      Reply
  • April 25, 2015 at 12:39 am
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    I have been on the Swank diet for eight years. The duet, along with rest and stress reduction (hard but necessary) has really helped me. Its free. You have nothing to lose. Please research it. Facebook has an excellent Swank group. Get the book, Dee if it might help you. You are in my prayers. Loss of hope is the worst.

    Reply
    • April 29, 2015 at 12:39 am
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      There are a few being worked on, I am interested in "anti-lingo-1" right now

      Reply
  • April 25, 2015 at 3:23 pm
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    Please check your email- I sent you a clinical study and a few suggestions that I hope will give you some hope!

    Reply
  • April 25, 2015 at 9:00 pm
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    check out the med day md1003(biotin) phase 3 clinical study results on ms news. Finally a drug that brings back function for progressive ms.Don't take opinions for any thing read the study yourself.Next check out the tisch ms stem cell study in New York. The results speak for themselves.There is more than hope, they have results for progressive ms

    Reply
  • April 29, 2015 at 5:58 pm
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    just discovered u. i enjoy your writing. which sounds strange i know. but i do. thank u for being here

    Reply
    • April 30, 2015 at 12:06 am
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      very detailed article. Unfortunately I am already on clonazepam and I was already talking to my neuro about baclofen. Ill bring up gabbapentin as well, thought, I have never had luck with that stuff in the past for other issues,

      Reply
  • May 9, 2015 at 6:10 am
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    Matt,

    I agree with Christine. I know that visual disturbances are a symptom of MS, but you should get checked out by a vestibular specialist. I know that life is hard at this moment, but I just want to leave you with an encouraging verse: Isaiah 41:10 says, "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." In this time of despair, I hope that you can find peace. Thank you for sharing your experience with us. Take care!

    Blessings,

    Eli

    Reply
    • May 9, 2015 at 2:43 pm
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      I will be trying to see a neuro-ophthalmologist soon to run some tests so we will see where that lead me, thanks!

      Reply
  • May 9, 2015 at 6:10 am
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    Matt,

    I agree with Christine. I know that visual disturbances are a symptom of MS, but you should get checked out by a vestibular specialist. I know that life is hard at this moment, but I just want to leave you with an encouraging verse: Isaiah 41:10 says, "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." In this time of despair, I hope that you can find peace. Thank you for sharing your experience with us. Take care!

    Blessings,

    Eli

    Reply

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