Maybe There Are No Answers. Fulfillment

For the last month, since my vision has stabilized enough to
kind of read, I have been researching my visual symptom. I have come to the
conclusion that it is some sort of vestibule-ocular issue such as oscillopsia;
the illusion that the world is moving. This results from some sort of slippage
of objects on the retina. I don’t fully understand it yet but what I have
learned is that nowhere does there seem to be any suggestions on treatment or
management. As oscillopsia can be considered an extreme form of nystagmus (an
involuntary oscillation of the eyes) the closest thing I can find that may help is gaze stabilization exercise
where you basically stare at a stationary object (such as a card with a large
letter on it) and you turn your head left and right at the quickest speed you
can before you loose focus. I have no idea if this would do anything for oscillopsia. I will bring
it all up when I see my neurologist in a week. It’s so hard to live with this
visual disturbance. What can I do? Maybe nothing but wait for that lesion to go
away. Steroids/Acthar? Maybe if it’s not too soon.
Since I can’t really get around or do anything I have had a
lot of time to just sit and think. Too
much
time maybe… For the last couple of years I have had a feeling of
emptiness lingering about me and I quickly attributed it to not having a social
life. Not having money… success… things I could show to people. I realized
however, none of this is the root cause of how I feel. No, I have lost my
feeling of fulfillment; I have no
outlet to make up for the things I can no longer do in life. Let’s see, I used
to hike, camp, ride motorcycles, fix motorcycles, build things, etc. It made me
feel good; happy. I can’t do most of that any more and I never found something
to replace it. When you go on a diet you cut certain foods out and in doing do
you have to replace them with something healthier. If not you will starve and
waste away. With that analogy in mind, I am starving, I am wasting away. I used
to draw, sculpt, and write; fictional writing. Fictional writing; maybe I need
to pick that up again to use as a new outlet? Maybe I need to blog about world
issues, social issues, my random thoughts or just about a funny movie I saw
since I have no one to share that stuff with anymore. I am not sure? I have no
idea how to start when I am lacking in motivation so much lately.

I hate this visual
symptom, it’s making life miserable but obviously it has given me a lot to
think about and it has also saved me a lot of money on gasoline since I can’t
drive (haha). I have been able to start watering the backyard to try to get the
soil ready for a new garden and I have been slowly been learning to take care
of myself again as in make myself coffee in the morning or reheating meals in
the microwave. Baby steps. I suppose I am getting better much like my hair is
growing; ever so slowly. Hmm… I need
a hair cut…

8 thoughts on “Maybe There Are No Answers. Fulfillment

  • March 31, 2015 at 8:37 pm
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    Shit i just messaged you but think it vanished on me :/ anyway great piece of writing and think you should write 🙂

    Reply
  • April 1, 2015 at 6:38 am
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    You rock Matt. Write a book. A man slammed but keeps on getting up. Your writing is intimate – like you are in conversation with me. That's a rare gift in writing. I feel known by you – that's weird I know but it is true. You do that. Your integrity and lack of embellishment or ego shines bright Xo

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  • April 1, 2015 at 2:25 pm
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    lol thank you, it's funny, everyone who personally knows me would say I have an ego but I have learned to control it. PROBABLY as a result of seeing so many neurologists with egos; it ticks ms off and I don't want to be like that haha. ANYWAYS, thanks again, I may start writing one soon I just am not sure how to build the motivation to start.

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  • April 3, 2015 at 8:07 am
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    I think you have a talent for writing. I am sorry to hear about your vision. My ms presented with optic neuritis in the right eye. I thought I was going blind in that eye. It is getting better and I am back to driving now. Keep blogging. And maybe do some fiction too. 🙂 Everyone suggested to me to listen to books on tape. I did that a little, but I generally find the readers' voice/tone to be annoying for the long haul. I hope you feel better. Baby steps is a big mantra for me. 🙂

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    • April 3, 2015 at 2:36 pm
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      Thank you, I am just struggling with motivation lately (well, more than usual) but when I can muster some up I will write :p. Thanks

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  • April 28, 2015 at 3:01 am
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    Hey Matt, after reading your message up top, I can see that you do have a gift of sharing your experiences not in a matter of just telling, but as if you were teaching and allowing others to electronically walk with you through your journey with MS. In my opinion, the fact that you continue to post messages on your blog shows others that you are not going to let MS beat you. At every stage of of MS, I can see that you strive to function to your fullest capabilities. I am not saying that it's a walk in the park, but I appreciate how you do your own research and try to make sense of new symptoms and conditions. As a student, I appreciate your sacrifice and transparency in order to build awareness and light to a seemingly debilitating condition. I hope you hone your skills for writing and other forms of expression because it's people like you that help others like me understand not all but much of the struggle people with MS go through.

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    • April 29, 2015 at 1:19 am
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      When I was diagnosed I realized "this is chronic, I will have MS till the day I die" so I decided I needed to educate myself. I wanted (and still do) to know just as much about MS (if not more) than the average doctor. I have a vested interest in knowing my stuff. I have had doctor's look me in the eye and lie to me about something because they think that I don't know they are BSing me; so I smile and walk out of their office. I would rather a doctor tell me they don't know the answer to my question than a doctor who lies because if I know they are lying about one thing how do I know they are NOT lying about another?

      Anyways, got off track there haha, I write and reply when I can just as I do what I can when I can. I try.

      Reply

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