Regret… Kind Of…

I am loosing my grip on “positivity”. I am so tired of this
visual crap, it’s exhausting; both physically and emotionally. Mostly emotionally. I just want to see a
world that is steady so I can do the mundane things I feel like I can
physically do like clean and cook or drive myself to the store!
It seemed like it was getting better but now it has taken me
a few steps backwards. From what I have heard online, IVIG (Intravenous
Immunoglobulin) can cause many symptoms such as dizziness. My first infusion
for this new round of IVIG made me dizzy during the infusion but quickly
subsided after I was finished so I thought nothing of it. This second round was
different. It made me dizzy during
the infusion like last time (so I again thought nothing of it) but this time it
lasted all day and night! That was Friday and Saturday was even worse. So I
tried to look into it but reading was so difficult as everything was sort of
blurred together. Imagine spinning in a swivel chair really fast for at least
30 seconds, abruptly stopping and trying to read the fine print of a
dictionary. I did not learn much but I did see a few articles saying the
effects of dizziness can last 24-48 hours after an infusion. Did I confirm this?
No, so I am not sure how reliable that information is.
Sunday; just as dizzy.
So I decided that rather than trying to stay on track of a schedule like I have
been for the last couple of months to just let it go. I felt so tired! But in
one last attempt to “reboot” I took some Ritalin and went to lunch with my
parents. I could hardly keep my eyes open, it was miserable! As soon as I got
home I went to bed. What a waste of Ritalin…
Anyways, the great thing about sleep is the world does not
seem to spin when my eyes are closed. If I dream it’s like I do not even have
MS, well, most of the time. A few
hours later I woke up still feeling dizzy. After working on a few things and
eating dinner I took some Restoril and went to bed. My favorite time of the day
now. That was a lot of rest! Surely that would help me some! Nope, Today is
Monday, 68 hours after my IVIG infusion and my dizziness remains the same! Part
of me wonders if my Oscillopsia and Nystagmus have got better but the
improvement is masked by this dizziness? I try to not think of it because it
only drives me more and more insane!
Yesterday I worked on my taxes and the financial mess that
is my non-MS life. H&R Block wanted hundreds of dollars to do my taxes
since I had a few forms to fill. I left and this set in motion an immense
feeling of depression. All I have been trying to do is set my life straight and
do everything right but it just seems to dig me deeper and deeper into a hole!
I was pretty much going to have to pay more on taxes and filing the paperwork
than I actually made! So what is the point of trying? Well that is what I was
thinking. Luckily my Uncle in Colorado (who is the Vice President of a major
Credit Union) was able to help me out; for example, the one form that H&R
Block wanted over $100 to complete just needed my name an social security
number on it! What a rip off! So my Uncle and my Dad helped me print out all
the forms I needed and fill it out… for FREE.
Long story short I should owe nothing and even get a small return to help with
some of my delinquent bills. So that made me feel a little better.
I still was buried in feelings of regret; why did I play it
safe and come back to California to be tested by a doctor (who I trust my life
with) for to see if I was developing PML (Progressive Multifocal Leukoencephalopathy)
when I could have just risked it, stayed in Colorado and never initiated this
Tysabri Rebound effect (Immune Reconstitution)? I would still be in a state I
loved, great weather, friends, a job, and best of all, I could actually see! Oh
yeah, because no one likes living with the lingering question “am I dying”. I
miss being able to see straight so much! You don’t know what you have till you
loose it and now I realize that I have been taking something as simple as decent vision for granted.
So yes, on one hand I can look at this situation as
regrettable but on the other hand, it is teaching me something I would have
otherwise not been able to learn. I try to regret nothing in life. Something
positive will always arise from something negative. That is what I want to believe
at least. “The wisest of men were the greatest of fools”; you learn the most
from mistakes and boy have I made my fair share! I’m just tired. I just want a
brake. What am I doing wrong? It feels like the harder I try to “get it right”
the harder life kicks me in the ass. All I try to do is be a source of “good”
in the world all the while people who are a source of “bad” seem to get off so
easy and be so happy. I know life is not fair but come on!

I just want to work, pay my taxes, pay my bills, save a
little, and not be constantly bombarded by phone calls from credit card
companies and collection agencies. Am I really asking for too much? I want to
feel like I am working to get ahead and not just to keep my head above water
because I’ll tell you; sometime it gets really tempting to just give up and let
myself sink. But for whatever reason, I keep on trying to rise above.

7 Responses to Regret… Kind Of…

  1. Luke says:

    Hi Matt,

    My name is Luke Depner, and I am a student at Loma Linda University currently taking an occupational therapy class with Sharon Pavlovich. Sharon wanted us to check out your blog in one of your classes, and I just wanted to say how I can relate to some of what you described in this post. Of course I don't have your exact experience, but I definitely think most people can relate to the feeling of just being tired of having to deal with all of life's challenges, and how just when you think you are making progress, life kicks you in the ass in some brand new way that you didn't see coming. It definitely sucks. I don't know if it's because I'm a glass half empty kind of person or if it's something that happened in my life that makes me distrust rather than trust life (or maybe both), but I just have a hard time finding positivity in negative situations. So when I hear you saying, "Am I asking for too much?" I definitely relate to that question and think that your feelings are normal, valid, and appropriate.

    I also relate to this other quote you said, "But for whatever reason, I keep on trying to rise above." I can't explain it, but I too keep throwing myself into life's challenges even whenever it seems like I'm not going to win. I think I have a chip on my shoulder and I am the kind of person that would rather go down swinging and giving life the finger instead of giving up, even if it's a losing battle. I don't know if it's just our hardwired drives to keep going, but yeah, it can be so weird to keep wanting to fight in life even when we can't see when the finish line is. I guess I'd rather keep fighting and see what happens even if I'm cynical about the outcomes.

    Also, I wanted to say that your recent move sounds like a really tough decision. Staying would have meant that you didn't have access to the information of your current treatment, but you left behind so much. I recently moved to California as well for school about a year ago and the transition was and still is really challenging. Moving is just a pain in the ass. I really hope things work out for you as you spend more time out here and figure out how you are going to do life in a new place.

    So Matt, thanks for letting me see these glimpses of your life through your blog and if you have any thoughts about this whole thing we're talking about here I'd love to hear them. Do you know if there is an estimated time that your dizziness will subside or are you just stuck with it for now? I hope it can get better and that you'll find a way to make do with what you are facing right now.

    • Everyone has some sort of struggle and no one can compare theirs to someone else's because pain is relevant to the individual.

      I think you misunderstood my moving situation, I have always lived here in SoCal. After being diagnosed I got REALLY sensitive to the heat so I had an opportunity to move to Colorado and I LOVED IT! But then I started having health issues and no one to help me; it was just too difficult on my own so I HAD to come back to SoCal.

      No estimated time, it will slowly heal when it "feels like it". Very frustrating…

      Thanks for the comment!

  2. Alice Hyun says:

    Thank you so much for your insight. As an OT student, I really try my best to understand how individuals feel when coping with certain symptoms and situations. And, your blog posts are so detailed and genuine, I feel as if I gained such a better understanding versus learning in class.

    Your positivity is incredible. I understand when you say you want to be just be able to cook and drive to the store with no problems with dizziness. I cannot imagine how frustrating it can be to cope in situations like this, as well as keeping your sanity. I admire how you try not to live life with regrets and try to remain positive in tough times. I hope that you can continue to persevere like you have, and continue to post because as a student, these posts are so insightful and helpful and I truly do appreciate your honesty.

    • Communicating to students is really important to me because I have encountered so many healthcare professionals with NO bedside manners. Glad you have found my blog useful and thank you.

  3. Will Hardy says:

    Your writing style is very compelling. Thank you for sharing your journey with MS. I also am an OT student, and saw that you mentioned interacting with many health care professionals with no bedside manner. That must be frustrating. Can you give some examples of bad bedside manner?

    • I would have to write an entire post to list all the example but personally? What I hate the most? Is being treated like an idiot/like what I think or know is childish and dumb. Like don't tell me there is nothing we can do when I ask "what about this treatment" and rather than trying it you flat out tell me you don't really like top follow the literature on it. Maybe a bad example but I know I am not alone in hating when people treat us, the patients, who have a CHRONIC illness, like we can't possibly ACTUALLY know something about a disease WE will live with for the rest of OUR lives,

  4. Will Hardy says:

    Your writing style is very compelling. Thank you for sharing your journey with MS. I also am an OT student, and saw that you mentioned interacting with many health care professionals with no bedside manner. That must be frustrating. Can you give some examples of bad bedside manner?

Leave a Reply

Your email address will not be published. Required fields are marked *