Did I Speak Too Soon or am I Just Being Impatient?

I already know the answer to that question but this is what I was asking myself yesterday. You see, I woke up around 3:00 am to use the restroom; just a typical night as I am sure many of you with Multiple Sclerosis can relate to. As I shut off the light and crawled back into bed I had to pause… My vision… Was it just in my head or was it actually just better than usual? I didn’t even notice while I was moving around but I wasn’t leaning against the walls or bracing myself on the counter! No… It’s late… I am tired… Surely this is all in my head… Well, I’ll just go back to sleep and see how things are in the morning.

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It was now 4:00 and I was wide-awake. I couldn’t stop thinking about this! What if today was the day that that tiny piece of scarred tissue in my brain healed just enough to finally allow that little electrical current to flow through the right pathways to my eyes? For that last hour I knew that all I had to do was turn on the light and see for myself but I have been trying really hard to get some decent sleep in the last few days and did not want to hinder that! But I was just waking myself up more and more by thinking about it; I was no longer tired and I pretty much felt like I was trying to take a nap after 2 cups of espresso so I just sat up, threw my covers off and turned on the light. My vision was not “back to normal” like I had imagined but it definitely seemed like it might be a tad better and when it comes to MS, better is better! Either way, I couldn’t remember the last time I woke up so early and didn’t feel like a zombie crawling out of the earth to see the light of day for the first time in years so it looked like my day was starting at 4:00 in the morning! But I didn’t have that hopeless feeling of insomnia; I felt like “today was going to be a good day”.

I went downstairs, brewed some coffee and turned on MSNBC. I had forgotten just how quiet the morning was! It was just me, the dark and the sipping of my coffee; and Joe Scarborough of course. A couple hours later I made myself breakfast, not the instant oatmeal I have been having since I got back from Colorado but some actual food. What I call a “scrambled omelet”; all the ingredients of an omelet but scrambled because I no longer have the necessary skills to make a proper one, but hey, it all tastes the same. After that, I took my dog for a walk which I have not done in forever! The morning air was brisk and I felt a lot more balanced than usual. Was I actually witnessing some improvement or was this all the result of a positive attitude? I didn’t care, I wanted to enjoy it while it lasted.

After that, I spent some time writing for Multiplesclerosis.net and even though it has not done anything for me since Lemtrada I took a couple Ritalin just to see. Now I am not sure if things would have turned out this way on its own or if the Ritalin actually got the gears in my head spinning a bit faster but all my thoughts seemed to flow a lot smoother than usual; it didn’t feel like I was forcing it out and so I actually had a hard time stopping!

This is where my day started falling apart. After I finished writing I turned away from the computer and whoa! Everything looked crazy again! Things were back to their super unstable state and I started feeling really tired. Was I fatigued from my vision or was my vision falling apart because of my fatigue? Well, actually, something I have been suspecting for a while now is that staring at a screen all day was somehow making my vision worse, something my neurologist said there was really no evidence to support but at this point? I think it is definitely a contributing factor, something that has been aggravating my vision at the least. As far as my symptoms nothing else really got worse besides my balance but that was obviously due to my vision. This did, however, affect my mood. That and a bunch of small things like the neighbor’s dogs who never stop yapping were just irritating my very soul! My internet was cutting in and out and my wireless headphones were playing nothing but static. Stuff like that… I was no longer having a good day.

Today I woke up at 5:00 am and once again I felt pretty good. Something I need to make clear though; when I say good I mean way better than life after Lemtrada but still not as great as before Lemtrada so really? I was feeling like “regular MS crap” which is way better than I have felt in the last six months or so! I had my coffee, breakfast, watered the garden but skipped out on a walk as I don’t want to overdue it out of excitement. As I am sitting here writing I can tell that my vision is clearly falling apart so I think it is safe to say that the computer definitely (for whatever reason) messes with my eyes.

So let’s get back to my initial question; did I speak too soon or am I just being impatient? I am just being impatient. I got too excited over finally seeing some positive progress and was just disappointed that it was not everlasting but the fact of the matter is I am seeing improvement. Even if I only feel decent until about noon that is still way more than I have had since Lemtrada and even if I am not certain that I FEEL better I know for a fact that I am DOING better because I am doing things I have not been able to do in a while. It has only been two days… nothings happens over night. I need to just be patient, keep doing what I am doing and see how things change. Simple. At least I can say that I think the relapse that my trip to Colorado induced is finally coming to an end.

13 Responses to Did I Speak Too Soon or am I Just Being Impatient?

  1. Josh says:

    Hello Matt, I have read a couple of your blog posts and I find it extremely enlightening to read about your journey. It is great to see that you are experiencing some form of progress, no matter how small it may be (progress is progress). I am an Occupational Therapy student and am curious what types of occupational therapy interventions you had experienced at Loma Linda Hospital? (if you are comfortable sharing, of course). Also I was hoping you could share any advice on working with people who are experiencing MS in the future. Thank you, and keep up the blog and a positive outlook on life!

    • Hi! I could better answer this if you were a tad more specific. I spent 6 weeks at East Campus and worked with PT’s, OT’s, Speech therapists, hand therapists, pretty much a little of everything haha. The number on thing they pushed, and that I push, is energy conservation. A patient may WANT to keep going but they have to learn when they are pushing their body/MS too far. I might get to a certain point and FEEL like I can keep going but if I do, even though I feel ok, I will pay for it. So a patient needs to learn where that sweet spot is and as an OT it’s important to help them understand that or else everything you work on building will be undone in an instance.

  2. MARLENE CASTANEDA says:

    Hey Matt,

    My name is Marlene and I too am an OT student at Loma Linda University. I truly enjoyed reading your blogs, I especially like the fact that they are easy to read and comprehend what your journey is like. Let me begin by saying that although we haven’t learned much about MS thus far I learned so much about it by reading some of your blogs so thank you for that. I was surprised to learn that the use of Ritalin helps out individuals with MS. Also, reading about Lemtrada was both fascinating and exhausting. Exhausting in all of its side effects. I have a few questions about this medication: Would you recommend it to other individuals with MS? Did you get sick more often due to it inhibiting your immune system?
    Reading about how you felt better at times but then felt worse (relapse) made me think about how long and how often you do in fact feel better. I know it differs from person to person, but in your case what is the longest you have felt better? Sorry to bombard you with all these questions.
    One last thing, I did a bit of research last quarter and read that some people with MS benefit from doing Tai Chi, specifically in a pool. Since your balance is affected I learned that people feel safer in the water due to its buoyancy. Have you tried this or know of anyone who has?
    Thank you once again for all of your knowledge and for sharing your experiences. I look forward to reading more in the future!

    Best, Marlene

    • Hi Marlene,
      I am glad you have enjoyed my blog, make sure to check out my old URL; mattsms.com as I was blogging there for years!

      I honestly can not say if I would recommend it or not YET, it’s just too soon for me to know if it helps or not. I have not got sick yet as I am now hyper vigilant about sanitation haha so knock on wood…

      It’s really hard to answer about “time periods of feeling better”, the only consistency of MS is it’s INconsistency BUT I was the most “stable” while on Tysabri for about 2 years.

      As far as any sort of water exercise, yes, it helps many people with MS, especially those pools with the current that you just walk against. Me personally? I am not a water person nor do I even have access to a pool anyways!

  3. hosea huynh says:

    Hi Matt,
    I am an OT student and was referred to your blog by my professors. Thank you for sharing your journey with MS. It was informative to see through the lens of an individual who is experiencing it. Your blogs were very descriptive and it drew me in. When you brought up the drug Lemtrada, I did not know what it was. After looking into the drug, I saw the side effects, and it seems intense!
    I read that you are experiencing sleeping issues, and your solution is to alter your diet. This I agree with, but are you visiting a dietician, or are you doing your own research for it? Also to help me treat my future patients who are experiencing MS, what can I do as an OT to better help you? What are you looking for when you have therapy sessions with an OT or any practitioner? Thank you so much for your time.
    I would like to encourage you to keep participating in activities that you love and to keep blogging. I am sure that your blog has helped many who are going through the same situation you are. It has been a blessing to read your blogs.. Thank you again Matt for your transparency. Best Wishes-Hosea

    • Hi,
      actually, the diet bit is just to overall feel better; for sleep I have been working with changing pre bedtime behavior and light (no computer/phone for an hour before and an hour before I dim the lights to help kick start melatonin production on my own). But yeah, Lemtrada was just my act of desperation. The possible benefits outweighed the risks to me. Honestly though? I have never seen an OT and gone home thinking “wow, I wish this this and that”, but I guess what is important is that it’s QUALITY time; most employers will want you to see so many patients in a day, a number of patients that you will hardly be able to fit in because an employer wants QUANTITY AND QUALITY and that doesn’t work in the real world, it’s either or and I don’t want to feel like a number on a chart, like you are coming in already rushing to get out.

  4. Leen says:

    Hi Matt!

    So I am yet another OT student that was referred here via my professors. 🙂 I just want to start by saying that I went ahead and looked through many of your posts and found myself truly inspired by your transparency. I sincerely feel that what you are doing here is beyond helpful and raising much needed awareness to those who have a “dark passenger”, those who don’t, and those who want to help diminish the presence of this dark passenger. You mentioned that one of the biggest OT interventions given to you was energy conservation. I know that it’s different for everyone, but what were some of those energy conservation techniques and which ones seemed to work best for you?

    Once again, love your blog and your transparency. Keep it up! I’ll be bookmarking this cite as a resource 🙂

  5. Angela Lee says:

    Hi Matt,

    My name is Angela and I am an OT student from Loma Linda University. Thank you for sharing how MS has affected your life. I could only imagine how much vision impacts your life. I suffer from vertigo very often and it is the worst feeling when your vision is unclear and how it severely impacts my day to day life. I cannot say that it comes anywhere close to your experience with MS but I do have a little understanding as to the impact of day to day living. As a future OT, what advice would you give to someone who is working with a MS client? I often feel that we are taught the basic skills of being a therapist treating MS, but understanding the day to day life of someone with MS is different. What was your experience working with OT’s? I hope it was a good experience, and thank you again for sharing.

    Sincerely,
    Angela

    • Hi! Sounds like these are questions you instructor may have asked you to ask because I was asked the same thing a couple times :p so let me copy and paste my previous answer; “…I spent 6 weeks at East Campus and worked with PT’s, OT’s, Speech therapists, hand therapists, pretty much a little of everything haha. The number one thing they pushed, and that I push, is energy conservation. A patient may WANT to keep going but they have to learn when they are pushing their body/MS too far. I might get to a certain point and FEEL like I can keep going but if I do, even though I feel ok, I will pay for it. So a patient needs to learn where that sweet spot is and as an OT it’s important to help them understand that or else everything you work on building will be undone in an instance.” – Also, it is important to know, MS patients are like snowflakes, no two are exactly the same regarding symptoms and symptom severity.

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