Making Some Changes to Keep Doing Better

So I am still doing pretty well, it’s nice, to finally not feel the super Lemtrada fatigue and instead feel the normal MS fatigue which by comparison feels great. For the last 6 months or so I have been going to bed when I start “shutting down” (usually around 8:00pm) and waking up whenever I wake up (anywhere from 7:00am to 9:00am). Lately, I have been going to sleep at 8:00pm and slowly waking up at about 4:00am but not getting up till 5:00am (I am a morning person) and I haven’t felt like I am forcing myself up. Because my brain starts waking up around 4:00am, by the time 5am rolls around I am wide awake and “bored” of lying in bed.

I am getting a lot more done because of this; it’s easier to do “chores” when you are not so fatigued and I have been taking my dog for a walk in the morning and working on our garden. For the last 6 months or so I have really just been lying around watching TV trying to not fall asleep.

Now I don’t want to jinx myself but I sort of feel like my vision is starting to slowly improve, a bit, enough that today on the way to my medical clinic I imagined I was driving and the road didn’t look all crazy; I could see everything pretty clear as well as look behind me as if I was going to merge and I had no problems! So I will give it a few more weeks to either improve or remain stable and if all is looking good I might start practice driving next month! I don’t want to rush it though; I want to be 100% certain that I am safe to drive. Either way, if this keeps up, I will most likely be driving by my “goal date” which is in about 4 months.

Now really all I can attribute to my improvement is time and better sleep. I am going to change my diet again, which will be much easier now that I have been doing some basic cooking. So no fast food, all whole grains, no white bread, no red meat, turkey everything, lots of fruit (in the form of smoothies) and I will try to cram vegetables into everything I can. I will also continue to work on some minor exercises (basically just continuing to move in some way shape or form) and possibly start a CBD supplement (the non-psychoactive component of cannabis that seems to cure pretty much everything haha). If there is a possibility it will help and I have reasonable access to it I will try it, I want to keep moving forward because the life I have been living for the last 6 months or so? With this vision specifically? Well, it doesn’t feel like a “life”.

Right now I am at Starbucks down the street from my medical clinic waiting for them to open so I can take care of some paperwork and do my blood work. I was supposed to do it yesterday but since both my parents work full time the soonest I could get down here was this coming up Monday so I decided to just get dropped off here on my Dad’s way to work as he works down the street from my clinic. This sort of goes to show how much better I am doing because even just a month ago I would have just waited until Monday but now? No, I told them I would try to come in today to do paperwork so if that means hanging out here all day until my Dad gets off work that is what I will do because I am tired of not being able to stay true to my word or get to appointments early like I like to. I am tired of living on someone else’s schedule and though the bus is a horrible idea with my compromised immune system I will still do what I have to do to make things happen; I am patient so I do not mind at all just chilling all day. I get what I want and this is really much easier on everyone else so I do not feel like a “burden”. At the worst, it’s something different to look at than my 4 walls at home.

So we will continue to see how I do since this improvement was sort of “out of the blue” to me and with all the health changes I plan on making it should be interesting in the next month or two. I will (maybe tomorrow) also try to get all my Lemtrada labs uploaded because they are kind of interesting to look at. I am also going to order my MRI on a disk today so I will be uploading some of those images too. Lastly, I will be doing a new YouTube video soon to update everyone on my Lemtrada experience as I sort of (not surprisingly) dropped the ball on that one. So until then, take care!

14 Responses to Making Some Changes to Keep Doing Better

  1. Britt Wallstrom says:

    I’ve been reading your blogs the last few days and playing catch-up. I’m so happy to hear that you’re starting to feel better. I’ve been wanting to leave a comment, but I feel that I have nothing useful or inspirational to say. I don’t have MS, so while I empathize, I don’t really know what you go through day-in and day-out. I just wanted to tell you that I admire your perseverance and even though sometimes things get rough, you’re strong and you have people outside the MS community that support you!

  2. Anonymous says:

    Hey Matt, glad to hear things are going better now. I have some sort of neuro disease as well. I’m 20, yet to be diagnosed with anything but it seems sort of chronic progressive with flare ups now and then. I don’t know for certain but based on family history of autoimmune stuff I likely have MS. I am very interested in CBD extract and it would be awesome to hear how you think it affects you.
    Keep on keeping on, man.

  3. Samantha Rowley says:

    Hello Matt! My name is Samantha and I am an OTS at Loma Linda University. First I wanted to say that your openness about your disease is inspirational. I feel it takes a lot of bravery to let others know your daily struggle. With that being said, I feel you are super motivated to manage your condition and to become independent. Additionally,you seem to be extremely knowledgeable about your condition and have a wonderful support system through your parents. I hope to hear that your new health changes will be helpful and beneficial!

    • Thanks and I have to live with this for the rest of my life, so I should know enough to be able to have an intellectual conversation with my doctor about it so I can make informed decisions haha right? Well that is me at least,

  4. Kimmy says:

    Hello Matt!

    We’re learning more about neuro diseases in school and we were turned to your blog for a better insight. And just wow!! you are one badass human being! I started blogging when I was sick with cancer and I have to say you have more willpower to do it than I did. Eventually, I just felt as if I was complaining all the time but came to realize that people actually read it (who woulda thunk!). Now, two years cancer free, I have so many people, young and old contacting me about themselves or a loved one who has/had/passed of cancer needing guidance or words of encouragement. I feel as if everything that you put here, is exactly that, too. So thank you so much for educating me and really telling it like it is without the sugar coat. Because I’m sure this whole journey has its share of downs but to see you saying that you’re feeling better is incredible. I can’t say that I knew exactly what you’re going through, but I know the waiting game, relying on your parents, finding which treatments will help the vertigo, getting irritated of blurry vision, hoping they’ll come up with a concoction that will just ease the pain just a bit (at least the nausea), the constant blood work, etc. Every day that you’re feeling stronger is another great day. I am rooting for you! I hope your journey continues to move up and forward!

    • Thank you, and wow, cancer, that is a battle! For me, yes, I was feeling better, and sure, I know I am better today than I was 6 months ago, but every day is still up and down. But feeling like regular crap is better than feeling like… super crap? But thanks!

  5. Brittany says:

    Hi Matt, I am happy that you are getting out of the house and getting things done because that always feels good! I am in OT school and something that we really look at as OT’s is the importance of healthy habits and routines. I think it is really awesome that you are pushing yourself while also putting yourself first. You have a great handle on things. Can’t wait to hear about how the CBD works out!

  6. Rolando Moran says:

    Hey Matt,
    I have been reading your blog and I can’t help but be inspired. I do not have first hand experience with MS, but I know people who have been affected by the disease. I’m glad that you have been feeling better and are able to have a somewhat “normal” experience day to day. Reading about MS out of a book or hearing it in lecture is one thing, but hearing it from someone who is experiencing it makes it more tangible in some ways. I hope others who read this feel inspired to look at people with MS differently because from the people I’ve met with the disorder and reading this has inspired me in different ways.

    • Thank you, and yes, that’s the thing, when I read about MS in textbooks all I ever think is “that is not how MS really is”. It takes personal stories to really highlight what living with MS is REALLY like.

  7. Kirstie says:

    Hey Matt! I’ve learned so much from reading several posts on your old blog and your new blog! You definitely seem well educated on MS, medications, secondary diagnoses, and symptoms. I think I might have to turn to you for advice if I come across someone who has MS. It’s great to hear that you are doing a lot better. It sounds like you’ve had quite the long journey for these past few years, and I just want to commend you for your courage and perseverance. Keep it up!:)

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