Be Back Soon; I Feel So Beat

First of all, I want to apologize for not blogging in ages. While I was having my Lemtrada infused I just felt too ill and tired to write so I did some videos. Afterwards, I was so fatigued for a week or two and though I was slowly feeling better my dizziness/vertigo/oscillopsia/whatever was getting worse. Now it is to the point where it is difficult to walk. Just trying to “navigate” around my room causes me to stumble and sometimes even fall (luckily I have a nice soft bed to land on). Even when I am perfectly still thing are swirling. It’s also like I just can’t focus my eyes! It’s horrible, I can not even explain it simply.

Anyways I just feel so defeated in life. I can’t catch a break with my health after about 8 months. Social Security finally decided that I do in fact still owe them that 25 thousand dollars because despite the information my doctor provided and notes he wrote they know what disability really is, better than a neurologist who has actually SEEN me. I am 25, I can barely walk, I can’t drive, I WANT to work but can’t, am struggling with my bills and Social Security doesn’t think I even deserve SSI. I don’t want to and will do everything I can to avoid filing for bankruptcy because I am only 25! But I am just so burnt out and can’t think of a better strategy yet… I keep trying to push myself to blog but I just do not have the energy or motivation to talk about my life right now…

I am going in for Solu-Medrol tomorrow which I have lost all faith in but what can I do? I did Lemtrada, lots of Solu-Medrol, Solu-Cortef, and IVIG. I have tried many other things in the past with no luck so after this, if I see no results, I have to start trying the alternative therapy stuff, mainly cannabis oil is what I am looking at but to get the stuff that has almost no THC and only CBD (no high) is expensive. But I am so desperate! I can’t live on like this so either I have to find a way to fix it or deal with it and I really do not WANT to just deal with it… So I don’t know, I am just living one day at a time till something changes and then I will have lots to write about.

For now? I am just taking it easy. So I hope everyone is doing well and I will be back as soon as I can. Be sure to check out MultipleSclerosis.net for my posts there, it’s much easier to write about MS when it does not revolve around my daily life.

16 Responses to Be Back Soon; I Feel So Beat

  1. S C says:

    Hang in there; you can get through this. I have been reading your past posts for information as my husband has MS. You are a stronger person than you think. Keep fighting, think positive ♥

  2. Unknown says:

    Be strong Matt. I know it's frustrating sometimes but sometimes we have to play the hand we're dealt. MS is bs.

  3. Hello Matt: My name is Janet. Thank you for sharing your journey. I am newly diagnosed with MS as of May 2015. I was watching one of your videos and learned that some of your symptoms are what I experienced when I first realized that something was not right with me. I was experiencing bouts of dizziness and my fingers on my left hand all of a sudden stop functioning when I was typing. I also had some slurred speech.

    I wanted to respond to your issue of receiving SSI but now having to pay it back. Please seek an attorney that handles social security disability cases. Usually, when you go it alone without an attorney the first time, you ultimately get denied, but when an attorney does it for you, it usually gets approved. If you haven't used an attorney yet, make sure it's an attorney that doesn't get paid unless you get paid. That's how a lot of them operate because I guess they know if they can win your case or not and they get paid from some of the back pay that is owed to you.

    Hang in there and stay strong! God doesn't put more on us than we can bear.

    • Yes, I had one, I was denied but given SSI and then 2 years later they want it all back. No attorney would touch me until they made a decision. Now that they did I should be able to find someone now, thanks!

  4. Unknown says:

    One thing that you must do when filling out the paperwork for social security is that you have to fill out the forms from the point of view of your worst day. I was initially denied first go around but was awarded on appeal. Hopefully that will be of assistance to you.

  5. Al Brown says:

    Hi Matt. I was just reading a bit more on your blog. I hope you feel better soon. I remember that I emailed you a couple of months ago and told you I was thinking of making a blog (something I have never done before). You emailed me back and told me to let you know if I did. So I did just make my first post on my new blog and I mentioned your name.

    • Wow has it already been "MONTHS"? What's the link to your blog?

    • Al Brown says:

      Matt, your sense of time is probably better than mine. Probably was a couple of weeks rather than months.

      I've only posted one introduction so far on my blog. My blog is http://alsartandms.blogspot.com/ . But at least it tells who I am. I've got to study up a little to learn how it all works. I'm a bit on an upswing now after achieving a couple of goals this year so I am hoping to continue. With MS I mostly lost muscle support around my lumbar like Dr. Terry Wahls talked about happened to her when she was in the anti-gravity wheelchair in her book before she got better. But I walk short distances. I drink a lot of the smoothies she talks about with the full fat coconut milk.

      It sounds like you got hit hard by this crap and I've only read a few things on your blog so far. I hope you feel better soon. Thanks for encouraging me to start a blog.

  6. Unknown says:

    Hi Matt,
    I just started reading your blog today. I was diagnosed in May 2000 when I was 29. I am curious if you have ever tried taking tumeric? I started taking tumeric supplements about 1 1/2 years ago. It has really helped me. If you haven't taken it, it might be worth trying. It's an all natural anti-inflammatory. I found out about it reading "Living Symptom Free with MS." This is a really good book with a lot of good information.

    I hope you get to feeling better soon!

  7. IvanaPoste says:

    Hi Matt,
    My name is Ivana and am currently an occupational therapy student. Can I just start off by saying how much I enjoyed reading your blogs from an education point. You wrote things here that as a student I don't get to learn about in class. You gave me some valuable insight and information into your life. I hope that I will be able to use this knowledge when I’m with potential clients. Reading some of your blogs on MultipleSclerosis.net was really inspiring and motivational for people dealing with the same diagnosis. However, if I can be frank with you I appreciated reading what you have wrote on mattms.com. I cant even imagine how hard it is to write about things that revolve around your daily life and the struggles that go with it. But reading some of your blogs gave me so much insight into your life. I appreciated reading about the good and the bad. Its the reality and the rawness of what you experience everyday and thats something I want to know as a therapist.
    Im so sorry you have to deal with these injustices within our health system. Just reading this infuriates me about how our system works. As an occupational therapy student how do you think we can change this or how can we help advocate for our clients?
    Thank you again!
    Ivana

    • Thank you but honestly I do not know. The best thing you can do is treat patients as people and not a number on a chart… It's hard to feel motivated to work towards improvement when you feel like an obstacle in the way of your therapist trying to finish a huge workload.

  8. Unknown says:

    Hey Matt, thank you for sharing your life stories with us. Your blogs are so real and actually show people the side of MS that they don’t want to think about. I found this quote that made me think of you and hopefully will be inspirational for you. “The strongest people are not those who show strength in front of us – but those who fight battles we know nothing about.” During our course, I had the opportunity to learn about MS, but it only scratched the surface. We learned that it can take up to 5 times more energy for a person with MS to do daily activities. You are strong, Matt! Keep working hard!

    • It's funny you mention the energy thing, I was reading on that a while ago, people do not get that that applies to EVERYTHING not just moving around. THINKING requires more energy! Being awake and just sitting down all day causes some of us to burn way more energy!

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