One Step at a Time

As I mentioned before, I am going through “a bit of a thing”. Multiple Sclerosis has consumed my life for the last few years and I am desperately wanting my own “non-MS” life. I know it’s a phase and maybe it’s one I need to go through but this transitional period of my life is tricky and frustrating to say the least. I am trying to get established and self sufficient but it’s so hard to know where to start when your stuck in a system that only wants to help you enough to survive and once you start moving forward from “surviving” to “growing” your obviously OK enough to be on your own. So I am just trying to breathe and take it one step at a time. I think it is too soon to come up with some “master plan” for setting up my life, right now I have to focus on moving forward just an inch at a time and soon I will build up enough momentum to move at a much faster pace but first? Small, strategic, moves.

School is obviously on my list of priorities not only for the sake of working towards something but also for the sake of rebuilding a social life… well… a life. A routine, a sense of responsibility, etc. But once again I have realized there is no way to jump right back in to school where I left off several years ago. The brain is like a muscle and as they say, “if you don’t use it you loose it”. If you sit in a chair for three years and never stand your legs will atrophy and become weak. Same with your brain; I have not been using mine and it has grown weak, I can feel it. Simple tasks stress my head out as if I was doing some complex mathematical task. It’s so hard to explain… As far as going back to school though, it’s like this; I am not just complaining that it’s too hard when I say I am not ready to jump back in, I am saying it’s too hard for my brain to complete such a task (if you look at my brain like a muscle that has grown weak.) If you didn’t use your legs for 3 years and they atrophied then it would be too hard to move a 50 pound weight across the room, not because you just don’t want to put the effort out, but because your muscles are not ready for such a task. My brain is not ready for too much schooling… I have to “stretch it out” a bit and like that Lumosity commercial says, “going to the gym is easy; you can work out any part of your body, but they don’t really have a machine for your brain” so I am still trying to figure out how to do that.

So I am working on my cognitive skills, I started taking LDN (Low Dose Naltrexone), I will be seeing another doctor next month about a non-MS related health issues that could be greatly contributing to my fatigue, I will be going back to physical therapy soon to work on my gate, I added those heal orthotic things to my shoes to help with the shock of my steps (huge difference), I am getting my eating and exercise habits down, and just overall trying to get my health situated and my body strong so that I can head back into the world with all I got. I start school in January (one class, math) and I will try to join a club if I can. I will also be trying to volunteer at the Kaiser down the street from my school and hopefully between all of that I can rebuild a social life and maybe make some connections that can help me get back into work. Eventually I will also try to start working on portrait photography again but I am not sure when. I just know I need hobbies that are not all on the computer…

Oh yeah, I am also trying to get in to see a therapist; 8 week wait! I know I am messed up and can’t deal with all this on my own anymore, but 8 weeks? Ridiculous!

Once I feel “stable” with myself and have a “non-MS” life I will start working on a speaking career again. Obviously speaking from memory is out of the question (I really messed up that last speech if you ask me) so I have to create a routine, memorize it, and build a slideshow to go with it. Then I will see where it takes me from there. Again, I am just trying to go slow, one step at a time, no rushing, because that is when I start getting depressed. I am not happy with my life right now and it’s really easy to stay “stuck” in depression but I have been there too many times so I know I need to be really meticulous about how I get all this done because it doesn’t take much to fall back down.

9 Responses to One Step at a Time

  1. Nikki says:

    I am so sorry you are feeling this way. I completely understand though. The thing about life is that you learn the truth about people when times get tough for you. Once you can no longer help them they forget about you. There seems to be no such thing as honor and loyalty anymore. At times it is very difficult to make an effort to better yourself because it all seems for not. I found myself ready to give up on Monday because I was tired of the bad nausea, vertigo, weakness in my entire right side. My husband had to snap me out of it. I still cannot grasp the concept of dealing with this for the rest of my life. You are such an amazing person and truth be told, a lot of my strength and perseverance comes from reading you blogs, past and present. God uses the lives of others to help those that are lost or in need. It may not be how we want to be used, but it is how he sees fit. Keep shining and inspiring Matt. Great things are going to come your way 🙂

  2. When you mention learning the truth about others, are you refering to my other post? Yeah it sucks, I have no more friends in real life, everyone has left. So that makes it hard, much harder then it should be, but it is what it is. That is why I just want to start a new life already, I am sick of being in between lives. And hey, if I didn't feel like my struggles were helping someone else then I would feel like my whole life was for nothing. That's what keeps me going with this MS stuff, the hope that it's helping someone else. Otherwise (again) all my suffering was/is for nothing.

  3. Anonymous says:

    8 weeks to see a therapist? Sounds about right under Obamacare.

  4. haha that has nothing to dod with the ACA, that's the network, I have united healthcare anyways. The ACA won't effect wait times, that a conservative MYTH at best!

  5. Anonymous says:

    Tell that to people in Canada where I live.

  6. Haha Canadian healthcare might be SIMILAR to the ACA but it's not really the same… Do you have MS?

  7. Anonymous says:


  8. Well, keep this in mind; If it was not for "Obama Care" I would have been kicked off my Dad's insurance before I had my major relapse that wound me up in a Rehab hospital. While I was there I couldn't breathe at one point and they had to hook me up with oxygen. I also lost the ability to swallow resulting in choking. I almost drowned in my own vomit because I did not have the strength to turn over on my own. Basically, I would most likely be dead if not for the ACA changes in law. So sure, it might not be perfect but it's definitely helping millions of people and it's not like the "old system" was anywhere NEAR perfect. I am sure the millions who have lived without health insurance and are getting it for the first time ever would rather wait a little (according to those who oppose the ACA) for help then not get help at all.

  9. Also, I would not be on Tysabri and all my medication which means I would still be stuck in bed/a wheelchair unable to do anything but waste life away and be a burden on society.

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