I want to start with a little explanation since I've gotten asked a few times about this. The question is "Why song titles?" and also "How do you chose your titles?" The answers are pretty simple.
If you go back to some of my original posts I explained how music has always been a huge part of my life. It has had a major impact on my life including my healing with MdDS. I listed to music a lot in the beginning of my diagnosis because I couldn't watch TV or Movies because the motion of the screens would worsen my symptoms. I couldn't read because the words would move around too much and cause major headaches, so all I could do was lay in bed and listen to music. As I started moving around a going in public I found that having music playing in my ears helped me concentrate on myself instead of the world around me. I was able to focus better on my tasks at hand instead of what the was going on all around me. It helped me learn how to walk without looking drunk. Finding a focal point in front of me and using the beat of the music for placement of my feet made walking so much easier. I still use this tactic on my lower symptom days.
I pick song titles for their lyrics or how the song makes me feel at the time. The lyrics could not pertain to me at the time but the score motivate me to move of feel a certain way. Sometimes lyrics speak to that part of my life. What I'm trying to accomplish, what I'm feeling, who is around me. I chose them based on what I want to talk about or how I'm feeling that day. So I'm going to start explaining the song choices because I typically don't explain why they are the titles of the post and who knows, it may inspire someone else.
So my post today:
I got through a whole week of work after being stuck at home for two weeks down & out. I pushed this week to do what needed to get done. I was able to work everyday for full days. I came home and was able to edit a few books this week and get a couple of press releases typed up. I worked hard this week and I'm so proud of myself.
I finished this week by walking around Mt. Trashmore with one of my co-workers. It was such a gorgeous evening to get out and get moving. Last week this time I was barely moving around my room and now I'm walking around a for a hour after working an 8 hour day.
I feel amazing. I feel strong. I feel proud.
I also have been searching for new music to listen to and have come across some amazing songs and artists. It's inspiring to me. It makes me want to move around more and write more.
I am hoping that this is a start of me getting back in the habit of writing again. I have really missed it. I forgot how much getting the good & bad out in my own words makes me feel so much better. It's a part of who I am.
So my song choice for today is "Fight Song" and it is about not giving up. No matter what is going on in your life or if anyone else doubts you, you keep fighting for yourself. You push through and become who you are supposed to be. There is a lyric that says "This is my fight song, take back my life song, prove I'm all right song....'cause I've still got a lot of fight left in me." I'm a fighter. Even when I'm feeling at my lowest of lows, I still fight to do what I need to do. I do my exercises no matter how many times I fall down. I practice reading and writing even when the words move around. I push to do even three stairs in my house, but I do it. I'm not giving up. I'm going to keep fighting.
~Sara
Friday, July 24, 2015
Monday, July 20, 2015
"Cheerleader" Felix Jaehn Remix Radio Edit-OMI
Social media has become a day to day event for most of society these days. There are so many avenues with Facebook, Twitter, Snapchats, Instagram, YouTube, YouNow, etc. So many ways to meet new and interesting people. So many different kinds of cultures, societies, lives.
But how does this affect me and those with MdDS? It's a huge part of us. With a disorder so rare that it is barely recognized in the medical world, it helps to be able to easily reach over borders and seas to find others who suffer the same. In just the last few words more and more people are finding our groups and realizing that they are not the only ones who have this frustrating disorder.
It's a place for education. A place to throw out ideas and suggestions for treatments. Coping mechanisms and exercises to help pull through some of the worst moments of having MdDS. We can discuss ideas to bring up to physicians and medical educators and even our government in recognizing this disorder.
It's a place to promote. A place to set up rallies, events, walks. A place to bring out new research studies that are being performed. Notify about petitions or letters to the government for recognition.
It's a place for understanding. I mean this in a sense of support groups not only being set up for those specific to the group, but also those who support the people who are part of the group. Friends & family who join in the conversations to learn more help the group as well. Although they are not suffering with MdDS, they can get a feel for what others who do are feeling. They can also learn more about the disorder.
It's a place for friendships. Like I said early, to be able to log onto anyone of the aforementioned websites and connect around the world with others who are literally on the same boat as myself makes me feel not so alone. These women & men who are fighting the same battle as myself takes the isolation of this disorder away. They help you not feel so crazy when you are having a bad day with your symptoms.
It's a place for support. Ok, well yea, they aren't called support groups for nothing. But seriously....those days where you are at your lowest of lows, to be able to get onto the group and post a long rant of frustration without any judgement, just to get those feelings out into the open and out of your own head. Then you receive multiple messages back stating, "We will get through this," "We are here for you." "We will fight and pull through." We, We, We, never you. Never just you. Because 'We' are in this together. The best part is your support group is available 24/7. No matter when you need them, there is always someone available to talk with.
So if you are part of a group already or thinking to join, what is my advice? Be active. Introduce yourself to your group by including information about yourself (if you feel comfortable). You don't have to do this as soon as you join, but try to do it within the first week. Respond to posts that you feel you can relate to or have advise for. Post your own situations. It's kind of like being in class, no question is a stupid question, no feeling is a stupid feeling. More than likely, someone else is going through the same thing or they have gone through it. Don't just post about bad, post good too. For some, seeing that others had a good moment in a typically bad situation helps a person to see their own light at the end of a dark tunnel. The point is to connect to people. Be a part of a bigger world.
~Sara
Monday, July 13, 2015
"Nuvole Bianche"~Ludovico Einaudi
I need to write. I need to write it all out. Its been too long. So here goes....
Last Sunday we had a massive thunderstorm come through our area. This is after the week before being off & on stormy weather. The one on Sunday, however, threw me over the edge. I have been in bed since then. I've done everything I can to be able to move and function with no luck of getting back to my normal. I tried going to work on Wednesday and lasted about 3 1/2 hours before having to leave. I wasn't able to focus. I could barely walk without the help of leaning on the walls.
I got home Wednesday and I had a massive pity party. Well not massive but I wanted to yell at someone. I needed to cry at someone. Well not at them specifically, I just needed to get it all out of me. The frustrations & anxiety & stress that comes with this sometimes debilitating disorder. I needed to cry. So I did. To my amazing husband. And even though he was stuck at work and couldn't be physically there for me in that moment. He just let me go. He let me cry it out. I needed to yell. So I did. Well, via messages to friends & family that were available to chat. Even after hitting send, I felt so much better. So of course my long message followed up with an "I'm sorry about that. I needed to AHHH for a moment. You can ignore that. LOL" But they didn't. They continued to listen, continued to ask questions and they were just patient with me as I processed everything that I was feeling.
Saturday I tried to go to the store with my husband. I felt like a drunk person falling all over the place....Yea, it was really bad. I had severe anxiety thinking that I was going to just destroy the store if I fell over. I couldn't walk straight at all. I pushed the cart but it didn't seem to help. I had to grab shelves at certain points, and also hold on to the husband as well.
Sunday rolls around and I need to get out of my house. I need to focus on something besides my bedroom walls, my disorder, my tablet. I need a change of scenery. I went to my Pop's house, the kiddos same with their cousins. I bathed to the pooch with a lot of help from my sister & my mom. I was up out of bed for about 4 hours or so. By the time I got home I was really miserable. I was holding back tears because I knew I had to call my boss and tell her that once again I was stuck, that I'm not better and I'm struggling. Worst part of the day, but also the best because I have amazing co-workers & bosses that understand that this can happen. They are not judgmental. They care. And that matters so much to me. Words cannot describe how I feel with all of the support around me when I'm in this situation.
So I've spoken about it before, how this disorder doesn't just make you off balanced but it causes a ton of mental issues. I get really bad anxiety, I stress out, I go through a type of mild depression with it, and in some situations I may even have a panic attack or 5. It can destroy you if you let it. It is an awful feeling. You worry so much about things that are unfortunately out of your control, but you can't help feeling this way.
So then I worry what the people around me think. I know I shouldn't but I do. People are very judgmental and it can crush you. Also, when you are in crowded spaces, it can cause anxiety for many reasons. You don't know which path you are going to fall and God forbid someone jumps out & cuts you off. Catastrophe waiting to happen. Its a miserable feeling.
For me, when the episodes are bad, I go back to setting minor goals to accomplish each day. And I have tried that. So far most of the goals haven't been successful, but some have. Its hard not to feel like a failure when it doesn't go as I planned. That's one of my biggest issues right now. I KNOW I'm not a failure, but you can't help but feel that way. So its more added stress on top of the crushing anxiety. But I'm fighting through it. Just like I've done each time in the past. I keep setting up new goals. And as long as I can accomplish at least one of those goals a day, I'll feel much better. I'll be able to do much more each day until I'm once again back to my normal.
But while being stuck in my bed, I started playing around on YouTube. I have found all kinds of awesome videos; however, I found an amazing video which led to another video of his partner. The videos explains the feelings that I have been having in other ways for people to understand. The first video is of Mark E. Miller. A YouTube vlogger who films his everyday life of himself, his partner Ethan, and their pup. His video "The Feelies" hit me pretty hard. I caught this video at just the right time. Then I kept searching and ended up finding that his partner, Ethan Hethcote, spoke from his own experience with anxiety in his video "Let's Talk".(See both videos below & the links to their YouTube sites). Both videos express how people have these feelings of anxiety and how to deal with those feelings.
I agree with both guys in that this is something that you need to talk about when you feel this way. Find someone who is supportive. They may not completely understand exactly what you are going through, but in some way they have probably had their own experiences. And even if they can't relate to what you are saying, they can at least be there to listen. Don't bottle up the feelings. Anxiety is a difficult subject for some to speak up about. You feel lost inside of yourself. You feel overwhelmed. But, just like it is okay to laugh at life, it is also okay to cry, scream, get frustrated. Its normal. Its human.
So I know this blog was long winded, but its one that I've wanted to write since Wednesday. Its something that I've needed to say. I needed to talk about it.
So thanks for reading. Check out the guys' videos. Good night!
~Sara
MarkE Miller YouTube
Ethan Hethcote YouTube
The link that Ethan talks about: http://bringchange2mind.org
Last Sunday we had a massive thunderstorm come through our area. This is after the week before being off & on stormy weather. The one on Sunday, however, threw me over the edge. I have been in bed since then. I've done everything I can to be able to move and function with no luck of getting back to my normal. I tried going to work on Wednesday and lasted about 3 1/2 hours before having to leave. I wasn't able to focus. I could barely walk without the help of leaning on the walls.
I got home Wednesday and I had a massive pity party. Well not massive but I wanted to yell at someone. I needed to cry at someone. Well not at them specifically, I just needed to get it all out of me. The frustrations & anxiety & stress that comes with this sometimes debilitating disorder. I needed to cry. So I did. To my amazing husband. And even though he was stuck at work and couldn't be physically there for me in that moment. He just let me go. He let me cry it out. I needed to yell. So I did. Well, via messages to friends & family that were available to chat. Even after hitting send, I felt so much better. So of course my long message followed up with an "I'm sorry about that. I needed to AHHH for a moment. You can ignore that. LOL" But they didn't. They continued to listen, continued to ask questions and they were just patient with me as I processed everything that I was feeling.
Saturday I tried to go to the store with my husband. I felt like a drunk person falling all over the place....Yea, it was really bad. I had severe anxiety thinking that I was going to just destroy the store if I fell over. I couldn't walk straight at all. I pushed the cart but it didn't seem to help. I had to grab shelves at certain points, and also hold on to the husband as well.
Sunday rolls around and I need to get out of my house. I need to focus on something besides my bedroom walls, my disorder, my tablet. I need a change of scenery. I went to my Pop's house, the kiddos same with their cousins. I bathed to the pooch with a lot of help from my sister & my mom. I was up out of bed for about 4 hours or so. By the time I got home I was really miserable. I was holding back tears because I knew I had to call my boss and tell her that once again I was stuck, that I'm not better and I'm struggling. Worst part of the day, but also the best because I have amazing co-workers & bosses that understand that this can happen. They are not judgmental. They care. And that matters so much to me. Words cannot describe how I feel with all of the support around me when I'm in this situation.
So I've spoken about it before, how this disorder doesn't just make you off balanced but it causes a ton of mental issues. I get really bad anxiety, I stress out, I go through a type of mild depression with it, and in some situations I may even have a panic attack or 5. It can destroy you if you let it. It is an awful feeling. You worry so much about things that are unfortunately out of your control, but you can't help feeling this way.
So then I worry what the people around me think. I know I shouldn't but I do. People are very judgmental and it can crush you. Also, when you are in crowded spaces, it can cause anxiety for many reasons. You don't know which path you are going to fall and God forbid someone jumps out & cuts you off. Catastrophe waiting to happen. Its a miserable feeling.
For me, when the episodes are bad, I go back to setting minor goals to accomplish each day. And I have tried that. So far most of the goals haven't been successful, but some have. Its hard not to feel like a failure when it doesn't go as I planned. That's one of my biggest issues right now. I KNOW I'm not a failure, but you can't help but feel that way. So its more added stress on top of the crushing anxiety. But I'm fighting through it. Just like I've done each time in the past. I keep setting up new goals. And as long as I can accomplish at least one of those goals a day, I'll feel much better. I'll be able to do much more each day until I'm once again back to my normal.
But while being stuck in my bed, I started playing around on YouTube. I have found all kinds of awesome videos; however, I found an amazing video which led to another video of his partner. The videos explains the feelings that I have been having in other ways for people to understand. The first video is of Mark E. Miller. A YouTube vlogger who films his everyday life of himself, his partner Ethan, and their pup. His video "The Feelies" hit me pretty hard. I caught this video at just the right time. Then I kept searching and ended up finding that his partner, Ethan Hethcote, spoke from his own experience with anxiety in his video "Let's Talk".(See both videos below & the links to their YouTube sites). Both videos express how people have these feelings of anxiety and how to deal with those feelings.
I agree with both guys in that this is something that you need to talk about when you feel this way. Find someone who is supportive. They may not completely understand exactly what you are going through, but in some way they have probably had their own experiences. And even if they can't relate to what you are saying, they can at least be there to listen. Don't bottle up the feelings. Anxiety is a difficult subject for some to speak up about. You feel lost inside of yourself. You feel overwhelmed. But, just like it is okay to laugh at life, it is also okay to cry, scream, get frustrated. Its normal. Its human.
So I know this blog was long winded, but its one that I've wanted to write since Wednesday. Its something that I've needed to say. I needed to talk about it.
So thanks for reading. Check out the guys' videos. Good night!
~Sara
The link that Ethan talks about: http://bringchange2mind.org
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