I got stuck tonight. I was trying to find a new song so I could write again tonight. But I couldn't find anything that really hit me for a song. So then I went through every blog I have written and made a playlist using all the songs. So I actually got to hear a lot of the music that I haven't listened to in a while and it helped.
I got stuck again because then I didn't know what I wanted to write. I wanted to write about my faith and how its pulled me through some of the harder times. Then I thought I would write about my support but I've definitely focused on that through many posts. So then I went through and read what I've already done.
It all of sudden hit me as a song started playing....Do you ever hear a song or see something and you flashback to a time in your life that you didn't remember a second ago, but that moment, that lyric, that picture took you right back to that spot in time. I get it sometimes when I pass a certain road, see a picture of something or someone, but it really hits with music.
Like I've said before, I have this crazy connection with music. Its like my memory is attached to certain songs. I can flashback to middle school dances, dance routines from recitals growing up, high school parties and car rides with friends, to parties in college and trips with my sorority sisters. I've even remembered tests that I've studied for because of using the music to remember details. I remember taking drives to see family or friends, hanging out with family or friends. Dancing with my kiddos or seeing them dance on their own.
Some of the songs I heard took me back to those posts that I've had before. Those really hard days that I didn't want to write, but I did because I made myself a promise to write the great, the good, the bad, and the really ugly. It was just as important to write about the good as it was the bad because I can look back and see all that I've accomplished.
Its been 3 1/2 years of insanity and it continues everyday. I have gone through short periods of no symptoms, but its been awhile since I went more than a few days without symptoms. I usually have at least one or two of them everyday. I can handle one or two at a time, its when all the symptoms starting hitting me at once. But I've survived worse. I've overcome a lot of obstacles and I will continue to do so. As long as I have my earbuddies and an infinite playlist of songs, I'll be set to face whatever MdDS wants to bring me.
Monday, December 28, 2015
Sunday, December 27, 2015
"Oceans (Where Feet May Fail)"~Hillsong United
A lot has happened the last few months that has been extremely challenging for me. Its been a pretty hard struggle. One that I haven't had to deal with in a very long time, but its something that has been progressing over the last few years and I finally broke. I promised in the beginning that I would be honest here, talking about the good, the bad & the ugly of my life with MdDS...so (deep breathe) here we go....
I've talked about the crazy physical symptoms that come with MdDS. You have the rocking, swaying, motion side of things. You have the visual & inner ear struggles that vary on each patient. You have the headaches, the migraines, the brain fog. All the joys of MdDS and what we must face every day. I've talk about the nausea, motion sickness, and also the anxious feelings you get when surrounded by a large crowd.
What I want to talk about is my struggle that has been become more prevalent the last few months. I've seen people post on our support groups about it a lot. Its something that people without MdDS feel. Its something that I've dealt with in the past. Its something that I know a lot of people who have suffered from it, but its also something that people are ashamed to talk about. You feel less, you feel alone, you feel out of place. Its depression. Its anxiety. Its panic attacks. Its insane (but not really).
So I've been dealing with this for a long time behind my own walls. I've been struggling to be happy and okay with the way things are, but I eventually cracked a few months back. Depression for me is a very scary problem. It was scary when I dealt with it back in high school and college. Its even more so now. Its a struggle to get up and out of bed on some days. And for a very short period of time I didn't. I stayed in bed, not moving. I was beginning to give up on everything. I was breaking the hearts of people closest to me because of it. I was hurting them all while continually hurting myself. You can't just snap yourself out of it even though you want to. You push everyone away, when what you need to do is pull them closer. When I hurt like this, I end up saying and doing things that not only hurt myself but those around me.
The day my world cracked....
I was home being mom & wife. Dealing with kids & house & husband and I snapped on one of the kids for no reason. I don't even remember what it was about, maybe not picking something up in the living room, or cleaning up after breakfast. The point was it was nothing that warranted me yelling the way that I did to them. The words that flew from my mouth were not me. When my husband asked, "What is wrong with you?" I lost it. I screamed and yelled and finally broke down crying constantly repeating "I don't know." as I collapsed to the floor there in the middle of my kitchen. I just cracked. I cried uncontrollably. Something was wrong but I couldn't verbalize it. I couldn't explain the feelings I was having, but they were scary.
The next day I remembered trying and forcing myself out of bed. I went to lunch like I usually do with my mom & grandfather. But the minute I got home I went to bed and never got out. I stayed there all day and slept most of the day away. When I was awake, I cried. At this point it wasn't the harsh sobbing, but a constant roll of tears down my face.
The day my world exploded.....
I tried to go to work. I made myself get up. I forced myself into the shower and then to get dressed. I barely pushed my kids out the door to get them to the babysitter. I don't really remember even dropping them off that morning. I do remember starting to head to work and getting on the interstate. I was coming close to the exit to change from one interstate to the other when all of a sudden I couldn't breathe. My hands started shaking and my vision was tunneling. I pulled over and knew that I was going into full blown panic attack. I knew I had to calm down. I had to get off the interstate and I needed help fast. I took deep breaths, slammed my music on really loud and started breathing to the rhythm of the songs that played. I calmed enough to get on the phone for help. I immediately got on the phone with a psychiatrist's office and set an appointment up for about an hour after all this started. I called my husband to tell him what happened and then work to let them know what was going on.
I went to the counselor. I was with her for over an hour & a half. When I was done I called my husband again and he met me at home. I stayed there for the rest of the day not leaving my room.
My world gets a bandaid....
Over the next several weeks I have gone to see my counselor. I start my week off in her office every Monday morning like clock work. I'm working through a lot of the issues that I have in my mindset. I understanding why I feel certain things and how to change those thoughts into something better. I'm communicating more with those around me. My husband, kids, family. My friends. My co-workers & bosses. I can't take meds for depression or anxiety as they alter my personality too much, so I work on certain areas of thought and ideas of coping to make things better.
I'm learning that the anger, frustration, anguish, sadness, lonliness, sense of loss, all comes with losing a part of who you once were. Its all part of the grief of losing. And its okay to feel those. I don't have to hid it, or pretend like its okay. I'm trying to be more open about it and not ashamed. I'm trying to vocalize my thoughts so they don't build up and explode.
Its taken me a while to brave writing about it and putting those feelings out there. But I know others are going through similar feelings. Even if its not with MdDS but other parts of life. It is an everyday struggle. You have to the good and the better days but you still have those harder, sadder days. It doesn't just disappear and go away. I have to work at it and that is okay. And if this blog helps even just one person, then I've done what I've set out to do.
So the song choice...I came across this song just shortly after my world explosion. I came on one of my playlists through Spotify and I've heard it a few times since then and it's helped me feel a little stronger each time I hear it. Dealing with depression & anxiety you feel like you are drowning in your own world. But I'm working on getting my head more & more above water, through my faith, my family, & my friends. I'm taking each day as it comes. I'm working on myself each day. And one day, I'm going to be better, I'm going to be myself, I'm going to be stronger.
I've talked about the crazy physical symptoms that come with MdDS. You have the rocking, swaying, motion side of things. You have the visual & inner ear struggles that vary on each patient. You have the headaches, the migraines, the brain fog. All the joys of MdDS and what we must face every day. I've talk about the nausea, motion sickness, and also the anxious feelings you get when surrounded by a large crowd.
What I want to talk about is my struggle that has been become more prevalent the last few months. I've seen people post on our support groups about it a lot. Its something that people without MdDS feel. Its something that I've dealt with in the past. Its something that I know a lot of people who have suffered from it, but its also something that people are ashamed to talk about. You feel less, you feel alone, you feel out of place. Its depression. Its anxiety. Its panic attacks. Its insane (but not really).
So I've been dealing with this for a long time behind my own walls. I've been struggling to be happy and okay with the way things are, but I eventually cracked a few months back. Depression for me is a very scary problem. It was scary when I dealt with it back in high school and college. Its even more so now. Its a struggle to get up and out of bed on some days. And for a very short period of time I didn't. I stayed in bed, not moving. I was beginning to give up on everything. I was breaking the hearts of people closest to me because of it. I was hurting them all while continually hurting myself. You can't just snap yourself out of it even though you want to. You push everyone away, when what you need to do is pull them closer. When I hurt like this, I end up saying and doing things that not only hurt myself but those around me.
The day my world cracked....
I was home being mom & wife. Dealing with kids & house & husband and I snapped on one of the kids for no reason. I don't even remember what it was about, maybe not picking something up in the living room, or cleaning up after breakfast. The point was it was nothing that warranted me yelling the way that I did to them. The words that flew from my mouth were not me. When my husband asked, "What is wrong with you?" I lost it. I screamed and yelled and finally broke down crying constantly repeating "I don't know." as I collapsed to the floor there in the middle of my kitchen. I just cracked. I cried uncontrollably. Something was wrong but I couldn't verbalize it. I couldn't explain the feelings I was having, but they were scary.
The next day I remembered trying and forcing myself out of bed. I went to lunch like I usually do with my mom & grandfather. But the minute I got home I went to bed and never got out. I stayed there all day and slept most of the day away. When I was awake, I cried. At this point it wasn't the harsh sobbing, but a constant roll of tears down my face.
The day my world exploded.....
I tried to go to work. I made myself get up. I forced myself into the shower and then to get dressed. I barely pushed my kids out the door to get them to the babysitter. I don't really remember even dropping them off that morning. I do remember starting to head to work and getting on the interstate. I was coming close to the exit to change from one interstate to the other when all of a sudden I couldn't breathe. My hands started shaking and my vision was tunneling. I pulled over and knew that I was going into full blown panic attack. I knew I had to calm down. I had to get off the interstate and I needed help fast. I took deep breaths, slammed my music on really loud and started breathing to the rhythm of the songs that played. I calmed enough to get on the phone for help. I immediately got on the phone with a psychiatrist's office and set an appointment up for about an hour after all this started. I called my husband to tell him what happened and then work to let them know what was going on.
I went to the counselor. I was with her for over an hour & a half. When I was done I called my husband again and he met me at home. I stayed there for the rest of the day not leaving my room.
My world gets a bandaid....
Over the next several weeks I have gone to see my counselor. I start my week off in her office every Monday morning like clock work. I'm working through a lot of the issues that I have in my mindset. I understanding why I feel certain things and how to change those thoughts into something better. I'm communicating more with those around me. My husband, kids, family. My friends. My co-workers & bosses. I can't take meds for depression or anxiety as they alter my personality too much, so I work on certain areas of thought and ideas of coping to make things better.
I'm learning that the anger, frustration, anguish, sadness, lonliness, sense of loss, all comes with losing a part of who you once were. Its all part of the grief of losing. And its okay to feel those. I don't have to hid it, or pretend like its okay. I'm trying to be more open about it and not ashamed. I'm trying to vocalize my thoughts so they don't build up and explode.
Its taken me a while to brave writing about it and putting those feelings out there. But I know others are going through similar feelings. Even if its not with MdDS but other parts of life. It is an everyday struggle. You have to the good and the better days but you still have those harder, sadder days. It doesn't just disappear and go away. I have to work at it and that is okay. And if this blog helps even just one person, then I've done what I've set out to do.
So the song choice...I came across this song just shortly after my world explosion. I came on one of my playlists through Spotify and I've heard it a few times since then and it's helped me feel a little stronger each time I hear it. Dealing with depression & anxiety you feel like you are drowning in your own world. But I'm working on getting my head more & more above water, through my faith, my family, & my friends. I'm taking each day as it comes. I'm working on myself each day. And one day, I'm going to be better, I'm going to be myself, I'm going to be stronger.
Monday, August 24, 2015
"Photograph"~Ed Sheeran
Figured I needed to write and catch up with the world.
So to say I've been busy is an understatement. As you know, I've been working full time, but did you know I have two side jobs that I do? I also type press releases for a friend's company and edit books for some author friends. I love the writing & editing aspects because I love the written word (obviously...um hello there blog). I've also been studying for a Medical Billing Certification that I've had trouble passing due to anxiety issues. I've gotten better at working through those, but it is still a very difficult for me during certain events. I'm also getting ready for a new Girl Scout season to start. I'm a leader of a multi-level troop which means my girls range in age from 1st grade to 5th grade. So lots of projects there. Then there is me being a mom of a 10 & 7 year old who are getting ready to start their school years in two weeks. Oh and let me not forget that we are taking a family vacation for 5 days to Tennessee, so there is planning for that. There is also the anxiety of another mountain trip, but I really want to make this trip. I am so very excited about it and can't wait to spend the time with my family.
So again, I've been busy is an understatement. But through all of the craziness, I've been feeling pretty good. I've had some small episodes, especially when some major storms came through the area, but other than that I've been really good. I've been making sure to get plenty of rest. I'm not stressing over the small stuff as much as I usually do. I've taken time for myself by reading as much as I can to have quiet time. I also have been listening to more music which has helped me stay relaxed.
Its definitely tough to find things to help you cope with everyday life when you have MdDS, but you find what works for you. Part of feeling better is trying to stay calm through the storms. Finding ways to relax that don't trigger symptoms. My favorite place to go shockingly is either the beach or pool. Why not rock in a place where you are actually supposed to rock? I actually love walking in sand. I move the way my brain wants me to, and if I fall, it doesn't hurt. The water is a place to just be able to just be. I don't get in the pool when there are a lot of people. I usually do this when its just my husband and myself so that I don't have the extra movement from the kids splashing. The ocean water is a little different. I don't go out in rougher seas, but when its really calm small waves. It actually helps my body relax a lot. Plus sitting in the sun and just getting that added Vitamin D definitely makes me feel much better.
I also read. I do this by using an e-reader. I adjust the line spacing, font size and style and the brightness. I also read short stories on my harder days. This makes me feel like I've accomplished something. If I'm feeling really good I'll read the longer novels since I'm able to concentrate longer.
I listen to music as well. I alternate between either my headphones that cover my ears completely. These noise cancelling headphones help block out the rest of the world as I relax. I also use an ear bud that fits inside my ear canal. These softer buds help when I'm dealing with ear pressure. I know it sounds weird. For most people these types of earbuds bother most people with ear conditions, but for me they actually have the opposite affect. They help balance the pressure feeling in my ear. I typically use these more in public as I can hide the cords under my shirts. They don't get in the way of what I'm doing. Also I'm able to just use one if I need to be able to hear my surrounds and the people around me. The music helps me stay focused in chaotic situations while still being somewhat involved in the situations around me.
Through the craziness of life I have found what works for me. I hope that other MdDSers have found what works for them.
~Sara
So to say I've been busy is an understatement. As you know, I've been working full time, but did you know I have two side jobs that I do? I also type press releases for a friend's company and edit books for some author friends. I love the writing & editing aspects because I love the written word (obviously...um hello there blog). I've also been studying for a Medical Billing Certification that I've had trouble passing due to anxiety issues. I've gotten better at working through those, but it is still a very difficult for me during certain events. I'm also getting ready for a new Girl Scout season to start. I'm a leader of a multi-level troop which means my girls range in age from 1st grade to 5th grade. So lots of projects there. Then there is me being a mom of a 10 & 7 year old who are getting ready to start their school years in two weeks. Oh and let me not forget that we are taking a family vacation for 5 days to Tennessee, so there is planning for that. There is also the anxiety of another mountain trip, but I really want to make this trip. I am so very excited about it and can't wait to spend the time with my family.
So again, I've been busy is an understatement. But through all of the craziness, I've been feeling pretty good. I've had some small episodes, especially when some major storms came through the area, but other than that I've been really good. I've been making sure to get plenty of rest. I'm not stressing over the small stuff as much as I usually do. I've taken time for myself by reading as much as I can to have quiet time. I also have been listening to more music which has helped me stay relaxed.
Its definitely tough to find things to help you cope with everyday life when you have MdDS, but you find what works for you. Part of feeling better is trying to stay calm through the storms. Finding ways to relax that don't trigger symptoms. My favorite place to go shockingly is either the beach or pool. Why not rock in a place where you are actually supposed to rock? I actually love walking in sand. I move the way my brain wants me to, and if I fall, it doesn't hurt. The water is a place to just be able to just be. I don't get in the pool when there are a lot of people. I usually do this when its just my husband and myself so that I don't have the extra movement from the kids splashing. The ocean water is a little different. I don't go out in rougher seas, but when its really calm small waves. It actually helps my body relax a lot. Plus sitting in the sun and just getting that added Vitamin D definitely makes me feel much better.I also read. I do this by using an e-reader. I adjust the line spacing, font size and style and the brightness. I also read short stories on my harder days. This makes me feel like I've accomplished something. If I'm feeling really good I'll read the longer novels since I'm able to concentrate longer.
I listen to music as well. I alternate between either my headphones that cover my ears completely. These noise cancelling headphones help block out the rest of the world as I relax. I also use an ear bud that fits inside my ear canal. These softer buds help when I'm dealing with ear pressure. I know it sounds weird. For most people these types of earbuds bother most people with ear conditions, but for me they actually have the opposite affect. They help balance the pressure feeling in my ear. I typically use these more in public as I can hide the cords under my shirts. They don't get in the way of what I'm doing. Also I'm able to just use one if I need to be able to hear my surrounds and the people around me. The music helps me stay focused in chaotic situations while still being somewhat involved in the situations around me.
Through the craziness of life I have found what works for me. I hope that other MdDSers have found what works for them.
~Sara
Wednesday, August 12, 2015
"Fear"~Blue October
OK, so this song has been stuck in my head for two days and the more I listen to it, I had to write about it.
So first let me just talk about the video (which may be hard for MdDSers to watch) But the fact that he is singing these words out into a really rocky ocean spoke even more volumes to me. The lyrics talk about falling emotionally and mentally, however for us MdDSers getting back up from a literal fall is just has hard to to. To scream these lyrics out into the world the way that Justin's voice carries is amazing.
Alright, so the lyrics. He basically is singing about pushing through and getting back up and moving on. You don't have to fear anything. You can push through and be okay on the other side. There is light on the other side even when you feel like you are in a dark place. Its about believing in yourself when you didn't think that you could.
"Been running from a pain in me, A feeling I don't understand, Holding me down"
To be told there is no cure, there is no treatment to make your life go back to "normal" and that you will have to adjust to your new "normal" is some of the worst words you can be told. This goes for more than just MdDS but any chronic disorder, disease, permanent injury. To be told that your entire life is going to change is so devastating. Its hard not to fall into a pit of despair and not be able to rise above it all.
"The beauty is, I'm learning how to face my beast, Starting now to find some peace, Set myself free"
To find that peace with the "new" you is so difficult to do, but you get to a point (time line may vary for each person, mine was a few months) that you realize okay, I cannot let my life pass me by. I have to do something to "fix" my world. So I sat with my husband and figured out all of the parts of my life I do have control over and how can I take those parts of my life back. There are still some things that I cannot do, and that is okay (can't look straight up to the sky, can't watch the trees go by in a car, definitely can't watch NASCAR or any other fast movement). But I can crawl up the stairs to tuck my kids into bed on my medium symptom days, I can work even on my 7-8 scale days with the help of my co-workers. I can dance on my low symptoms days (and I be sure to do this even if I'm not in a dance move because I have to prove to myself that everything is going to be okay). I push myself to travel, go on trips, see the world.
"I'm staring through the I don't care, It's staring back at me"
"I don't have to be afraid, I don't have to let the damage, consume me,"
In two weeks I'm heading to Tennessee. Its the first time I'm traveling through mountains since I was diagnosed. Its the first time that I will be dealing with extreme heights above sea level while going back and forth and around various mountains, but I have to do this. I want to live my life with my husband and kids. I want to take trips with them. Our plan is go to a theme park, an aquarium, and maybe even horse back riding. All types of triggers, but I have no fear. I have to trust in myself.
"Fear in itself
Will reel you in
And spit you out over and over again
Believe in yourself
and you will walk
Fear in itself
Will use you up and break you down
like you were never enough
I used to fall but now I get back up
I'm moving on
Oh god just move on
Today,
I don't have to fall apart
I don't have to be afraid....
Get back up
Get up"
Will reel you in
And spit you out over and over again
Believe in yourself
and you will walk
Fear in itself
Will use you up and break you down
like you were never enough
I used to fall but now I get back up
I'm moving on
Oh god just move on
Today,
I don't have to fall apart
I don't have to be afraid....
Get back up
Get up"
Friday, July 24, 2015
"Fight Song"~Rachel Platten
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
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
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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