Today is day 4 of no symptoms. Its been such an amazing feeling, strange but oh so wonderful. Since my last post, I've had a lot people contact me with well wishes which I appreciate, but also they have sent a ton of questions. I've compiled the most frequent so here goes:
1. Did I use any medications? Sort of. I only used Meclizine to help with my nausea and Valium some nights to help me relax to be able to sleep. In the beginning I did try various medications, however none helped. A lot of the "suggested" meds that help some people would not work for me because I have adverse reactions to them. I very rarely use any of my meds unless I absolutely had to.
2. Who helped diagnose me? The first person was my ENT specialist. This guy had performed surgeries on my children and he also worked side-by-side with the doctors I work for so I trusted his opinion. The second was a neurologist who pretty much stated the same as the ENT.
3. How long have I suffered from MdDS? Two years as of May 28th. Two hard long years. The first year was very tough, but I started to push myself harder and within the last year I started to have more good than bad days.
4. What did I do to lose my symptoms? This question is very hard to answer. The problem is I really don't know if it was one thing or another that I did. I literally woke from a nap and the rocking was gone and has stayed gone now for a few days. I did try vestibular rehab and I continued to work on the exercises I learned. I walked a lot, even if I didn't want to. I basically did different things to try and trick my brain into thinking I was doing something different. I found coping mechanisms like listening to music when I felt anxiety. I practiced over and over again to read again because books always helped me leave the world I am in and jump into another place & time. I pushed myself on my good days, and laid low on my bad days. Most importantly, I stayed positive. When I couldn't stay positive I had an amazing husband, mom, and family who helped me stay positive. I got to a point that I had to laugh at myself. (I'm not saying this disorder is a joking matter, but I have to find humor or I'll lose it).
5. Do you think you are in remission? I have no idea. I hope that I am. I hope this is the end of this ordeal. But I am cherishing every day that I am given symptom free. I know what to expect if it comes back and I know what I need to do to handle the emotions that come with it.
6. What is your current playlist now that you are "rockin" out and having fun? I LOVED THIS QUESTION! Right now its a total mix of different music. A little country, some hip hop, lots of rock and pop. Music that I can blare and dance around to. I can't write all of them but here are few:
"Shatter Me"~Lindsey Stirling feat Lzzy Hale, "Play It Again"~Luke Bryan, "This is How We Roll"~Florida Georgia Line, "Look After You"~The Fray, "Alright"~Darius Rucker, "The Walker"~Fitz & The Tantrums, "Can't Hold Us"~Macklemore & Ryan Lewis, "Don't Stop Me Now"~Queen, "This Close"~Flyleaf, "Love Bites [So Do I]"~Halestorm, "Whistle"~Flo Rida, "Talk Dirty"~Jason Derulo and so many more.
I think I got most of the questions, I hope all my fellow MdDSers get a chance to feel what I have felt these last few days. I'm grateful for what I've gotten to experience and I hope it stays this way.
Thank you for all the support. I will continue to write about my experiences and how things will continue day-to-day.
~Sara
Monday, May 12, 2014
Friday, May 9, 2014
"I'm on Top of the World"~Imagine Dragons
MY VERY FIRST DAY COMPLETELY 100% SYMPTOM FREE!!!!!
****hands thrown up in the air and screaming to the world****
Wow! So last night I had another night of not being able to sleep. I finally fell asleep at 5:30 this morning and then had to wake back up at 7 to take the hubby to work. Got home and got the kiddos ready for school and sent them on their way and then I crashed on the couch. I slept until 1. I went to stand up from the couch, preparing myself to fall back down since this is the norm for me after taking naps during the day.
I stand up and I feel nothing! Absolutely nothing! I walked around and it was the strangest feeling in the world to not rock. I decided to jump in the shower (usually a good trigger for me), but again nothing! I was able to stay in longer than I usually do and still nothing! I got dressed and moved all around my house with no symptoms. I was home alone and I felt like running out of my house screaming how good I felt. Instead, I had my own little dance party in my house. I blared good music and busted a move and I felt amazing! Wait...amazing doesn't even come close to how I feel.
I picked up my kids from school, came home, and started playing with my kids. I rolled all over the floor with them singing songs, dancing to music with them and tickling them. Went to pick up the hubby from work and here I sit. 7pm and still no symptoms. This is incredible!
It is so strange not to be rocking all over the place. To be able to walk around and feel like a normal person! Going on 2 years with MdDS and here I am throwing my own little party.
I pray it stays, but guarded and prepared that it will all come back. I'm not getting my hopes up but I am totally going to keep partying it up tonight with my kids & hubby. I'm going to celebrate this amazing day. I'm totally on top of the world!
****hands thrown up in the air and screaming to the world****
Wow! So last night I had another night of not being able to sleep. I finally fell asleep at 5:30 this morning and then had to wake back up at 7 to take the hubby to work. Got home and got the kiddos ready for school and sent them on their way and then I crashed on the couch. I slept until 1. I went to stand up from the couch, preparing myself to fall back down since this is the norm for me after taking naps during the day.
I stand up and I feel nothing! Absolutely nothing! I walked around and it was the strangest feeling in the world to not rock. I decided to jump in the shower (usually a good trigger for me), but again nothing! I was able to stay in longer than I usually do and still nothing! I got dressed and moved all around my house with no symptoms. I was home alone and I felt like running out of my house screaming how good I felt. Instead, I had my own little dance party in my house. I blared good music and busted a move and I felt amazing! Wait...amazing doesn't even come close to how I feel.
I picked up my kids from school, came home, and started playing with my kids. I rolled all over the floor with them singing songs, dancing to music with them and tickling them. Went to pick up the hubby from work and here I sit. 7pm and still no symptoms. This is incredible!
It is so strange not to be rocking all over the place. To be able to walk around and feel like a normal person! Going on 2 years with MdDS and here I am throwing my own little party.
I pray it stays, but guarded and prepared that it will all come back. I'm not getting my hopes up but I am totally going to keep partying it up tonight with my kids & hubby. I'm going to celebrate this amazing day. I'm totally on top of the world!
Monday, April 14, 2014
"Safe and Sound"~Captial Cities
I've come to realize that keeping up with day-to-day life and a blog has become a lot harder for me, but I'm trying to make the effort.
I wouldn't say I've hit a remission because I have not gone an entire week without symptoms, but I'm doing much better than I was this time last year. I'm trying very hard to stay positive with it all. Today was my first day that I went with pretty much ZERO symptoms! It was such an odd feeling to feel my old self. It was amazing, but there was a small part of me just waiting to be prepared for a wave to come through. I would have a balance issue here and there, but for the most part there was no rocking or swaying or bobbing. No pain in my ears, no pressure in my head. I have felt so good today and yesterday.
The last few weeks have been extremely stressful personally. We have had a lot going on with family issues that we have had to work through, but at this point, everything is out of our hands. I try to stay positive. When my view starts to turn negative, I start jamming out to music. Music has been my comfort for as long as I can remember, but lately it has been my go-to. I've jumped from up-beat pop, to rock, to hip-hop and even country. I've mixed up my playlist and its been awesome to find new music and old favorites.
I've decided that I am going to try to find some outdoor venues that are having free concerts in the area to go hear some bands live. I made it to a few last year and it was awesome.
Everyday, I'm pushing harder to become better. I have my set backs and I've learn to accept those. I know how hard I can push myself and when I need to just be okay with the way things are. Its all I can do. I have learned that this is the way things are and this is the way I am.
I'm feeling better about myself. Don't get me wrong, I still have my frustrating days, but who doesn't? And mine just come with a little wave riding. I just need to get back on my surfboard and ride along whichever way the waves take me!
I wouldn't say I've hit a remission because I have not gone an entire week without symptoms, but I'm doing much better than I was this time last year. I'm trying very hard to stay positive with it all. Today was my first day that I went with pretty much ZERO symptoms! It was such an odd feeling to feel my old self. It was amazing, but there was a small part of me just waiting to be prepared for a wave to come through. I would have a balance issue here and there, but for the most part there was no rocking or swaying or bobbing. No pain in my ears, no pressure in my head. I have felt so good today and yesterday.
The last few weeks have been extremely stressful personally. We have had a lot going on with family issues that we have had to work through, but at this point, everything is out of our hands. I try to stay positive. When my view starts to turn negative, I start jamming out to music. Music has been my comfort for as long as I can remember, but lately it has been my go-to. I've jumped from up-beat pop, to rock, to hip-hop and even country. I've mixed up my playlist and its been awesome to find new music and old favorites.
I've decided that I am going to try to find some outdoor venues that are having free concerts in the area to go hear some bands live. I made it to a few last year and it was awesome.
Everyday, I'm pushing harder to become better. I have my set backs and I've learn to accept those. I know how hard I can push myself and when I need to just be okay with the way things are. Its all I can do. I have learned that this is the way things are and this is the way I am.
I'm feeling better about myself. Don't get me wrong, I still have my frustrating days, but who doesn't? And mine just come with a little wave riding. I just need to get back on my surfboard and ride along whichever way the waves take me!
Wednesday, March 19, 2014
"Human"~Christina Perri
I started writing this a little while ago, and never published it....so I added a little to it, and here it is:
"I can do it, I can do it, I'll get through it, But I'm only human, And I bleed when I fall down, I'm only human, And I crash and I break down"
Its been a road of ups and downs since the last I wrote. I have great weeks, then bad ones. The thing about having MdDS is that you get your hopes up on the good days and feel like someone has literally shoved you down on the bad. Its been an inner struggle for me not to get frustrated about it all.
On top of dealing with the day-to-day rocking, you have the rest of your life you have to leave. It doesn't stop when the MdDS acts up. For me, I'm a wife, a mother, a sister, daughter, co-worker, Girl Scout leader, a friend, the list goes on and on. I hate when I feel like I'm failing in any of the above mentioned areas. I do the best I can and push as hard as I can, but sometimes I still cannot do what I feel needs to be done. I've talked about my great support system before, and its true how wonderful the people around me are. I'm lucky to have the people around me to help, but sometimes you just want the old you back to be able to do it all like before.
I have remind myself all the time that I am only human, that I'm only one person and I have this impending cloud that can strike me down at any moment. I stay positive and I push forward, but sometimes you just get tired of pushing.
For me I struggle with this on a daily basis. I can ignore some of the symptoms when they aren't too bad. I can pretend that my ears and head aren't hurting, that the world is not moving so much. Then there are the days that you can't ignore it and you have to deal with that pain, the pressure, the feeling of being a failure. I breakdown on my own mostly nowadays. I try not to drag down those around me.
And the stress of day-to-day life makes the symptoms so much worse. Its like this repetitive circle that is never ending and trying to get out of that loop is sometimes the biggest battle, the highest hurdle, the steepest mountain to climb.
I'm heading into my second year anniversary (come May) with having MdDS. I've learned so much about myself that I didn't know before. Some people may have seen in me all along, but I never saw it. This disorder has given me a strength that I didn't believe existed inside of myself. But again, I'm human and I don't feel even this new found strength everyday. I want to feel proud of myself again. I need to find more faith in myself that I can conquer everything that is put in front of me.
I am proud of who I've become over the years. I am happy with what God has given me. My family is strong, my friends are supportive, my bosses are understanding. My life (minus this MdDS crap) is fulfilling. I guess, no matter how tired I am, I need to keep pushing forward and hope that I will eventually break through the tough days.
"I can do it, I can do it, I'll get through it, But I'm only human, And I bleed when I fall down, I'm only human, And I crash and I break down"
Its been a road of ups and downs since the last I wrote. I have great weeks, then bad ones. The thing about having MdDS is that you get your hopes up on the good days and feel like someone has literally shoved you down on the bad. Its been an inner struggle for me not to get frustrated about it all.
On top of dealing with the day-to-day rocking, you have the rest of your life you have to leave. It doesn't stop when the MdDS acts up. For me, I'm a wife, a mother, a sister, daughter, co-worker, Girl Scout leader, a friend, the list goes on and on. I hate when I feel like I'm failing in any of the above mentioned areas. I do the best I can and push as hard as I can, but sometimes I still cannot do what I feel needs to be done. I've talked about my great support system before, and its true how wonderful the people around me are. I'm lucky to have the people around me to help, but sometimes you just want the old you back to be able to do it all like before.
I have remind myself all the time that I am only human, that I'm only one person and I have this impending cloud that can strike me down at any moment. I stay positive and I push forward, but sometimes you just get tired of pushing.
For me I struggle with this on a daily basis. I can ignore some of the symptoms when they aren't too bad. I can pretend that my ears and head aren't hurting, that the world is not moving so much. Then there are the days that you can't ignore it and you have to deal with that pain, the pressure, the feeling of being a failure. I breakdown on my own mostly nowadays. I try not to drag down those around me.
And the stress of day-to-day life makes the symptoms so much worse. Its like this repetitive circle that is never ending and trying to get out of that loop is sometimes the biggest battle, the highest hurdle, the steepest mountain to climb.
I'm heading into my second year anniversary (come May) with having MdDS. I've learned so much about myself that I didn't know before. Some people may have seen in me all along, but I never saw it. This disorder has given me a strength that I didn't believe existed inside of myself. But again, I'm human and I don't feel even this new found strength everyday. I want to feel proud of myself again. I need to find more faith in myself that I can conquer everything that is put in front of me.
I am proud of who I've become over the years. I am happy with what God has given me. My family is strong, my friends are supportive, my bosses are understanding. My life (minus this MdDS crap) is fulfilling. I guess, no matter how tired I am, I need to keep pushing forward and hope that I will eventually break through the tough days.
Tuesday, December 31, 2013
"Cannonball"~Lea Michele
The end of 2013 ends and a new year begins. One last post of 2013.
I chose this song because I heard her sing it for the first time on Ellen and thought that this is how I have felt all year. It is kinda my anthem for the year. It is how I have fought and pushed my way through this year to accomplish so much.
I started this year out still feeling down about my MdDS, but I pushed myself as much as I could. I started off the year on such a low note after last year's holidays. I was worried that my goals I set for myself were too high. But if anything I have learned in this last year, I'm stronger than I ever thought I was able to be.
I accomplished so much, and I'm so proud of myself for doing so. I was able to travel more. I was able to see the last of my dearest friends commit her love for her husband in March. I was able to get to my grandparents' house in South Carolina and got to also see my dad while I was there. I made it to Nags Head this year and even ended up walking into the ocean for a little bit. I started driving again after not being able to drive for a year. I started working, part-time, but I'm working. I'm working more with computers and pacing myself with projects at work and home. I went to a few concerts, a broadway show of "American Idiot." I also tried to ride a roller coaster (not doing that for awhile) and also went to a water park for the girl scouts.
I took over my girl scout troop this year as leader. I now have 16 girls under my guidance with the help of a wonderful co-leader. In doing this, I have been able to plan small trips with them including going to a pumpkin patch, fire station and camping (my first time ever).
I still have had some rough days, but they come farther apart than what they used to do. Like my husband says, this time last year I was begging for good days, now I have way more good days than bad. I've worked on how I cope with the stress of it all. I've learned that I'm not superwoman and I can only work on one day at a time.
So here comes 2014. My number one goal for this year is to keep moving forward. Keep trying new ways to overcome my obstacles that I have and keep going. Josh and I are coming up on our 10 year anniversary. It will be 10 years since I joined my sorority. It will be 9 years since I had my son, 6 since I had my daughter. 6 years since we bought our home.
I say good bye to one more year and hello to a new one.
"I've got this new beginning and I'll fly, I'll fly, I'll fly, like a cannonball"
Happy New Year to all!~Sara
I chose this song because I heard her sing it for the first time on Ellen and thought that this is how I have felt all year. It is kinda my anthem for the year. It is how I have fought and pushed my way through this year to accomplish so much.
I started this year out still feeling down about my MdDS, but I pushed myself as much as I could. I started off the year on such a low note after last year's holidays. I was worried that my goals I set for myself were too high. But if anything I have learned in this last year, I'm stronger than I ever thought I was able to be.
I accomplished so much, and I'm so proud of myself for doing so. I was able to travel more. I was able to see the last of my dearest friends commit her love for her husband in March. I was able to get to my grandparents' house in South Carolina and got to also see my dad while I was there. I made it to Nags Head this year and even ended up walking into the ocean for a little bit. I started driving again after not being able to drive for a year. I started working, part-time, but I'm working. I'm working more with computers and pacing myself with projects at work and home. I went to a few concerts, a broadway show of "American Idiot." I also tried to ride a roller coaster (not doing that for awhile) and also went to a water park for the girl scouts.
I took over my girl scout troop this year as leader. I now have 16 girls under my guidance with the help of a wonderful co-leader. In doing this, I have been able to plan small trips with them including going to a pumpkin patch, fire station and camping (my first time ever).
I still have had some rough days, but they come farther apart than what they used to do. Like my husband says, this time last year I was begging for good days, now I have way more good days than bad. I've worked on how I cope with the stress of it all. I've learned that I'm not superwoman and I can only work on one day at a time.
So here comes 2014. My number one goal for this year is to keep moving forward. Keep trying new ways to overcome my obstacles that I have and keep going. Josh and I are coming up on our 10 year anniversary. It will be 10 years since I joined my sorority. It will be 9 years since I had my son, 6 since I had my daughter. 6 years since we bought our home.
I say good bye to one more year and hello to a new one.
"I've got this new beginning and I'll fly, I'll fly, I'll fly, like a cannonball"
Happy New Year to all!~Sara
Tuesday, November 26, 2013
"Mango Tree"~Angus & Julia Stone
I apologize ahead of time if this post is so scattered, but I decided to write on a day where I feel my worst as far as the way my brain is working.
First off, I've come to the conclusion that I have a love/hate relationship with Virginia weather. Sunny days are good, unless there has been a bad pressure system running through. Rain hurts. Cold drives me bonkers. I've always been known as a summer baby. My momma made me for summer weather. I used to love rain storms that come through, but even the smallest sprinkle of rain is killing me. Since I was diagnosed, I've had a pressure sensation in my ears, but here lately I'm experiencing sharp pain, especially with the cold. It feels like someone is jabbing me with an ice pick in my ears. Not only do these systems cause the pain, but the pain makes the rocking worse. I'm so distracted with the cold and pain that I can't concentrate on walking straight or being able to focus on easy tasks. It is driving me nuts! I have learned to deal with the pressure but I can't handle the pain. Its almost debilitating, and I can't stand that either.
Today is my sororities Centennial Founder's Day celebration. I joined Phi Sigma Sigma almost 10 years ago. The best decision I ever made. Through my big sister and a mutual friend I met the love of my life. My sisters are still a big part of my life today. I'm so happy that I have them there in my life. I proud of our 10 founding sisters who basically said that it doesn't matter your economic, social, or religious background, you can join our sorority. We instill this concept today with acceptance and love for those who want to join. Diokete Hupsula!
Thanksgiving is coming up in two days. There is so much that I'm thankful for in my life. This last year I've realized that I have so much that I am appreciative of. My husband, kids, mom, sister & brother, extended family and friends. A home, food on my table, my kids have what they need, my marriage has what it needs. So much has happened over the last few years within my family that I am so grateful to have each person with me.
I've pushed harder this last week to do more day to day. I'm trying to focus even more at work. I'm trying to be more involved with my kids. I try to spend more attention to my husband. I'm driving more. I have my good days and bad, but I still push. I may come home and collapse from exhaustion, but I'm accomplishing more for myself. I'm slowly getting my independence back.
I've found new music to listen to which is awesome! I love finding new artists that I hadn't heard of, but even popular artists with new songs. It was actually tough for me to find a song to title my blog with today. I looked back at my blog and found that its been awhile since I've done the playlist of what I've found recently. Its pretty cool when certain songs help me to relax when my body won't, or finding a song that has a good beat that helps me walk to it. I've always been one to search and hunt for new music. I listen to anything at least once, but it all depends on the mood. So lately its been a jump between dance mixes & pop to more mellow songs like the one above. I found this artist through the soundtrack for "Breaking Dawn." As much as I liked the song "Love Will Find You" I love their other songs that they have too.
Random thought: Sneezing with MdDS is the pits! Let me just tell you! Next time you have to sneeze try rocking back and forth while you do it without falling over or slamming your head into a wall! Jeez. Again the weather changing back in forth has had me sneezing more often and it sucks!
Ok, random thought over.
I'm going to try to make a valiant effort to update my blog more often. I know I was slacking off for a while there. It was more so because of starting the new job, getting Girl Scouts started, kids in school, adjusting to my new day-to-day schedule with all of that plus balancing family time and fighting my bad days. My bad days tend to put me in bed for days at a time. BUT! Looking back at this time last year is a big difference. This time last year I was having more bad than good days. I was stressing over holidays because I wasn't sure how I would handle my entire family in a small space, but this year I'm not so stressed. I know what I have to do. I need to take breaks, sit when I need to, stand when I need to, and try not to stress out over the little things. If it doesn't get done, oh well.
So I think that's the end of my purging of the brain for today. Until next time.
First off, I've come to the conclusion that I have a love/hate relationship with Virginia weather. Sunny days are good, unless there has been a bad pressure system running through. Rain hurts. Cold drives me bonkers. I've always been known as a summer baby. My momma made me for summer weather. I used to love rain storms that come through, but even the smallest sprinkle of rain is killing me. Since I was diagnosed, I've had a pressure sensation in my ears, but here lately I'm experiencing sharp pain, especially with the cold. It feels like someone is jabbing me with an ice pick in my ears. Not only do these systems cause the pain, but the pain makes the rocking worse. I'm so distracted with the cold and pain that I can't concentrate on walking straight or being able to focus on easy tasks. It is driving me nuts! I have learned to deal with the pressure but I can't handle the pain. Its almost debilitating, and I can't stand that either.
Today is my sororities Centennial Founder's Day celebration. I joined Phi Sigma Sigma almost 10 years ago. The best decision I ever made. Through my big sister and a mutual friend I met the love of my life. My sisters are still a big part of my life today. I'm so happy that I have them there in my life. I proud of our 10 founding sisters who basically said that it doesn't matter your economic, social, or religious background, you can join our sorority. We instill this concept today with acceptance and love for those who want to join. Diokete Hupsula!
Thanksgiving is coming up in two days. There is so much that I'm thankful for in my life. This last year I've realized that I have so much that I am appreciative of. My husband, kids, mom, sister & brother, extended family and friends. A home, food on my table, my kids have what they need, my marriage has what it needs. So much has happened over the last few years within my family that I am so grateful to have each person with me.
I've pushed harder this last week to do more day to day. I'm trying to focus even more at work. I'm trying to be more involved with my kids. I try to spend more attention to my husband. I'm driving more. I have my good days and bad, but I still push. I may come home and collapse from exhaustion, but I'm accomplishing more for myself. I'm slowly getting my independence back.
I've found new music to listen to which is awesome! I love finding new artists that I hadn't heard of, but even popular artists with new songs. It was actually tough for me to find a song to title my blog with today. I looked back at my blog and found that its been awhile since I've done the playlist of what I've found recently. Its pretty cool when certain songs help me to relax when my body won't, or finding a song that has a good beat that helps me walk to it. I've always been one to search and hunt for new music. I listen to anything at least once, but it all depends on the mood. So lately its been a jump between dance mixes & pop to more mellow songs like the one above. I found this artist through the soundtrack for "Breaking Dawn." As much as I liked the song "Love Will Find You" I love their other songs that they have too.
Random thought: Sneezing with MdDS is the pits! Let me just tell you! Next time you have to sneeze try rocking back and forth while you do it without falling over or slamming your head into a wall! Jeez. Again the weather changing back in forth has had me sneezing more often and it sucks!
Ok, random thought over.
I'm going to try to make a valiant effort to update my blog more often. I know I was slacking off for a while there. It was more so because of starting the new job, getting Girl Scouts started, kids in school, adjusting to my new day-to-day schedule with all of that plus balancing family time and fighting my bad days. My bad days tend to put me in bed for days at a time. BUT! Looking back at this time last year is a big difference. This time last year I was having more bad than good days. I was stressing over holidays because I wasn't sure how I would handle my entire family in a small space, but this year I'm not so stressed. I know what I have to do. I need to take breaks, sit when I need to, stand when I need to, and try not to stress out over the little things. If it doesn't get done, oh well.
So I think that's the end of my purging of the brain for today. Until next time.
Thursday, November 21, 2013
"Behind The Scenes"~Francesca Battistelli
If you know me, you know I'm a positive person. I'm happy the majority of the time. I hate to cry. I hate to get angry. Life is too short to be miserable. I love to goof off, laugh, dance like no one is watching. I like to make people laugh. I take life as it comes and keep going. I don't mind embarrassing myself. My outer shell is someone completely different than what is fully inside. I don't show my struggles very often. I'm an emotional person but only to those really close to me. I have a good front. I'm good at faking it all when I have to.
Everyday I'm making strides to fight this MdDS stuff. It feels good to talk to people about it. Spread the issue and what it involves. Teaching those who have never heard of it and what it does to a person and their life.
I struggle on a daily basis to at least appear "normal." "Normal" in the sense that I don't want to look crazy walking. I don't want to be confused with normal tasks. I don't want to be frustrated, upset, or even lose my hope when it comes to living my new life. People ask me all the time "How do you cope?" "How do you stay positive?" "How do you live?" The answers are simple. I have faith. I have hope. I have an inner strength that I never knew I had and I can share that new found strength with those around me. I have days that I don't cope. I have days that I'm not positive. I have days where I feel I'm not living like I want. BUT I've always been a fighter. I come from women who were/are fighters. I struggle on a daily basis. I fight on a daily basis. But this is my life.
I have had many struggles that I have had to deal with in life and with those I always had a happy smile on my face. I had to, mainly to protect myself, my family. I stay in a good mood around everyone. I don't show my struggles to most people. I am a great actor to pretend that everything is fine. So even when I look like I'm positive, I'm not. Those closest to me can see the difference. They know when they are looking at a facade. They can look deeper and see that I hurt. The old me is no longer and I've had to learn how to live with the new me. The new me that struggles to find hope, strength, courage to keep moving forward.
So what goes on behind the scenes? Every morning I wake up and look around to see what is moving. I tell myself, today is another day that I must fight. I get up, get dressed (sometimes this will take awhile), get my kids ready and start my day in the outside world. I have to watch my steps literally. Is the ground flat today or is it warped? The wall is standing straight up and has been in the same place since the building was built. Remember to turn the faucet more to the cold setting just to make sure you don't burn your hands with hot water. Check and double check where a cup is compared to the drink I'm pouring. Hold onto an object until you are certain it is on a desk or shelf. That person is sitting in front of you, they aren't moving. I feel a hand on my back from Josh or Jake or mom, that means I'm rocking too much and need to focus on stopping. There are kids in this room that are moving fast which means I need to move slower so that I don't trip and fall and hurt someone. Watch for the corners, they cause major bruises on your shoulders so don't hit it. My hands run down walls or reach out for corners so that I don't hit something I'm not supposed too. There's tile in this room, don't look at it...so what can I focus on then? These are just a few things that I have to deal with on a daily basis. This isn't everything. It doesn't even tip the iceberg and its a huge iceberg.
So why put on a front? I hate pity. I hate someone being sorry for me. I don't tell people my story for that reason. I tell them so they learn what it is. More awareness is a good thing, right? I refuse to feel sorry for myself, so why should you feel that way for me? I know its a way for people to show they care, and not to be offensive, but it drives me bonkers! I don't want to feel bad, so I try not to. That saying "it takes more muscles to frown than to smile," well I'm using too many brain muscles with everything else to sit there and get upset and be that way everyday. Its too exhausting. I've also found the more positive I am, the better I feel. I'll keep my behind the scenes moments for me and enjoy the other parts of my life with those around me. I don't have time to dwell on the misery of it all. It took me a really long time to come to this point. I'm terrified everyday that I will wake up and be back to square one, but at the same time have hope that I will wake one morning and it will all be gone.
Although I fight everyday to walk normal, focus on minor details, remind myself that the world isn't moving the way my brain thinks that it is, I don't make it my priority. There are more important things in my life than letting this take me over. I won't go back to day one because day one was scary. I won't go back to week 1, because the frustration was taking over. I won't go back to month 1 because I let the disorder take over who I was. I won't go back to year 1 because that day I lost my hope. I will live for today. For my life and the strides that I have made. I will keep putting on my happy face, because again, its easier for me. "When it’s hard to find hope in the unseen, I have peace in knowing it will find me"
Everyday I'm making strides to fight this MdDS stuff. It feels good to talk to people about it. Spread the issue and what it involves. Teaching those who have never heard of it and what it does to a person and their life.
I struggle on a daily basis to at least appear "normal." "Normal" in the sense that I don't want to look crazy walking. I don't want to be confused with normal tasks. I don't want to be frustrated, upset, or even lose my hope when it comes to living my new life. People ask me all the time "How do you cope?" "How do you stay positive?" "How do you live?" The answers are simple. I have faith. I have hope. I have an inner strength that I never knew I had and I can share that new found strength with those around me. I have days that I don't cope. I have days that I'm not positive. I have days where I feel I'm not living like I want. BUT I've always been a fighter. I come from women who were/are fighters. I struggle on a daily basis. I fight on a daily basis. But this is my life.
I have had many struggles that I have had to deal with in life and with those I always had a happy smile on my face. I had to, mainly to protect myself, my family. I stay in a good mood around everyone. I don't show my struggles to most people. I am a great actor to pretend that everything is fine. So even when I look like I'm positive, I'm not. Those closest to me can see the difference. They know when they are looking at a facade. They can look deeper and see that I hurt. The old me is no longer and I've had to learn how to live with the new me. The new me that struggles to find hope, strength, courage to keep moving forward.
So what goes on behind the scenes? Every morning I wake up and look around to see what is moving. I tell myself, today is another day that I must fight. I get up, get dressed (sometimes this will take awhile), get my kids ready and start my day in the outside world. I have to watch my steps literally. Is the ground flat today or is it warped? The wall is standing straight up and has been in the same place since the building was built. Remember to turn the faucet more to the cold setting just to make sure you don't burn your hands with hot water. Check and double check where a cup is compared to the drink I'm pouring. Hold onto an object until you are certain it is on a desk or shelf. That person is sitting in front of you, they aren't moving. I feel a hand on my back from Josh or Jake or mom, that means I'm rocking too much and need to focus on stopping. There are kids in this room that are moving fast which means I need to move slower so that I don't trip and fall and hurt someone. Watch for the corners, they cause major bruises on your shoulders so don't hit it. My hands run down walls or reach out for corners so that I don't hit something I'm not supposed too. There's tile in this room, don't look at it...so what can I focus on then? These are just a few things that I have to deal with on a daily basis. This isn't everything. It doesn't even tip the iceberg and its a huge iceberg.
So why put on a front? I hate pity. I hate someone being sorry for me. I don't tell people my story for that reason. I tell them so they learn what it is. More awareness is a good thing, right? I refuse to feel sorry for myself, so why should you feel that way for me? I know its a way for people to show they care, and not to be offensive, but it drives me bonkers! I don't want to feel bad, so I try not to. That saying "it takes more muscles to frown than to smile," well I'm using too many brain muscles with everything else to sit there and get upset and be that way everyday. Its too exhausting. I've also found the more positive I am, the better I feel. I'll keep my behind the scenes moments for me and enjoy the other parts of my life with those around me. I don't have time to dwell on the misery of it all. It took me a really long time to come to this point. I'm terrified everyday that I will wake up and be back to square one, but at the same time have hope that I will wake one morning and it will all be gone.
Although I fight everyday to walk normal, focus on minor details, remind myself that the world isn't moving the way my brain thinks that it is, I don't make it my priority. There are more important things in my life than letting this take me over. I won't go back to day one because day one was scary. I won't go back to week 1, because the frustration was taking over. I won't go back to month 1 because I let the disorder take over who I was. I won't go back to year 1 because that day I lost my hope. I will live for today. For my life and the strides that I have made. I will keep putting on my happy face, because again, its easier for me. "When it’s hard to find hope in the unseen, I have peace in knowing it will find me"
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