The confusing part about MdDS is that it doesn't make any sense. None. Its like BAM! here's this syndrome you have that doesn't quite match other sufferers, but somehow you are all linked and now you need to figure out how to cope and live with it with no reasons as to why it happens or how to fix it and make it go away permanently. The symptoms change for each person who suffers, but a predominantly someone suffering from perpetual rocking/swaying motion. There are certain remedies that help certain sufferers such as medications, chiropractic manipulations, vestibular therapies, etc. But what works for one, doesn't work for all.Currently there is no definitely diagnostic study to provide a definite diagnosis of MdDS. There is no cure for MdDS.
It's a battle. A huge battle. A struggle.
One day you are feeling your "new normal", as I like to call it, because well, yes, this is my new normal....it's definitely not my old normal life. The next day you are laid out and can't do much of anything. It can even happen within a day's time, from morning to afternoon.
I've talked before about the scale that symptoms are rated. This scale helps MdDSers explain exactly how they are feeling on a day-to-day basis. It's a way for us to better understand where someone is standing, or in our case rocking/swaying. My scale fluctuates a lot more lately. I've noticed stress makes the symptoms worse, weather pressure symptoms pretty much put me out for the day. Sitting, or laying, and listening to music helps my symptoms calm down, as well as keep up with a good diet and staying hydrated.
I've recently gotten back into exercising again and I have found there are a lot of movements that I am just unable to do anymore. Even on the good days, the motions cause too much stimulation around me to make it safe for me to complete the exercises, so I've learned to modify them to work for me. Burpees are a definite no for me but I can break down the movements with small breaks in between each part and I can do it. I stay away from face-paced movements and stick with the slower motions and this helps. The exercising has been helping with my core strength and balance. But as much as I love exercising, there are days that its just impossible for me to do any of it. However, I'm learning what new things I'm capable of doing and what are some of my new limitations.
Every day is a learning experiment. It's learning what your limitations are for the day and being okay with it. It is knowing when to make a judgment call for not only yourself but those around you and decide if you should stay home or go out in public.
Unfortunately with there being very little information about MdDS out there in the general population, for most of us the choices are taken from us. Others don't understand what you are dealing with, how it feels and how to deal with someone with this syndrome. I can't just pretend like it doesn't exist. I can't make it temporarily go away so I can go into work for a couple of hours or drive to the store or walk around a mall. I can't just "walk normal" or stand still while talking to you. Sometimes it is just not a possibility.
Then again, sometimes I will be doing well that day and I am standing straight. I'm dancing and jumping around the room. I'm running. I'm bending over and standing back up with ease. No I'm not faking my symptoms or exaggerating what is happening with me. I'm just having a better day. I really really like those days.
So yea, MdDS is confusing. Mind-boggling actually. But MdDS is just a part of what I deal with every day. And I'm still coping and moving forward, even if its a crooking motion forward.
Friday, January 15, 2016
Saturday, January 9, 2016
"Eyes Wide Open"~Gotye
I'll first start by saying my vision is horrible. Actually horrible isn't a strong enough adjective to describe it. I've had to wear glasses since I was 6 years old, moved to contacts at the age of 14 for my near-sightedness. At the age of 11 or 12 my optometrist told me that around the age of 30 or so I would need bifocal lenses. He knew this my the degeneration of my eyes and knew that at some point I would be forced to need the additional help. At the age of 25 my eyes were so bad that I wasn't even a candidate for corrective surgery as I would still have to wear contacts/glasses afterward because they wouldn't be able to completely correct the problem. That all being said, I absolutely HATE wearing my glasses. I actually avoid it at all costs, which isn't good for my eyes, but, seriously, HATE wearing the stupid things. Besides when I wear my glasses it throws my MdDS symptoms into high gear. I actually see much better with my contacts.
Ok, so now the point of my post for today. This morning I had my annual eye check. Now mind you I have seen the same lady now for the last two years and never had any problems. In fact, last year she found the perfect brand of contacts for me that made my eyes feel so much better. However, she wasn't in today and there was a fill-in doc. We shall call her Dr. Witch. Now, I haven't had any problems with focusing near or far away this last year. My eyes actually have not been bothering me nearly as much as they have in the past.
Well, Dr. Witch starts her exam and before she has me do anything she checks my eyes and says that it looks like my eyes have been strained. I explain to her that I have been doing more reading on computers recently, haven't been wearing my glasses like I should and I know this doesn't help the strain. She starts having me do the typical read this line, what about that line, which is better one or two, etc. So far I'm good. Then she says okay close your eyes, she flips some switch on the the machine and then tells me to open my eyes. When I do there are two letters, but set as double vision and the letters are extremely blurry. I immediately close my eyes and beg her to turn it off. She explains that she needs to complete this exam to figure out what I need for my prescription. I try again to open my eyes. I shut them. They are moving, shifting, I immediately start rocking. I've never had this happen before and I beg her again to please take it down and I actually start having an anxiety attack. She tells me that she thinks I may need bifocals to help with my vision as I'm having issues focusing from one object to another and to complete the exam she needs to do this part.
I start to explain to her that I have the MdDS issue and that its causing my symptoms to escalate and if she looks in my chart she will see that I have this issue. I open my eyes again but she hasn't taken it down yet, so I end up pushing the machine away. At this point I'm sitting in the chair unable to move cause of the rocking and I feel trapped. I have tears running down my face because I don't know what to do. She then tells me that I'm in denial for needing the bifocals and that if I would use them it would help with the visual aspect of my MdDS. I asked her if she's ever heard of the syndrome. Does she understand what it entails? Has she had patients who have had this and changing their glasses helped them? She tells me that she's never heard of it, but if my vision is messing up the way that I'm stating, then changing my glasses will fix it. I immediately start laughing. I actually got mad at a doctor, which never happens, and took a deep breath to stop the attack. I then tell her "Do not take guesses on my care. If you have never heard of a syndrome how can you assume that your treatment is going to miraculously cure my problem? Lady, no offense but I've been fighting this disorder for 3 1/2 years. I've tried different treatments, and worked with different specialists. I'm not in denial about the bifocal issue as I've known this was part of my future with needing glasses. If the bifocals will help with the strain of my eyes, I will be glad to try it. However, since Mr. Ben Franklin invented the bifocals, I'm sure there is another test you can perform that doesn't involve double vision blurry letters. Thanks."
Unfortunately, I still needed to have my eyes dilated and checked. I just tell her to do what she needs to do so I can leave. Before I go, she explains that they can't trial the bifocal contacts because my eyes are dilated (with dilated eyes, you can't see things close up due to too much light entering the eye). So now I have to go back in a few weeks to try them to see how they work. However, it has now been notated that I won't see her again.
Its frustrating to have the syndrome. Its worse when doctors tell you you are crazy. I don't ask docs anymore for help in regards to it. I'll be glad to explain what it is, but I have a physician who helps me and from there I don't need any other doctor to tell me I'm crazy and that what I'm feeling is not really happening. So sorry mom, I showed my tail in a doc's office and got ugly. Highly doubt it was the first time, probably won't be the last. Hopefully it was though.
Ok, so now the point of my post for today. This morning I had my annual eye check. Now mind you I have seen the same lady now for the last two years and never had any problems. In fact, last year she found the perfect brand of contacts for me that made my eyes feel so much better. However, she wasn't in today and there was a fill-in doc. We shall call her Dr. Witch. Now, I haven't had any problems with focusing near or far away this last year. My eyes actually have not been bothering me nearly as much as they have in the past.
Well, Dr. Witch starts her exam and before she has me do anything she checks my eyes and says that it looks like my eyes have been strained. I explain to her that I have been doing more reading on computers recently, haven't been wearing my glasses like I should and I know this doesn't help the strain. She starts having me do the typical read this line, what about that line, which is better one or two, etc. So far I'm good. Then she says okay close your eyes, she flips some switch on the the machine and then tells me to open my eyes. When I do there are two letters, but set as double vision and the letters are extremely blurry. I immediately close my eyes and beg her to turn it off. She explains that she needs to complete this exam to figure out what I need for my prescription. I try again to open my eyes. I shut them. They are moving, shifting, I immediately start rocking. I've never had this happen before and I beg her again to please take it down and I actually start having an anxiety attack. She tells me that she thinks I may need bifocals to help with my vision as I'm having issues focusing from one object to another and to complete the exam she needs to do this part.
I start to explain to her that I have the MdDS issue and that its causing my symptoms to escalate and if she looks in my chart she will see that I have this issue. I open my eyes again but she hasn't taken it down yet, so I end up pushing the machine away. At this point I'm sitting in the chair unable to move cause of the rocking and I feel trapped. I have tears running down my face because I don't know what to do. She then tells me that I'm in denial for needing the bifocals and that if I would use them it would help with the visual aspect of my MdDS. I asked her if she's ever heard of the syndrome. Does she understand what it entails? Has she had patients who have had this and changing their glasses helped them? She tells me that she's never heard of it, but if my vision is messing up the way that I'm stating, then changing my glasses will fix it. I immediately start laughing. I actually got mad at a doctor, which never happens, and took a deep breath to stop the attack. I then tell her "Do not take guesses on my care. If you have never heard of a syndrome how can you assume that your treatment is going to miraculously cure my problem? Lady, no offense but I've been fighting this disorder for 3 1/2 years. I've tried different treatments, and worked with different specialists. I'm not in denial about the bifocal issue as I've known this was part of my future with needing glasses. If the bifocals will help with the strain of my eyes, I will be glad to try it. However, since Mr. Ben Franklin invented the bifocals, I'm sure there is another test you can perform that doesn't involve double vision blurry letters. Thanks."
Unfortunately, I still needed to have my eyes dilated and checked. I just tell her to do what she needs to do so I can leave. Before I go, she explains that they can't trial the bifocal contacts because my eyes are dilated (with dilated eyes, you can't see things close up due to too much light entering the eye). So now I have to go back in a few weeks to try them to see how they work. However, it has now been notated that I won't see her again.
Its frustrating to have the syndrome. Its worse when doctors tell you you are crazy. I don't ask docs anymore for help in regards to it. I'll be glad to explain what it is, but I have a physician who helps me and from there I don't need any other doctor to tell me I'm crazy and that what I'm feeling is not really happening. So sorry mom, I showed my tail in a doc's office and got ugly. Highly doubt it was the first time, probably won't be the last. Hopefully it was though.
Monday, January 4, 2016
"Shatter Me"~Lindsey Stirling (feat. Lzzy Hale)
In a world of rocking, you feel like you never get a break. Your brain just never shuts down. Its like someone or something is screaming loud and constant. You struggle with so many "easy" daily tasks. Its amazing how we MdDSers don't lose our sanity. And with all of the thoughts running through your brain, you have this stupid brain fog that rolls in and it either slows your thought process down or takes the thoughts away completely and you forget what you were doing, saying, figuring out.
Sometimes I have the little thoughts running loud and the important ones get hidden under the noise. I forget upcoming events, or telling someone an important topic. I tend to interrupt conversations, not that I'm trying to be rude, but if I don't get the idea out it will get lost. I feel like an idiot when I'm in the middle of the conversation, mid sentence and the idea is gone. Just completely disappears. So the other person is just sitting there like "........." Happens all the time! Its so frustrating!
Then for me, I deal with my ears "popping." There are days that my ears have so much pressure and I feel like when people talk to me, they are in a tunnel sometimes. Then my ears will "pop" and it almost sound like someone has snapped their fingers right next to my ear drum. This popping can cause some pain which is not explained. Because of the pressure sometimes I'll talk really loud and not realize it. I'm already a naturally loud person but I definitely get louder and don't realize it until I have someone say to quiet down. If the pressure is too much I tend to be really quiet because the added noise makes my symptoms feel worse.
For me, I can deal with one or two symptoms at a time. I've learned to cope and make adjustments, but you throw numerous symptoms at me at once or they jump up on the scale and its like I just want to shut down. I literally get so tired of fighting and pushing through that the only thing I can do is just crash for the rest of the day.
When I lay down though its like the brain picks up speed and wants you to contemplate everything at once. Its like "Oh we don't have to function the rest of the body right now, so....lets think of the world's problems and how we are to fix all of them." You over think everything. Every decision that you make, every feeling that you feel, it becomes overwhelming.
The point of all of this? I really don't know...haha...no seriously...I have no clue what the point of explaining all of this is because I'm still working on the coping of this particular MdDS problem. I do tend to write more things down. I utilize texting and messaging to send info to friends and family so I can say what I need to right then and there. My phone has become my buddy with its amazing calendar that is backed up to my email so I can't forget appointments, birthdays, etc.
I guess I'll just need to sit here and relax until the fog dissipates and I'll one day get all my thoughts across as I intended originally. One day.....maybe....or maybe I will just eventually go insane and my new best friend will be a padded room....only time will tell.
Sometimes I have the little thoughts running loud and the important ones get hidden under the noise. I forget upcoming events, or telling someone an important topic. I tend to interrupt conversations, not that I'm trying to be rude, but if I don't get the idea out it will get lost. I feel like an idiot when I'm in the middle of the conversation, mid sentence and the idea is gone. Just completely disappears. So the other person is just sitting there like "........." Happens all the time! Its so frustrating!
Then for me, I deal with my ears "popping." There are days that my ears have so much pressure and I feel like when people talk to me, they are in a tunnel sometimes. Then my ears will "pop" and it almost sound like someone has snapped their fingers right next to my ear drum. This popping can cause some pain which is not explained. Because of the pressure sometimes I'll talk really loud and not realize it. I'm already a naturally loud person but I definitely get louder and don't realize it until I have someone say to quiet down. If the pressure is too much I tend to be really quiet because the added noise makes my symptoms feel worse.
For me, I can deal with one or two symptoms at a time. I've learned to cope and make adjustments, but you throw numerous symptoms at me at once or they jump up on the scale and its like I just want to shut down. I literally get so tired of fighting and pushing through that the only thing I can do is just crash for the rest of the day.
When I lay down though its like the brain picks up speed and wants you to contemplate everything at once. Its like "Oh we don't have to function the rest of the body right now, so....lets think of the world's problems and how we are to fix all of them." You over think everything. Every decision that you make, every feeling that you feel, it becomes overwhelming.
The point of all of this? I really don't know...haha...no seriously...I have no clue what the point of explaining all of this is because I'm still working on the coping of this particular MdDS problem. I do tend to write more things down. I utilize texting and messaging to send info to friends and family so I can say what I need to right then and there. My phone has become my buddy with its amazing calendar that is backed up to my email so I can't forget appointments, birthdays, etc.
I guess I'll just need to sit here and relax until the fog dissipates and I'll one day get all my thoughts across as I intended originally. One day.....maybe....or maybe I will just eventually go insane and my new best friend will be a padded room....only time will tell.
Monday, December 28, 2015
"Night Train"~Jason Aldean
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.
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.
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"
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