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.
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