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Vertigo

Is Vertigo caused by a lesion on the brain? Or is this something that everyone with MS has to deal with for some other reason?Does it matter which way you feel like you are spinning? And to be fair, the world is spinning. Not me. 

Do the doctors ask this question to see if you are making it up? If you can’t tell them in which direction you are spinning then you must be lying. 

Or does it mean something if the world is spinning left, or right , or if you feel like you are rocking back and forth?

I have experienced all 3 of those. But at this very minute the world is spinning left like I’m in a tilt a whirl. 

Well it turns out that YES. Yes indeed Vertigo is caused by lesions. Specifically lesions in the complex pathways that coordinate visual, spatial and other input to the brain needed to produce and maintain equilibrium.

Good times people.

After doing some research on this it seems that it doesn’t matter which direction you are spinning, but that you are in fact spinning in a direction. 

http://www.susqneuro.com/publications/dizzy/

This site has a great explanation. They refer knowing you have Vertigo to being like knowing you are in love. There is no question. You can commit to it. 

Yes.

I am definitely spinning left.

Because otherwise there could be different reasons why you feel dizzy that are not Vertigo. And you want to make sure that you are being treated for the correct ailment.

So there you have it people. Commit to a direction and take your motion sickness pills. 

*not me though. I’m going to sit here on the couch and pretend I just got off an awesome rollercoaster. Wweeeeeee!!!!!!!

 
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Posted by on January 24, 2017 in Life with MS

 

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Invisible symptoms 

With MS there are a lot of possible symptoms. Diagnosis is difficult because some of them are so impossible for people to see. Our invisible symptoms. One of these is commonly referred to as Brain Fog. 

Brain Fog is not just Fog. 

I feel like I am loosing my mind. The world is spinning around me at 100 miles an hour and I am standing still. Except I feel like i just ran around in circles and I can’t catch my breath. 

This is the world that I am living in right now. 

Forgetting things, like people’s names and the day of the week are becoming common place. Sometimes I forget where I am, how I got there, and am terrified to move ahead further. And I’m a block from home! 

On a bad day I am constantly fearful that I have forgotten something huge. Like my kids at school. Thank goodness I haven’t actually done this yet, but I fear it anyway. Feels like I shouldn’t be left alone sometimes. Unfortunately it is at those times that all I want is to be left alone. 

I read a book called “Moo!” once. Horrible book. In it the characters were putting on a play called “Stop the world. I want to get off.”. This is how I feel. I want to push a giant pause button. I want to curl up on my couch with a cup of coffee and stare at my Christmas Tree for an entire day! No responsibilities, no one expecting anything of me, no one judging me. I promise I’ll be better after that day! 

However, I don’t want to miss anything. I still want to throw these awesome events in town and at school. My kids and my town mean the world to me. And by “my kids” I don’t mean just the ones that I made. I mean the ones that call me Ms. Janet or Noah’s mom or Tyler’s mom. The ones that think I am just So Cool because I let them dress up like pirates at the book fair. The ones that I ran around in the woods with taking video of for a social studies project. I love these kids. 

So when people say to me, Janet you need to slow down, I ignore them. I know that they are right. But I feel a strong obligation to make sure that these kids have an amazing childhood with amazing memories. I want them to see magic in the world! 

Yes, I know I sound crazy. But these are my thoughts.

So please, Stop the World!

Just for a day. 

Just so I can catch my breath.

Just so that I can keep trying to create magic. 🙂

(This is my Brain Fog.)

 
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Posted by on December 3, 2016 in Life with MS

 

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Who needs sleep?

I remember a very brief time in college that I was very depressed. It was horrible and lonely and there was absolutely no excuse for it. I have always had a wonderful, charmed life. Yet there it was. Favorably is not exactly how I looked back at that time. I have a tendency to joke about it. I was at my thinnest back then. Who doesn’t want that? I wasn’t eating & I went for 7 mile walks every day. Healthy, I know. The walks were my happy place. On the boardwalk in LongBranch. The beach can do wonderful things to ones psyche. And when you have sleep ready to enfold you in it’s velvetty darkness, who needs food?

These days, however, it’s a different story. I am finding myself looking back at that time with a tinge of jealousy. That was when I had the best sleep of my life. 

I could sleep at any time of day. I never had a problem sleeping through the night. I could have easily slept through an entire day. Hell, I could have slept through an entire week! 

Then, there is now.

Now I can’t sleep through the night 2 nights in a row. I’m lucky when I get a full night of sleep multiple nights a week. When I do finally get a great night of sleep, I wake up knowing that I will pay for it the next night. 

Maybe I used up all my sleeping back in college. 

I read on the numerous MS feeds that I follow that lack of sleep is common with us MS warriors. Why is that? We are tired most of the time. You would think that at night we would sleep! But no. I go to bed early because I’m tired and then I wake up in the middle of the night. Wide awake. Writing a blog. I just don’t see the correlation to the holes in my brain. We work harder all day, every day, to do things that healthy people take for granted. Like showering. 😦 This should make us more tired. And it does! I could take a healthy 20 minute nap after I shower. Every. Time. Of course, no one has time for that. So why doesn’t our body just store up that fatigue so that we can use it at night? Instead we have to take naps during the day, just to make it through. We should be able to skip the nap and sleep through the night. I am sad to tell you though, this is not how it works.

A little while ago, when I was having really bad toe cramps, I understood the non sleeping. You can’t sleep when you are in pain. I get that. A lot of us go through having chronic pain, or just inappropriate outbursts of it at inappropriate times. Like when we should be sleeping. That makes sense to me. However, right now I have no pain. Just irritation. 

I would hate to have to add yet another pill to the pile. I believe that it is now time to go back to the research. How can I (Don’t shoot me for saying this. I’m already cringing internally.) naturally & holistically find a way to get better sleep? 

 
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Posted by on September 20, 2016 in Life with MS

 

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Colors and Detail oh my!

I have failed at my 30 day writing challenge. 

Things got a little intense here in my town. I let small people’s opinions of me matter. There has been great growth and valuable lessons learned though. When you are in a position that puts you in the public eye there is always going to be someone that will dislike what you are doing. You need to roll with this and keep doing the good that you are attempting to do.

So that said, I am going to try to pick up the writing challenge again. But first I wanted to talk about my health. It has been AWESOME! And not so awesome.

My contact. Even though there are days that I forget to put it on, I love it. I can not stress enough how it has changed my life. 

The day that I finally got my correct lens was amazing! I had no idea that so many colors exist in the world. Or that everything has so much detail.

I had lunch that day at my in-laws house. They live in the middle of the woods. I had no idea that there were so many trees! And the different shades of green! Leaves! I have never been able to see all of the different leaves! And were you aware that clouds have definition? The things that I didn’t even realize that I couldn’t see that were now right in front of me was astounding! I was just a little bit excited. 🙂

Fast forward to my vacation to Disney world a few weeks later. 3D! Oh my goodness! Have you people seen this?!? Sure I’ve been to 3D movies before. I was never impressed. I always thought that people were exaggerating seeing things fly at them. Please people. But now I can see it too! If I could have spent my whole trip just doing 3D rides over and over again I would have. The people around me must have thought that I lived under a rock. With my “can you believe this? Those things were actually flying at us! And I swear I could touch Donald! (From the middle of the theatre).” Mickey’s philharmagic and Star Tours were my favorite! And Fireworks! Did I mention Fireworks?!?

On the flip side; wearing my contact wreaks havoc with my brain. Talk about over stimulation. So the boat is back to rocking on a regular occasion. 
The last couple of months have been a lot for me. It was all of course worth it, with all of the holiday events. My body gave up on me though. The day after Christmas, after showering, I walked into my room to get something. 2 hours later I woke up. 😦 I slept for the next 3 days. 

I had my yearly MRI right before Christmas. Those results should be coming in soon. I’m sure they will say that I have no new lesions. Yet a significant amount of the old ones are active. I keep having nightmares that they are going to put me back on solumedrol. You know all I really need is some rest. Not more drugs. So I’m continuing to take advantage of my week off. Praying that by the end I can comfortably get back to work. Here’s to dreaming!

 
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Posted by on December 30, 2015 in Life with MS

 

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Small annoyances

I’ve decided that typing might be good for my brain. Maybe if I keep using that group of nerves that are apparently exposed now, they won’t forget how to function. My right hand still feels heavy when I use it for things that require thought. Unlike say the picking up of my wine glass at dinner last night. I had now problems with that.

I do have a question for other MSers though. Is dehydration an issue for anyone else? If I don’t consume at least 4 glasses of water a day my symptoms are worse and I wake up the next day with a headache. My biggest problem with this is that I hate water. I am forcing myself to get used to it. I am a coffee drinker. As in the only thing that I drink is coffee. Well except when it’s wine. Now however, not only do I have to drink water, but every time that I drink coffee, I have to make sure that I have another glass of water to compensate for that. So as far as I am concerned this has become another unfortunate and frustrating side to this damn disease.

 
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Posted by on December 4, 2011 in Life with MS

 

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New holes, Not just fluff

I have been gun shy with accusing any physical problems of being caused by MS. Ever since the whole neck thing, I decided that if I could walk, talk, see, and move all my pieces then I must not be having any symptoms. However, there have been things that have been bothering me. But I have shrugged these things off as being a symptom of fatigue and stress. Not that I have a lot of stress, but I have been ridiculously tired. My biggest problem is also the reason that I haven’t written in a while. There is some kind of disconnect between my brain and my fingers when I try to type. I keep hitting wrong keys, or missing keys all together, or just completely forgetting why I was bothering in the first place. In the beginning I was blaming it on my nails being too long, then I decided that I was just too tired, but it’s nice to know that now I know the real reason. There actually IS a disconnect between my fingers and my brain. It is the product of one of my new holes. There are 3. One had something to do with memory. I think that is still ok. One has something to do with thinking while using your hands. I don’t really understand why, but it is very frustrating. My fingers get very tired and heavy and don’t always move in the direction that I tell them to. Which makes it take significantly longer to type anything. When I am really tired, I don’t even have to be using my hands and it feels like I have a heavy bracelet on and can’t lift them. The strangest part though is that I CAN move them. It doesn’t actually stop any motion. It just feels like it would be impossible to try, then I lift my hand and am shocked that it doesn’t weigh a thousand pounds. The other hole had something to do with my legs, but I passed all of those tests so they must be fine too. I like to think that the reason I am not experiencing all of the symptoms that I could be is because I have been taking the cinnamon, the vitamin D, and a regular vitamin every day. I don’t really know if those are doing anything, but I like to think that it is helping.

I am all set up for my first Tysabri infusion. It’s next Tuesday. Unfortunately I have to pull my little one out of school in order to go. I feel like the worst mother in the world. Of course he doesn’t care, and he is only in pre-school, but I hate having to affect his life with my crap. I will make sure that the rest of my infusions are set up at a convenient time, but this one was very rushed. I think that if my doctor could have done the infusion at my appointment yesterday he would have. I was disappointed when they told me that it would take 3 months for me to notice the effects of the new drug though. I was hoping for instant gratification, like a little kid, I wanted my present NOW. The doc suggested PT for my hands. I actually have a sister-in-law who is a couple months from finishing school for PT, so I am going to ask for her help. The doc agreed to this, but only for the first month. He said that if it wasn’t working that he wanted me to go to someone that he suggests. So we will see how that goes. I haven’t been in the best standing with any of my (or Rich’s) family recently. Asking for a favor might not be the best idea. 😦 But if I can not spend thousands for PT right now, I would really appreciate it.

Keeping my fingers crossed for Tuesday.

 
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Posted by on November 30, 2011 in Life with MS

 

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Tired

There are many different forms of tired.

There’s what I like to call “normal person tired” which is when you feel you have done enough and really just want to chill out for a while. With this tired if you still had things you needed to do you could still do them. Maybe begrudgingly, but still physically capable. A lot of people actually end up getting a “second wind”.

Then there is something else that I have experienced. I call it “new mom tired”. (anyone who has ever used the term “slept like a baby” never met my kids) Of course this form of tired applies for any reason that you aren’t getting any sleep. Every night feels like a huge struggle. You know that you aren’t going to get any sleep, so you try all sorts of different tricks to make it through and each night is a different strategy. Yes, with this tired you are dragging, but could easily perk yourself up if necessary and still totally capable of functioning. Deliriously at times, but still walking and talking and hopefully not making big decisions. = )

Within the last year I have learned a new kind of tired. I really did think that the “new mom” tired was going to be the worst that I would ever experience. I was wrong. Now I have “MS tired” to add to the list. Well maybe not add so much as replace since I am done with the baby scene. So until I am pulling all-nighters because of school, I should be good in that department.

“MS tired” is a strange feeling. I have read a lot of different accounts on what this means to other people. For me it is like being trapped in smoke. I start to have a hard time breathing and I can’t think straight at all. Nothing feels real. It gets very hard to move, a lot of people have said that their legs feel heavy. For me it’s more like my brain has gotten heavy. Like I forgot how to walk. Like I have to remind myself to breath in and out. My brain just seems to loose functioning skills. Not to mention the fact that my eye sight also starts to be not quite as sharp as it should be. I believe that is the original holes showing themselves. Give me a good half hour to an hour to sit/lie down and my brain seems to come back to me, but the recovery ends there. I need a couple of hours of sleep now in order to fully function again. I am definitely done for the day after this.

The most frustrating part is that you never know when it’s going to happen. Some days I can do lots of things and have absolutely no problem. Then other days all it takes is for me to do a little bit of wash and then the rocking starts again and god forbid I don’t heed the warning and slow down. Otherwise the next thing you know I’ll need another 3 hour nap when what I really need to be doing is hopping in the car to pick my son up from school. Really, where is my chauffeur when I need him?

I wish they made an energy drink for this type of tired.

 
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Posted by on September 12, 2011 in Life with MS

 

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