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Tag Archives: MS awareness month

The Big One

Sight.

This is something that I really think that we take for granted. That is until it is compromised. I think that since eye problems are something that I have had to deal with since I was 7 it wasn’t as bad for me. The pain though…. But let’s start from the beginning.

My very first symptoms. There were a couple but since they happened at the same time I decided to let them share a blog as well.

It all started with Vertigo, then an up-beat nystagmus in both eyes, and optic neuritis. That is the order in which they were diagnosed.

The Vertigo I already described so I won’t do that again, just keep in mind that that was underlying everything else that I am going to describe. Adding that at the time it was so, so much worse. Like I had just gotten off of a spiny ride, but all the time. I walked into a lot of walls. 😦

Up-Beat Nystagmus. The clinical description is that the eye drifts down and then jumps back up to correct itself. Well for me it was happening so fast it was like it was bouncing. Besides it adding to the vertigo symptoms I didn’t really notice it. Except if I tried to look at just one thing all by itself. Like for the eye exam. The doc turned off the lights had me hold that stupid thing up to one eye, turned on the light box and asked me to read the lowest line that I could. Which for me is the giant E. Well I told the doc that if he could stop making it bounce then I’d read it for him. That’s when I got sent to the ER. 🙂 So unless you are used to having good balance most of the time, or stare at objects often, this symptom (when coupled with the knowledge that you have a disease already) isn’t that bad. It’s possible that having this all by itself would be different, but for me it was just the side show to the Optic Neuritis.

Optic Neuritis. This was the bane of my summer 2 years ago. Optic Neuritis is painful. I can’t think of anything real to use as a description. It hurt to look in any direction but straight ahead. Even then there was pain all around my eyes. Like the socket itself was hurting. I hate to get graphic with you but… It was like being poked with needles (around the eye) if you tried to look in any direction. Keeping my eyes closed was the best. Not always possible. Especially since this symptom lasted for around 6 months. The holidays were the worst. When people wanted to talk to me and I had to look at them. That was another thing. My vision was very blurry. I had to stare at something for a long time before I could actually tell what I was looking at. Unfortunately concentrating like this with my eyes brought back the needles. Except this time the pain was actually in the eye. People really worry about you when you are staring at them intently with tears in your eyes. Especially when all they just said was “Hey did you like the turkey?”

On Tyler’s first day of school that year I had to pick him up in their all-purpose room. The whole school lines up there by class to wait for their parents to come get them. I had never met his teacher, this was the first time in this school, I had no idea what I was doing or where Tyler was. So I walked into the giant white room with thousands of blurry things that looked like people and just stared. I’m sure I got lots of strange looks, but who would know. I couldn’t see. Finally I focused (painfully) and found Tyler. But that was a horrifying moment for me. It was definitely the closest I’ve ever felt to going blind.

On top of the pain and in ability to focus I had double vision. I’m not sure if that is actually part of optic Neuritis. I’m not sure if the focus problems are part of it either. They told me that the pain was. I did learn that driving with double vision is not a good idea. I did a lot of that. 😦 I was refusing to admit to myself that I actually had a problem. I wouldn’t let other people help. Hence my blog title. I’m getting better at that though. (not really 😦  I actually think that I’m just getting so good at pretending there is nothing wrong with me that people believe me now)

Unfortunately these symptoms lasted a very long time. I went through 2 rounds of solu-medrol. The only benefit that I got from that was that the day or two afterwards I was lucky enough to experience relief from the symptoms. Otherwise I was starting to wonder if it was going to get better at all or if I would just have to deal with this for the rest of my life and pray that it didn’t take away all of my sight. Imagine feeling like that. 😦 It was not fun. I found out that they make glasses that you can wear while driving to correct the double vision though. Good to know in case it happens again.      

Now I just pray that it never attacks my eyes again.

 
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Posted by on March 12, 2012 in Life with MS

 

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The Flipper Syndrome

Also known as foot drop.

I’m not really sure why it is called that. My foot has never actually dropped before. Again this is something that only happens when I’m tired. I swear if I never got tired life would be a lot different. Unfortunately that will be another one of these blogs.

So the flipper syndrome. Being physically, opposed to mentally or MS, tired is the worst for this. Thankfully it only happens to my left foot. It feels like all the sudden my toes get really heavy. It’s not that it’s hard to walk. Just that it is hard to flex the foot in order to take a step. If that made any sense. This leaves you feeling like you are just going to drag your foot. Which I now am constantly concerned is going to result in me tripping and landing on my face on the pavement. Or wherever I am. Stepping off of curbs is the scariest for some reason. I have actually started to have nightmares about taking a step off of a curb and my left toes catching making me fall and take one of the kids with me.

It is detrimental to their health that I always have at least one in hand.

I have a tendency to walk much slower and pick my leg up higher when I’m experiencing this. Kind of like marching. For those of you that don’t have this crazy symptom I imagine that it is a lot like walking with a flipper. Just one. Not sure if that makes it better or worse. Maybe I’ll be much better at swimming now. 🙂 Or imagine walking without flexing your foot at all. Just let your foot be dead weight. If they made socks that had weights all along the top of the foot that would give people a perfect example. Not that I want anyone to have to feel this, but in the spirit of awareness this would help. There should be a line of products that simulate this crap. I think that it would go a long way in helping family members and significant others understand what we are going through. And thank you but we aren’t making it up. And to the best of my knowledge there is no pill to take to make it stop. Or at least no pill that would be worth adding to all the other crap that we have to take. These are the little shits that we just put up with on a day to day basis. Not worthy of medication. But sometimes it would be nice if people realized that, no I’m sorry I can’t walk any faster.

 
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Posted by on March 10, 2012 in Life with MS

 

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Brain Fog

I thought that this would be an appropriate thing to write about today. This is something that only happens to me when I am tired. Today has been a whirl wind of activity. Leaving me searching for the clarity button. So right now I am writing about right now. 🙂

Brain fog is exactly what it sound like. It’s like your brain is in a fog. One of those pea soup kind of fogs. Were your headlights actually make it worse, you can’t see the house across the street, and you are praying that you don’t bump into anything. That makes it sound a little like it’s an eye situation, but it’s not. Visually everything is clear. It’s just that your brain isn’t registering it correctly. Maybe it’s just working slower. I’m not really sure why this happens. The only comparison that I can think of, for anyone who hasn’t experienced this, is being drunk. I mean really drunk. Not the giddy feeling or the staggered walking feeling. But the I know that I was just talking to you about something, but what the hell was it. Or spending hours searching for your car that is right in front of you. That kind of drunk. When those things happen, but you don’t really care because why did that matter? I forgot.

Ok so right now apparently my fog isn’t that heavy. 🙂 Since I was capable of writing this. But I did take a nap for the half hour I was home before I had to pick the oldest up from school. And now I am off to the movies with my new friend and her kids. 🙂 Loving life right now. 🙂

 
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Posted by on March 9, 2012 in Life with MS

 

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Vertigo

Ah vertigo, how you make my life so interesting!

This is an ongoing symptom for me. It gets much worse when I’m tired, but it is always there. People watching me sometimes must really think that I’ve lost it. It is not uncommon to see me grab onto the nearest item for balance. It’s embarrassing when that nearest item is a person. But that is rare, thank goodness. There are a lot of walls in this world. 🙂 And if there is one close I will just fall into it for support. This also can sometimes be embarrassing. For instance when I am dropping Noah off at school and can’t walk in a straight line and fall into the wall. That only happened once, but still embarrassing.

For anyone that has never experienced vertigo, I have a perfect comparison. If you have ever spent a long time on a boat, I’m talking days, like a cruise, and then you go onto dry land. That’s how it feels. Not exactly like it does when you are on the boat. Because when you are there you are expecting the movement. Your body makes adjustments. Your brain makes adjustments. But once you are on land you are still making those same adjustments, only the ground is not moving. And this comes as a shock to you over and over again. That is my life on a day to day basis. I keep waiting for my body to adjust to dry land or my time to get back on the boat so that things are normal again.

I am very curious to see (or feel) what this will be like while actually on a boat. 🙂

 
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Posted by on March 8, 2012 in Life with MS

 

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The Little Things

March is MS awareness month. In light of that I thought that I’d do a little bit of sharing. I have only had MS for a little over 2 years now but have had some interesting things happen to me. By no means are these going to be in an order other than, oh yeah and there was that. Thank goodness only one of them was serious and momentarily life altering. The rest are just slightly aggravating, or distracting.

Today I am going to share a little one. This is actually happening to me right now and has been for the last couple of weeks. There is a spot to the right side of my nose, only as big as a finger print, which is numb. It is very distracting. I spend a good deal of time trying to wipe it away. Since it feels like there is a sticker stuck to my face or something. Which makes me wonder if numb is the right diagnosis. Is it the nerves around the numb area that are more sensitive now? Or are the actual nerves more sensitive? Which would make it so that nothing is actually numb? I will say that it makes me self-conscious when in public, because as I said, it feels like there is something stuck to my face. So yes, just a little thing. I’m not in pain and everything is still moving. But it is aggravating.

 
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Posted by on March 7, 2012 in Life with MS

 

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