Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Rinse, Wash, Repeat:

Of course that’s not right, but that’s how my mind works now.

I didn’t realize for quite a while that I didn’t have it right. I thought it was, but then I realized, it’s wash, rinse, repeat.

But that’s part of the problem. I don’t do things in order or at least it takes a long time for me to do things “correctly”. I have problems doing basic things in life that most people take for granted.

For instance, I now have to spend at least an hour or more getting ready to go to the grocery. It used to take me 10 to 20 minutes to gather coupons, go through grocery ads, and figure out what we needed from the store. Now, I avoid going to the grocery store, and wait till the point that we are completely out of cheese, milk, cereal etc. At that point, I have a hard time figuring out what coupons we need, where the best deal is, and what we need from the store. It creates a huge amount of stress.

I think that’s why I tend to find comfort in my car. Yes. I find COMFORT sitting in my car. I’m not sure why. I guess, it’s because it feels like I’m going to do something productive. It might be because after a certain period of time elapses, I end up going somewhere and that tends to make me feel or believe that I have done something.

There are many days where I find myself sitting in my car with no true understanding of what I’m going to do next. I’m not sure where I’m going to go or even if I need to go anywhere at all, but at least I’m DOING something. Right?

Sometimes, I will end up sitting in my car for 15 or 20 minutes not sure where I need to go or what I need to do. Or I find myself sitting in my car trying to organize or complete the things I should have done while I was inside my house but forgot to do or was too distracted to do.

I wish I knew why the inside of my car feels so comforting, like a security blanket.

I’m guessing that part of the comfort is because there are so few distractions when I’m in there. There aren’t any kids, no puppy, no phone calls, no T.V. There is the radio, but I can not listen to it. It’s too much of a distraction. I can’t handle the noise. (Try explaining that to your 16 year old son.) I think that’s why I like being in the car. It has become a quiet place for me, a sanctuary.

Not being able to listen to the radio any more is heartbreaking to me because it was something I loved to do, but now I find it takes all of my attention to drive to somewhere or to remember little things like refill my prescriptions, or pay a bill, or go to work.

I hate how things get pushed around, and how I can’t get as much done as I used to. It makes me feel like I’m lazy. I’m not, but because it takes so MUCH more energy to do basic every day things, that I avoid doing them all together. I find that I avoid tasks like writing letters, mailing letters, calling the pharmacy or doctors office, or the insurance company, or even talking to my friends.

I will actually forget to call my friends and family, which has come with  a price. I have begun to experience an unintentional detachment

The simple things are no longer easy and the difficult things seem impossible. It truly is for me; rinse, wash, repeat.

 

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5 thoughts on “Rinse, Wash, Repeat:

  1. I know exactly what you are talking about. Especially when you mentioned the no radio in the car! I have that same issue, it seems I forget where I’m going, or even stop paying attention to the road. I used to crank it up and sing along, now I stare straight ahead and run thru my errands in my head over and over. I even have a hard time when I have passengers, I usually don’t drive when my husband goes with me because he and I get talking and I always have issues with my driving. It sucks!!! I will go somewhere, just to be alone. Here’s an example tomorrow for the 4th of July we were invited to a party, I am not going. I don’t feel comfortable in crowds, but I told my husband he has to go. Not because I feel bad about him missing the party, but because I want to be alone. Before this happened I was a social butterfly, always wanting to be out with people. Now, as much as I miss people, I hate when I am forced to be social. I don’t mean dislike, I mean HATE it!!! I think I have told you that all my family and most of my friends have walked away, I am now realizing (thru therapy) that I pushed them away. So, now what? I cry when I’m alone, but I don’t want to be around anyone. Just sayin, I understand. TTYL, Deb

    • I know this might sound funny, but that brings me SUCH GREAT comfort. I am exactly the same way Deb. I was a “car singer”. I studied theater in college, and I had years of training, but I don’t sing, hardly ever anymore. I simply can’t sing and drive. And like you, it’s extremely difficult for me to take part in conversations when I’m driving. And it’s extremely difficult to be a passenger in car because I get extremely car sick (which is also something new for me). I’m actually getting car sick now even when I drive.

      I find that I’m becoming less social because it’s so HARD for me to communicate with people. It’s hard for me to interact. It’s hard for me to participate in conversations. My speech has improved, but it’s still so hard to stay focused and speak coherently. It’s also hard to be in a group of people. All of the noise distracts me.

      You know, every day things, like talking on the phone or meeting with people is so difficult, that it’s easier to just not do it. It’s so much less stressful.

      So, I have to say that maybe you did push people away, but if you are like me, it’s because these social situations are so much more difficult to deal with. It’s just too hard and stressful.

      I am glad you have someone to talk to through therapy. I think it’s a must when you go through something so traumatic as this. And I think I understand what you are experiencing. It’s like a breath of fresh air to know that I’m not the only one experiencing it.

      Thank you for sharing!!! 🙂

  2. OMG, I get car sick too. It’s new for me as well! I also feel out of sorts in groups. There’s to much noise, don’t know who to listen to, feel like my head is going to explode. Thankfully, my husband can now tell when it’s getting to much for me, as I just walk away and try to sit in a quiet area. He then makes an effort to end our time there (wherever that may be). When I am in social situations, I find I am so self concious of how I look and speak, that it makes it worse. My tremors get worse, my speech gets worse as well. All I can say, is ahhh, it is so good to hear I am not the only one, like you I thought I was alone. Thank you, Deb

    • EXACTLY, Deb!! Exactly. I also find it hard for me to stay on topic. And if someone asks me questions that I’m not prepared to answer or not ready to answer, I have a hard time thinking through what to say, or sometimes, I don’t understand what other people say. I’m working part time as a sales associate, and I swear it takes SO much concentration that by the end of 3 or 4 hours I feel sick. I just can’t focus long enough. I will literally not be able to understand what a person is saying!!! And I truly believe that it’s not getting better but getting worse!! I had that problem when I first developed CPM/EPM. I couldn’t understand what people were saying, but it got better for awhile, and now it’s getting worse. It’s so frustrating.

      You have no idea how better I feel knowing that this isn’t something I’m making up in my head. Because there isn’t information out there for us and doctors just don’t know, when I explain things like this to them, they look at me like I’m completely nuts! Truly. My GP, bless his heart, he is trying, but when I told him I developed motion sickness recently, he told me it was because of migraines. But, I don’t have motion sickness when I have headaches. I have it ALL the time, like 80% of the time I’m in a car. It sucks!!

      Anyway, God Bless you! We aren’t crazy-we just have brain damage 🙂

      Take Care!

  3. Yes, yes, staying on topic or understanding wut people are saying is an issue to me too! It was really bad in the beginning, got better for a while but has since gotten worse again. I think it has kinda leveled off though. Hasn’t gotten worse in quite a while (not goodby any means though) I tend to walk away before someone is finished talking. Then later, I think; hmmm, what were they saying? LOL!!! Personally I AM crazy too:) TTYL, Deb

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