Hyponatremia and Central Pontine Myelinolysis

Has it really been a year?

Hello, All!

I hope you’re doing well! I am SO sorry that it has been so long since I last made a post. I am still alive and kicking.

Tonight, I am nursing a sinus headache and because of that, this might be relatively short.

I have no idea what I have posted in the past. I mean, I know generally what I have included, but nothing specific.

So, how have things changed in a year? Seriously, I have no clue because my short term memory is still impacted by the injury. There are obvious changes; my kids are older. I am older.

I still live very much in the now, and this still has significant complications for those I know and care about. People who don’t know me might misunderstand this lack of attention as a lack of interest, but it really is that I don’t have a great method of keeping track of time, people, or events. This means that I forget to call or write people. i don’t make doctor’s appointments that I need, or I show up to doctor appointments at the wrong time or on the wrong dates.

I just went back to work part time. It is hard even completing that job because as policies and procedures change, I find it difficult to remember or adjust to the new stuff. It also takes a significant amount of concentration and patience. In general, I find that it takes about 2 hours before I’m stressed and about four hours before I’m mentally and physically exhausted. It is hard for me to complete tasks prior to work and then spend time at work. After work, I am so stressed that on most nights, it is hard to socialize at all with my family. I become so overwhelmed that even our little dog’s attention becomes too much. I need quiet time. Literally.

I’ve heard autistic children have this same tendency.

I still have a significant number of daily issues with movements, blurry vision, tinnitus, balance issues. I have cramping in my hands, feet, legs and hips. The cramping because significant with repetitive movements, like typing and writing. I have found that a certain blend of medication has given me the most relief with twitches, jerks, and severe shaking. I use a combination of Baclofen, Gabapentin, and Carbidopa/Levodopa. That said, the drugs tend to peak with ongoing use. This leads to a need to increase the dosages. They help, but they aren’t a permanent, absolute fix.

I have talked to people in many different countries who say that they have the same issues.

I do believe it is very important to stay as active as possible. I have daily pain with walking and using weights, so I stopped exercising for several years. It didn’t help. I recently started walking again and using light weights. I still have continuous daily pain. It hasn’t improved with exercise, but the mental aspects did. I felt better mentally. I felt like I accomplished something, but honestly, it really hurts. Almost with every step, I experience pain. You have to push through it. If you can’t change it, you need to accept it. I know that sounds like such a bitter pill to swallow, especially if you have recently been diagnosed with the condition. It is hard, but you do become more accustomed to the pain.

A lot of my fellow CPM/EPM survivors have had the same experience. The activity helps, but prepare for physical discomfort. It is recommended that before you start ANY physical activity that you consult your doctor first. It is also important to start of slow and build from there. Don’t expect miracles and give it time. If you also have balance issues, etc, I definitely recommend that you do NOT exercise alone. There are MANY times during a walk that I slip or trip or just lose my balance. I have no doubt a fall will happen eventually, but on almost all of my walks, I have my friend go with me. You’ll be surprised at how many friends are willing to get out with a friend for an hour or so.

Well, that’s all I can manage for now. As always, I am interested in hearing from you. If you have a question or need help, please leave a comment, and I will try to get back to you as soon as possible.

Many Blessings! Have a great night (and hopefully, I’ll be back sooner rather than later) 😉