Balance is an important term for people with MS for many reasons. There is the physical balance that you lose which makes is hard to run, walk, and do yoga. For instance, I stopped running outside a while ago, when it got to the point that I fell every time. But luckily, because of the HSTC, I have regained enough that I can run outside again. I cannot run far, but I can do a combination of running and walking to get exercise and make me feel good. I can no longer do advanced Yoga successfully either. It gets too depressing when I just fall on most of the moves. To compensate for that, I have to do a more beginner friendly version. I do have faith that I will still improve in both of these area’s as I heal more from the transplant and my brain cells grow back.
Then there is the life balance that makes it so important to choose what you spend time doing because of the much reduced energy that you have. I can not work and still take care of my three kids. I am on permanent disability now. Making this choice enables me to make dinner for them and do their laundry while they are at school. This is not really a choice, however. I could probably work at a job that did not require any physical energy or mental alertness if I only did it part time and then spent the rest of my time in bed. But I could not make enough money to hire a housekeeper, and the nanny that would be necessary to do the rest of the family duties.
Yesterday, my five year of said to me as I was walking her home from school, “I know what you will do tonight.” I said, “What?” She said, “Lie in bed. Because that’s what you do every day.” This was a real eye opener. I do not do that everyday. In reality it is probably 1-2 days a week that I do that, and only when my husband is home. But if I tried to do more during the hours they were at school, it probably would be every day.
The most important thing to balance, for me, is my brain chemistry. Part of the reason I have not blogged in so long is that I have been depressed. MS causes depression. I no longer am able to produce the right amount of serotonin in my brain to keep me feeling OK. MS also causes anxiety, for a multitude of reasons. I did not realize my antidepressants had stopped working until I got suicidal. The good thing about knowing what is going on is that I would never act on these feelings, but it still makes it impossible to do much when you can’t stop thinking about how horrible, miserable, and unworthy you or your existence is. When I finally figured out what was really going on I got an appointment with a psychiatrist who informed me that after being on the same medicine for a long period of time, your body can stop reacting to it. So he switched me to a different drug, that works in basically the same way.
This helped a lot. Now, I want to clean the house. I want to cook dinner. I want to get out of bed. And most importantly I want to write again. I really need to finish my book. People are starting to hear more and more about HSCT for MS, and I want them to be able to read about my personal experience so they know what it is like. I think we are getting closer and closer to this being offered for those with MS as a treatment, rather than only allowed as a research project, and I want my book to be out when we get there.
As a side note, if anyone knows anything about getting a publisher for my book, or anything else I need to get the book finished and published and out there, please contact me!