Saturday, August 01, 2009


Every morning during the week I send out a morning email to my brothers, sisters, nieces, nephews and a few friends. This morning the email the email was about scattering. My oldest son was on a motorcycle trip. My wife was going to visit our daughter in-law and grandson. One son and fiancée were attending a wedding and a family reunion. Another son is coming to spend the weekend here to care for me and while here to work on his car and do some grilling and smoking a pork shoulder. My daughter said something about being here for part of the weekend while her husband helps his brother in-law work on the car and to also help with the grilling and smoking. It seemed to me that everyone in the family was scattering and so "Scattering" seemed to be a great subject for this morning's email.

Earlier this week I had an E.N.T. doctor appointment to see if the doctor could determine why my voice keeps getting weaker. When the doctor was examining my throat and vocal cord muscles she told me that I had "an interesting anatomy". Now I don't know what the doctor meant by "an interesting anatomy", but a friend told me yesterday that those words might not be something you want to hear from your doctor. The doctor went on to tell me that because of my weakened condition, I would use my vocal cords for a short while when speaking and then start using my "false vocal cords". She also went on to say as this demyelinating disease progressed, I would find myself expending more and more energy talking and doing many of the other things I have always taken for granted. In the past three doctor visits all three doctors have told me the same thing. Maybe it is time I sit up and listen to them. I remember the arguments I had with my neurologist when she wanted me to start using a wheelchair and then again when she thought the time had come for me to retire. I remember one thing my neurologist said, was that my life would become a life of conserving my energy. I have always considered this as a battle with controlled retreats, meaning I will only give up when I can no longer safely do something, or when doing something takes too much energy.

However, I now find it difficult to determine when doing something will be doing too much. How does one know in advance when doing simple things like making a large salad or putting all the ingredients in the bread machine will be doing too much? Sometimes it turns out to be too much and sometimes I find that I can make the salad or start the bread machine. Then there are the days when you ask someone to make the salad or start the bread machine and later think "I feel good today, I should have made the salad or started the bread machine". Yet there are other times when I feel like I have enough energy to start an activity only to find that half way through I must stop and ask for help. I do know that if I guess wrong and do too much I will pay for it by feeling absolutely exhausted, to the point of tears, for a couple of days.

I find that I am amazed at the amount of energy others seem to have. In one days' time they are able to go to the gym, go to work, go shopping, make meals, do household chores and still have energy. I don't understand how they find the energy for all this. I find I get exhausted just having visitors for one hour or spending 2 - 3 hours going to doctor appointment or to church and returning home.

So I return to the question of how much is too much. And when I don't do something, how do I get myself to stop feeling guilty about asking for help. My brain tells me I should do these activities that I used to do without thinking about the consequences. One of the things I find interesting about this demyelinating disease, is that my thinking abilities don't appear to be effected; just my physical ability to do the activities has been effected. I am certain I am not the first person with an incurable disease to deal with these questions. However I am now at the point where I am dealing with them.

I hope you can understand why I used Ramblings as the subject for this entry.