Everyday is Different
Every day is different. In fact, every hour and minute is different since contracting this diseases. One minute I might be walking normal, and the next you’d think I was drunk. Another minute I might be talking just fine and the next minute words don’t escape my lips.
It is difficult coming to grips with the changes. While you want to make plans, you don’t really know what is in store. For that matter, do any of us know what is in store one day to the next?
Of course, we don’t, but we operate on the assumption that tomorrow we will feel like we do today. When you are told you have an incurable disease, the assumption changes that tomorrow you will feel crappy just like you do today. So, you go from making normal plans, and now you tend to see things as planning for the worse.
Having said that, you’re probably thinking I need to have a positive attitude. I’m trying, but I also have to have a realistic attitude. I’m thinking positive that by working with my doctors I will find a happy balance between medications, rest and activity. The realistic part is I won’t get better, but I will only get better at how I manage and cope.
So, yes, if I spend 30 minutes working in the yard today and feel crappy for three days afterward, I can probably plan on that being the result of 30 minutes of yard work. On the other hand, if I do 15 minutes, followed by an hour nap, and feel fine the next day, I can probably say I can handle 15 minutes if I take a nap after doing the work.
I can have a hope I might be able to do more than 30 minutes once I’m on the right dose of pyridostigmine and prednisone. However, to be realistic, my endurance may not ever change. What might change is how I feel between activities.
Gratitude is playing a big part in my positive attitude. I woke at 4 am and couldn’t go back to sleep so I went into my office, sat in my new chair (which I’ll tell you more in a bit), ate some food and piddled on my computer. I’m grateful I did that.
The other day the delivered and set up a zero-gravity chair for me. The doctor wrote a prescription for the chair, and I shopped around and all I could find online is stuff that cost $3500 to $9000! These are chair specifically built for people with problems like MG, MS, ALS, etc. I walked into Raymour and Flannigan and asked described what I needed a chair to do. The salesman took me right to a chair that was perfect. It was a tad over $1000.
After the set it up, I tried to use a laptop desk we have. The wheels made it so it would not fit next to the chair. My wife took the table legs, went to a local metal shop, they cut them off and ground the metal and didn’t charge her. I now have it configured so I can see and use it in such a way that it rests my neck and back muscles and is less stressful on my hands and arms.
As I sat in this rig this morning, I was overcome with a sense of relaxation I have not felt since getting MG. I was also overcome with gratitude for a Heavenly Father who has helped me work around limitations imposed by MG. My gratitude for my wife being wise enough to take the table to the metal shop and get it modified is also near the top of the list too.