I am so tired that tired doesn't even describe it. And this was on a good day!
As I look back on the fall and winter it is mostly a blur. I can remember some things because of pictures. Other things I remember only because I wrote them down. Life is still hard now, and my health is still bad, and I still fight my body each day to make it move. Yet it was so much worse last fall. I forget how bad it was until I stop and think about it, and even then it seems unreal. Was I really sleeping 15 hours a day? Did I really have to be in bed for 21 hours or more a day because I couldn't even sit up in my recliner? Could I really not carry on a detailed conversation? Was rolling over in bed really that exhausting? Were normal sounds really so painful to my ears? Yes. Last fall getting adequate food, sleep, and rest was about all my body could do.
This winter was a little easier. I still needed to be in bed about 18 hours a day, but I was able to be with my family in the afternoons, and I was usually able to eat supper with them in the evening (in my recliner, not at the table). I was able to play quietly on the floor with my children. I was even able to go out sometimes in my wheelchair.
This spring has brought slow and steady improvement. Looking back week to week I don't usually notice a change, but as I look back month to month I can tell that my health has been slowly improving. I am pleased to say that I am feeling better this month than I have for the past approximately 10 months. Although I still have a ways to go before I am back to where I was last summer, I can see that significant improvements have been made in the past 8 months, and I am hopeful that I might even be able to get back to my baseline a month before the crash.
For the first few weeks of IV treatment I had one of those great big IV poles at home. I requested a smaller pump, and home health sent over this portable battery operated IV pump. Don't I have the cutest little IV pump? :) It is so convenient too. The black bag holds the pump and a bag of saline. I can go anywhere with my IV now. This little pump has travelled with me to Georgia, to doctors appointments, on a medical trip to Ohio, to the zoo, out to eat, and over to friend's houses.
One problem with travelling is that I can't take my nurse with me to start a new IV line each time. Lucky me, Will has learned how to start IVs! He has started my line for me probably more than a dozen times now. I'm so blessed to have a husband who will do that for me.
Last month we travelled to Ohio to see my dysautonomia specialist, Dr. Grubb. It was really good to talk with him and hear his opinions. Dr. Grubb believes that I have a mitochondrial disease. He said that the severity of my symptoms goes beyond just purely dysautonomia, and indicates that something much more serious is causing my dysautonomia. He wants to treat me for mitochondrial disease even though I haven't been officially diagnosed with it yet. There is no cure for mitochondrial disease, but there are some treatments that can help to slow the progression of the disease. The treatments taken for mitochondrial disease are often referred to as a "mito cocktail."
This is my current mito cocktail. These supplements assist the body with things like muscle movement, cellular growth, and energy production at the cellular level. They aren't a cure, but they have been helping!
There were many days last fall that I didn't think recovery to my previous baseline would be even remotely possible. I'm still not doing as well as I was last summer, but I am happy to say that I am seeing some improvements, and I am hopeful that there are still some improvements to come.