I have been pretty hopeful with this treatment. It seemed like a better solution on my body, a better recovery timeline and better chances for healing. The first two are clearly true, the last one has yet to be proven. It hit me today as these crappy days continue to linger, that there is no promise that this will get better. Well, I have to assume its gonna get better. But no one will promise it will be over. That promise I was looking for...which no one is willing to give.
Dr. Earl came to see me. I was trying to be positive and was ready to tell him, this might be a better day, he said " I can see you are still struggling. It is written all over your face." Some things you can't hide even when you are prepared to but your big girl panties on lol. He reminded me that he had told me I would not like them very much and that I would want to quit. I do remember that and I remember thinking, that will never happen. I realize now it is not about pushing through when it gets hard because I believe the majority of us would push through, if it meant health. What I think the real dilemma at this point is, is the uncertainty that this is going to work.
Trust me, its not that I am being pessimistic. Its just that the symptoms are back with such a vengeance, it feels like they are planted within your body forever. You can't imagine how in one week, it could get much better. I sometimes can see how my physical abilities are improving despite the weakness and lethargy. But my cognitive skills are so off that I feel like I sometimes am functioning as a child. It is embarrassing, it is frustrating and incredibly discouraging because what if they don't come back? They say they are the toughest symptoms for Lyme patients recover from.
It really all makes no sense to me. Many times I considered my self lucky because I did not get as bad as some patients. But yet, they talk about how the cognitive effects are the last to be realized. Many patients are crippled in wheelchairs before they realize any cognitive challenges. So why are mine so bad?
I have to travel home today for a day and come back. Brian is going back with me and for that I am grateful. He used to want to travel with me because of my comfort and confidence travelling. Now I am happy he will be traveling to help me. I mix up my airlines (wrong terminal, wrong floor), my flight - the people are really kind in Salt Lake City airport. I have to ask questions every step of the way, and ask them to repeat it, because my comprehension seems delayed. I went to prepay gas, I looked at the pump number, relook before I enter the store and forget by the time I reach the cash. A really good example is getting ready this morning, I have to write down on piece of paper what time I have to leave the hotel and keep reminding myself periodically. Each time I look at the clock, I can't figure out how long I have without much effort. So I start a paper count down - 45 minutes, 25 minutes, 10 minutes. That way I can calculate it easier and don't panic each time I look at the clock. There is always a way to cope but it just takes so much effort. And it does let that doubt enter your mind. Just what my brain needs is doubt when there already is so much slowing it down.
I do think in a week, I am going to write a blog telling you what has improved. I have been warned that it won't be a dramatic improvement even then. I was kind of hoping that I would be the exception on that. I have learned that there are no exceptions for me in this process. They insist you have to keep up the treatments once at home. Like, I told you before, I have most of that figured out except for one. That will take a machine...which I understand patients have purchased since leaving. They maybe should have told me that before. There are smaller more portable options. I am just having trouble determining if they will be as effective or not.
I asked about the longest serving, full treatment patient for Lyme and he is over the 4 month mark and doing great they say. He is still doing all the treatments at home, which is great. But makes me wonder if maybe you are never done this process? I won't knock it because I believe at some point soon I will feel that life fighting Lyme is better than living with Lyme. I just have to figure out the Pulse Electromagnetic Frequency treatments, if that is what it will take.
I have decided my worst case scenario is doing these treatments for life. I can accept most of that, if it means my brain power will return. So that is really not my worst case scenario, it is if my brain power doesn't return. I remember my grandma always saying she only wanted to live as long as she "kept her marbles". I have temporarily lost my marbles and am focussed on finding them. I know the clarity is in there. I had it for a day after I started antibiotics but it left and never returned and I had it for a day or two after starting treatments in Utah. So I can only assume, it is there.