I have noticed the last couple days I have been very unsettled. Basically tired of feeling like a bump on a log, or useless and feeling like I have no control or effectiveness with my house or my children. I think part of it is we don't have school any more and I could do school with the girls for the most part. I had "dreams" of playing this summer and then it hit me the other day, "hey silly, you still can't do anything"...gggrrrr. Though it doesn't feel like it, there has to be some progress going on upstairs because I noticed last week that my mind wouldn't shut off. Wow! Haven't missed that but I'm not sure I want the crickets back either. I don't want this to be misunderstood, but I am going to sound weird when I say that I still feel extremely blessed and it is still well with me that I have Lyme. There are still going to be "valleys" in the journey and I believe I may be upon one. For everyone else, today was a "different" day with cookouts, swimming, hanging out with family and/or friends. But, for me, it was another typical day of no energy, still can't clean my own home or do things with my kiddos. Yesterday was such a reminder of that when we went over to a couple's house after church for burgers and swimming. In some ways it was nice to get out of the house and feel somewhat like a normal person. I enjoyed being around other people and not staring at the same four walls of a house I don't have any control over. I fooled myself into thinking, "no problem" but was quickly reminded that I am "sick" when I wasn't processing the conversation very well (I felt mentally challenged) and felt sunburned and I wasn't in the sun that much. By the time we got home (we were only there for a couple hours) I was completely beat and wiped out. All I did was sit and eat a hamburger (no bun) and sit in the shade and watch my kiddos have fun in the pool. But all the while reminded of how little I'm feel I am able to be "mom". It continued today. The best way I can put it is I am a lump of flesh just taking up space.
I/we knew this fight would take a good solid year or more but I am so ready to get back to doing things. As I pondered (I have a lot of time to ponder) today I realized that before this last weekend I had something to look forward to. I am on such a ridiculously restricted diet that I was looking forward to my birthday because I had made up my mind (shortly after my daughter was mortified that I wouldn't be able to eat cake on my birthday) that I was going to "cheat" on my birthday. Fortunately, or unfortunately, depending on how you look at it, a day of cheat turned into a slight week of cheat. But see, the whole food things has be completely discombobbled. Due to Lyme I am not supposed to eat any sugar, starches or carbs. Any type of sugar feeds the bacteria and we don't want to do that...they have been partying for over 10 years...party is over! On top of that is my natural health doctor saying I can't have certain foods due to food sensitivities. Eating food that your body is sensitive to further suppresses my already severely suppressed immune system not allowing it to fight the Lyme. At first this was extremely overwhelming and it took Chris and I a while to "get it" much less anyone else. But, starting January 19th I committed to fighting this disease whole heartedly because I wanted my life back. The first 3 weeks were so challenging but then it eased up. Basically, at home we do both...the Lyme diet and the food sensitivities. If we are out for some reason we stick to the Lyme diet basically because one of the food sensitivities is black pepper. Hello! Everything in the restaurant world has black pepper. I do find when we do eat out or I eat something with black pepper I do get a headache. One of the other sensitivities is soy. Hello! Almost everything has soy.
This last Saturday night my mother-in-law and Jimbo took me out to Carraba's for my birthday. I had ravioli and salad and cheese sticks and the best tiramisu and brownie explosion I have ever had! Complete cheat and I don't regret it at all. And I knew, after being on a strict diet for over 4 months and then cheating, that it would be difficult to go back to the restrictive diet. But looking forward to the cheat helped me pull through the last 4 months. Now, I am lacking something to push for and I feel I have such a food complex that I will need to see a food therapist to ever think of food again normally.
On one hand I have the natural health doctor telling me to have this shake and eat not sugars, carbs and starches. On the other hand I have my other doctor saying I need 30 grams of carbs a day or I will be facing ketosis. I look at the shake and it is exactly 30 grams....bummer (I was looking forward to adding something back in) but cool because my carbs were covered. Then I'm taken off the shake because the natural health doctor feels its detoxifying me too much and that I have developed a food sensitivity to an ingredient in it. Huh? Okay, no problem...I get to add in a few carbs...piece of toast or one tortilla. Nope! Those are bad carbs. You need good carbs. Is there such a thing? Then I'm told I can have an apple. I am so confused!
I've realized for some time now that I was having trouble with food. No appetite and I have come to a point that if its not prepared for me I won't eat. I can get the girls fed with no problem but when it comes to me its too much mental work to figure what to eat and with nothing sounding remotely decent its just easier to not eat. With the birthday gone (and so is the tiramisu) I'm really in a pickle because now there isn't a definitive date to push for. If it were up to me, I'd quit eating altogether. I don't enjoy it. I don't look forward to it. Its just something I have to do because I have medications that deem it. Yes, I have lost weight in the last 4 months but I am scared to death of what will happen when I am given the clearance to eat again. I'm afraid I will either eat non stop and blow up like the Good Year Blimp or I will have a deep rooted food complex that I won't eat again (I will never pass up Tiramisu or the brownie explosion...that part I know to be sure).
I know I am where I am for a reason. I'm at peace with that....or am I if I'm feeling "ansy" and using quotation marks a million times in one blog? It is up in the air right now how much longer the midline will be in. The current medication order has 2 1/2 more weeks left. The midline is showing wear (keep in mind its made to last 6 weeks and we are coming up on 10). The doctor was not real happy with the CD-57 levels last time we saw her. So, I'm not sure what will happen. I do know that the right arm has gotten so week from not being used that it is very difficult to write with it. I thought it was weak and losing strength before the midline but now its even worse. I am saddened that my piano playing will near the same and yet it already was being affected. My kids are on summer vacation but they can't get in the pool when its just the 3 of us home and there is very little I can do with them (but I can still snuggle and I am still the Queen of Tickle thanks to two feet and one arm). It bothers me that we've been at our current church a year now and people don't know the us before Lyme...but then again, we don't either. Due to my lack of ability to process while hearing something or reading something that all they know is this blank-faced woman that has nothing going on upstairs. They don't know us any differently. It has made building relationships very difficult.
When people ask how I am doing it is a challenge to know how to reply. On one hand I want to be real, not fake, and say, "I'm hanging in there" but I'm tired of saying it. I was challenged one day walking into church. I felt the holy spirit convict me as I'm walking into church that I needed to be a light that points to God. And so I have tried to change my answer to, "I'm very blessed" but then people think you are doing great and that isn't the truth either. The truth is I am extremely blessed but that doesn't mean I won't have valleys, and struggles, and days when I am so tired of this disease. Its because I am so blessed that I want to be done with this disease and be back to doing things. I am a doer and I am ready to be on the giving end and not the receiving end. Because of God in my life, because of a relationship with Him, I can be in these valleys and still have hope and desire to be better. Without it, life is vain and empty and useless. So, please don't mistaken the times of struggle as bad or me lacking faith and hope, but realize that I am human and its natural to have valleys as long as I am looking up at the Son for my direction.
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