am laying here unable to sleep, wanting to be in church but the body is not cooperating. After a night of little sleep and after taking something this morning in hopes to get some sleep only to find my self wide awake but groggy I decided to put thoughts down in the blog. Due to the lack of sleep over the last several months and the sleep aid in the last couple hours I'm sure my thoughts will be random but never the less, still my thoughts.
The ever eluding sleep thing is really getting to me. We have been given four different sleep aids to try to get me to sleep at night and yet sleep eludes me. For example, last night I felt the effects of the sleep aid, sure that I would crash when I put my head to the pillow and yet as soon as the my head hit the pillow my eyes are shot wide open. I try to lay as still as possible in hopes the body will slip into sleep. I pray hoping I will slip into sleep as I pray but I find I run out of things to pray for...literally. I try just laying there listening to my heart beat in my pillow. I try all kinds of things and before I know it several hours have passed. Last night I looked at the clock and it was 2 o'clock and I was still wide awake. Some time after that I drifted into a sleep where I fall into a half sleep and then wake up, drift wake up, drift wake up, and this continues for the rest of the night and I toss and turn. I think I might have finally fallen asleep around the time Chris' alarm went off. There is no deep sleep. Its all superficial. I can't think of the last time I had a great night's sleep....before January.
At this point in our journey I am not only physically drained but I am emotionally drained. I feel I live each day in survival mode, ending each day thanking God I made it through another day without disastrous events. I still have days that are rough and days that are managable. I believe we have had 4 herxes since we switched to zithromycin in January...one being this last week.
The last several week have been interesting because I have had random things reappear or happen. My head started itching a couple weeks ago so bad I had Chris check for lice. Natural health doctor says its the over build up of yeast in the body. Not to long after the head started itching I broke out in a rash that last for almost a week. It was between the knees up to the neck with some spots on the arms. Clueless as to what sparked that. Then I had, with what I think was the latestes herx, a reappearance of old symptoms, severe calf cramping, shoulder muscles tightness, swollen lymph nodes, hips stiffness, back aching, headaches, hands hurting, nausea, etc. All this is goes back to before treatment began which I find interesting, especially since we have had 3 bands reappear on our Lyme test. I'm hoping all this just means the bacteria is coming the to surface and is being killed. These are my hopes.
Other weird things are a bruised toe nail for no reason. Natural health doctor says its just super sensitive. Lovely. Welcome to my body where anything can happen and its one thing after another. There is always something nagging at me...not one thing, usually more.
The heart appears to be much happier on the 10 mg of Coreg now that we have backed down from 30 mg. The chest tightness and constant trying to get in a deep breath of air, and getting out breath doing simple tasks has gotten better and the blood pressure has returned back to my normal low (97 over 57) and not the super low (81 over 47). I still have bucket head that gets annoying anytime I am up and moving around which I am supposed to be doing more of to recondition the heart. Basically, it feels like I'm breathing out my ears and I have feed back in my ears. I can't tell how loud I'm talking and I have difficulty understanding others. Natural Healthy doctor says its related to blood pressure and to take it as a sign to stop. Hmmmm, doesn't take much to get bucket head. I get bucket head getting ready for church. Why, just taking a shower I get bucket head. Basically she said that the heart's structure is in good shape but its just "pooped" out.
My last post I was at peace, layed back, chilled. And somewhere over a weekend or night I lost that peacefulness. I seem to go in waves of this and I'm trying to figure out why it happens because I would much rather live in the peacefulness then in the state I'm in right now which is more cranky...I'm sure there is another word for it.
It happened around the day I had the CAT scan for the heart. I had never felt so alone in my life that day while having that test done. Chris was out of town. In some ways I began resenting him for being out of town. I felt like he is able to just go on with his life, saving the world and I am left behind. I felt I had no advocate. I just felt extremely alone. I felt other people had people to take care of them but that I didn't and that I needed someone but that I needed more then hour here and an hour there. Maybe I needed more then anyone was capable of giving. The whole purpose of this test was to keep the heart beat down and they kept asking me if I had been given a prescription to take before the test. Um, no. I tried not to get upset that someone messed up and just kept reminded myself that things happen for a reason. Then they handed me a clip board and while two nurses stood in front of me I filled out questions about the monthly cycle. Without my phone and without my husband (whose my memory) I was at a loss. I didn't know what the date was, couldn't remember the month and was so scared they would declare me incompetent. I asked what the date was but then couldn't subtract my cycle day from the date. So, I took a stab in the dark and just guessed at the date of my last cycle. The next thing I know I'm being asked if I can be seen in private. I immediately felt like I was in trouble. They explained something to me that my lyme brain understood as they thought I was late and possibly pregnant so I tried to explain that I don't process things well and that I'm not late but that I am 13 days into the cycle. They then explained they understood that and said they couldn't do the test because I couldn't be pregnant. Frustrated I explained that couldn't be for other reasons. They laughed and said thats what they needed to know and for me to put that on the form. Frustrated I wrote it on the form. They had to call the cardiologist to call in this prescription I was supposed to have to lower my heart rate to take this test. As I sat in the room waiting for all this scripture came to mind but then I would get all teary eyed. I tried to pray and I would get all teary eyed. I would think of my girls and I would get all teary eyed. Great! There was nothing I could think of that would help. I just felt desperately alone. And I think it was here that the walls came up and the peace dissolved away.
I have a friend, one of few who has stuck by me through this journey and has not been sifted through the sifter of the illness. Occasionally she writes me a message...its more like a small letter on facebook, and it does my soul so much good. I told her it like a window for me to look out and it gives me a glimpse of what is going on outside the four walls I live in. Her letters do so much to lift my spirits. I know she thinks she is just "rambling" on but I love it. I am just extremely lonely right now. I am beyond dry in adult fellowship, spiritual fellowship. I yearn so badly to be involved in things at church but the body doesn't allow. I'm good to just teach my girls school and get them to their one activity each and I barely do that. I don't cook, clean, or do anything else.
If I could find a black whole to crawl into I would, one where I could just listen to my praise music, and read my bible and talk to God and just hang with Him till this whole Lyme thing was done. I find comfort knowing that God won't get sifted through the sifter of illness as others have. It is painful to watch as friends have fallen away as if unable to handle a long illness. A long illness will sift who your true friends are and it has been painful to see some who I thought I could count on fall through. But my God cannot be sifted. I feel I am hanging on by finger nails hoping we beat this Lyme before all the meds beat the body. Either way, I know God will see me through. I just wish I could do alone in private with Him and not have to see the effects it has on those around me, especially those I live with. I am physically and mentally exhausted. Anything I need, anything I have comes from Him. I have nothing on my own. Survival mode. One day at a time. Hoping for a change
