I finished dosing Friday and it took me longer to recover than usual. I missed most of a beautiful weekend because my body would not cooperate. My fatigue was dictating my life again. I wanted to stay awake and take in some sunshine and enjoy the nice weather. Today, I am finally awake and my body is screaming at me. There’s been a major change in the barometric pressure, a gloomy day with rain in the forecast. I didn’t have to check the forecast though to know rain is coming, my entire spine burns and aches and is sending shooting pains randomly up and down. It’s all a part of my disease.
My shaking is getting worse. I pretty much shake or tremor at all times now. I can usually get some reprieve when I lay down, but I don’t want to spend my life in bed or on the couch. The shaking started back in February and despite medicines to help control it (actually to make it stop) it continues. The meds have helped the violent shaking mostly and now it is almost continuous tremors. It makes life so hard (as if it wasn’t hard enough with all my “side effects” from treatment and the diseases themselves.) I’ve begun to wonder if this is permanent damage done to my nerves by the diseases and treatment and if this is the way things will always be. I try to stay positive and believe that with further treatment and eradication of at least my co-infections the shaking and tremors will stop. Its like being stuck in a continuous herx.
But life goes on. I’m sitting here now and my legs are wiggling like they have worms in them. If I focus hard enough I can get them to tone down to a minor tremor but they never stop and I can only hold them down so long (which isn’t very long at all.) It makes even the smallest of tasks unbelievably difficult. Driving is a nightmare. I can only drive when the shaking is minimal and hope that while I’m out things don’t go from bad to worse. Thank the good Lord for cruise control. Brushing my teeth – well lets hope that I don’t jab my gums or have a spasm and jam the toothbrush down my throat or gums. Standing to wash the dishes, lets hope I don’t drop a dish or my legs shake so badly I can’t even finish. Thankfully, I rarely have to wash dishes anymore because my boyfriend has taken over that task to help me out. Chores around the house? I can only do them on good days. It seems like I’m finally being forced to learn how to let someone help me. My boyfriend has taken on a lot of things because I just can’t do them or can only do them on certain days and/or time.
I have been very emotional lately. I cry when I’m alone and no one can hear me or see the tears roll down my face. I try to bury my head in the pillow to muffle the sounds. I also try to get it out in the morning, after my boyfriend has gotten out of bed and is downstairs making coffee and doing his thing. Sometimes its hard to hide, but I am master at hiding and masking things. Despite my best efforts I haven’t always been able to keep it in and it it’s getting harder and harder to hide, especially now that I have someone living with me. I used to be able to cry alone because I lived alone or if I was out I would force myself to just hold it in until I got home. Little things that would have never bothered me are setting me off now. Jokes that I’m used to and have been dealing with for years send me either to fury or to sadness. I’ve always tried to maintain my sense of humor throughout all of this. Laugh at myself. Laugh at the ignorance. Laugh at all of it because if I stop and take it all too seriously it takes me to a dark place that I don’t want to go again. I’ve been there too many times.
The further into treatment I get the more I discover the depths and all-encompassing effects of my diseases. I look back at how bad I was physically and I have come so far in a way. In another way the symptoms haven’t really ever gone away they have just changed and now I’m more emotional (good and bad, but mostly bad) and life continues to be a struggle. I “look” better than I used to but I don’t “feel” better, just different. Treatment continues to target specific areas at specific times and that alone is enough to drive anyone insane. While Lyme is always being treated it’s a constant and ever-changing of this and that (Bartonella or Babesia or limbic system or side effects and so on.) This monstrous disease and its coinfections feel like they are devouring me alive. I’m taking pill after pill and still seem to be drowning in sea that is Lyme. I keep going because I have to and I believe that even though I may be left with irreparable damage to certain parts of my body and brain, I can and hope to get better than where I am today. I’ve been struggling a lot with that hope lately and being so emotionally overwhelmed most of the time lately is definitely not helping. I just look at my crosses (I have 2 tattooed on me) and another tattoo with “Serenity” “Courage” and “Wisdom” and remind myself to practice what I preach.
I’ve also been thinking lately a lot about my fellow “Lymies” knowing how they are suffering and hoping that they can hold on and fight the fight as well. I recently learned of a Facebook/Instagram friend who died from complications of Lyme. It was heartbreaking as I have been following her for quite sometime. I gained strength from her even in her most weakened state. Sadly, I know that “Lyme” will most likely not be listed as a cause of death because as we all have heard “people don’t die from Lyme.” We’ve heard that line so many times and yet we all know that thousands are dying from this disease. Today I will count my blessings as I remember this. I will remember her fighting spirit, mourn for her, feel compassion for her family including her children, and I will persevere. I hope that her death may not be in vain. Maybe, just maybe and hopefully, the right “person” or ” people” will hear of her passing and it will cause some change, some uproar, someone to start something. We can’t keep losing one another to this. Reach out to each other, we are our best resources.