One thing that is hard to cope with is the cyclical comings-and-goings of symptoms. They seem to come in groups. It's a trade off. For example, either it's profound fatigue with improved concentration (that's when I do most of my reading) or it's increased energy with a complete scatter-brain. Sometimes, I seem to have every negative symptom together. That's the absolute worst! I can't accurately describe how profoundly awful it is to anyone who has not experienced it themselves. It's just impossible to imagine. Unfortunately, stuff like that is basically par for the course for someone with chronic, late-stage Lyme disease plus any of the other numerous co-infections that come with it.
As it is right now, I am not 100% certain what co-infections I have. Each one has its own separate test. Of course, insurance won't cover this. Already, we have paid out-of-pocket for so many other things not covered by insurance that the running total is somewhere around $5,000. My Lyme specialist has believes that according to my symptoms, it is very likely that along with the Borrelia burgdorferi bacteria (classic Lyme) that I also have Babesiosis, Bartonella, and possibly Ehrlichiosis and Tularemia.
As if just have plain old Lyme disease wasn't bad enough! Each co-infection added basically compounds the severity of the disease, like compounding interest. Yikes! This totally explains the crazy-long list of symptoms I've been experiencing and why this has been so debilitating for me.
I seemed to kind of go off on a tangent about co-infections. My intention was to vent. The last 2-3 days have been hard. Hard compared to the preceding week of relapse, of sorts. It was so unbelievably awesome to feel good for a little while! That was the best I'd felt in months! Every time I have a good period of time, I start believing that the worst is over. All too often I am bitterly disappointed. I know that the important thing is to just live in the moment. Take it as it comes. Don't look into the future. Just live for today. Tomorrow will be different, better.
Having the proper mind-set is crucial. Anyone living with a chronic illness understands this. Believe me, battling with my mind is a daily battle. Extremely draining sometimes, but with practice it gets easier.
Yesterday and today I woke up exhausted, but unable to sleep any more. I've been experiencing so much pain lately. Nerve pain, back pain, neck pain, muscle pain, joint pain... When my pain is bad like this, it's hard to focus on anything other than the pain. I try and try to get my body in the most comfortable position, but can't find one. Unbelievably frustrating! Sometimes, I'm so angry because of the helplessness that this brings. Sadness, some depression too. I try to find healthy outlets for these emotions. I now understand the danger of bottled-up emotions has on the mind and body. I don't want that.
Another reason why I really hate this is that when you're really sick for a long time, it takes quite a toll, not only on you, but also those who you're around. Everybody is affected. Knowing this, and not wanting to be more of a burden than I already am, I try not to complain much. Sometimes, though, I just need someone to try to understand what I'm going through. Most people with Lyme tend to appear fine, healthy, on the outside. This is extremely deceiving! We are just suffering silently. Only I know how severely I've lost functioning in the various areas. I remember what I used to feel like when I was healthy.
I may not be able to remember what I just read, or the topic of conversation I had with my sister on the phone the last time I talked to her, but I can remember vividly the ways I've felt before. I can still remember the types of tasks I used to do with ease. When you suddenly come to the realization that there is one thing after another that you used to do all the time without a problem and now it is impossible for you, it causes a lot of shame, frustration, anger, sadness. It takes a long time to come to terms with it all. Believe me, I'm still working on that acceptance part.
I've been really struggling with 'word finding' lately. It's been very difficult to just have a normal conversation. I just can't seem to put into words the thoughts I'm trying to express. When I'm typing, like I am now, it's a bit easier for me to do since I can take as long as I need to figure out the best words, then type them out. Then, when those words don't look or sound right, I can just delete and start over. Only I know exactly how long it is taking. When you're having a face-to-face conversation, the other person is waiting for you to talk. People aren't very patient. They don't want to wait all day for you're reply to whatever they asked you. This pressure just seems to make things worse for me. Therefore, I try to avoid social situations whenever possible and to try to only be around supportive and understanding people.
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