Over the last few days it has become increasingly harder to communicate. Finding the right words to effectively interpret my thoughts and ideas into words and sentences... just ask anyone who has talked to me yesterday or today! So anyway, I guess I'm entering that phase... Ugh. Doesn't this disease know not to mess with a Gemini, a natural communicator! I need to communicate, dammit! This is frustrating beyond belief!
Something is wrong when it takes you a half hour to do a Facebook post! (Almost 2 years ago, at my worst with this symptom, it was 2 hours!) All I was trying to do was write a few lines! Once typed, the words didn't look right. The spelling looks wrong (but it wasn't), the context seemed wrong, the sentence doesn't make sense, am I conveying the right message, etc. WTF! Thank god, there's nothing wrong with me... it's just the Lyme!
I forgot to mention about how even though I may have just spent an exorbitant amount of time attempting to do a FB post, the possibility that I would just get to a point of extreme frustration and give up is highly likely, in excess of 80%. It may appear to others that I don't care about them enough to keep in touch, but that is far from the case. I want to be more social, I just don't have that ability all the time!
Let me also add that I'll have periods where this particular malady is completely reversed. This is why people who have seen me during both extremes can become confused, and sometimes, quite judgemental. They just don't understand. It can be so ironic, because in order to enlighten someone in this area, you need to have adept conversational skills.
Today, anyway, I'm good as long as you're not trying to talk to me. I seem to be handling typing this monologue okay. One thing I must add is that only I know how long it is really taking me to think of the things I want to say. Let's just say that it's taking a lot longer than it should be. If this was a face-to-face conversation, every person I know would just give up after awhile. First though, they would be either completely lost, pretend to be listening, or get distracted by something else. It hurts. It hurts, and I have no control over it.
I've been also known to say something the wrong way and someone else is hurt or offended. So, then it is my fault then. This is when I demand telepathy! But who knows? It's very possible that my mind might seem like a mess of tangled up thoughts, unable to be retrieved and deciphered.
I did not want to feel antisocial today. It has been more of a forced antisocial day. I have lots of stuff I want to say to many people, but it just wasn't working well conveying those things across. So I just found something else to do. Good thing I've had my beloved music to enjoy again. I can't stress enough how delighted I am to not be repulsed by any kind of music! It's so wonderful to not think of it as noise! It's been like I've reconnected with a long-lost friend... I haven't had my headphones out of my ears during much of the week!
So, while one symptom (or several symptoms) acts up, others go away (or at least subside). That's how it happens. When the severity of such symptoms diminishes over time, you know that you're getting better! Which, I am!... it's just painfully slow. And hard.
Thursday, July 28, 2011
Tuesday, July 26, 2011
...continued
Sometimes I feel detrimental to my own health. Self-sabotage. What the hell is up with that? Why do I feel such a strong urge to do things that are bad for me? Now, I feel that, more than any other time in my life! Like, out of no where, I feel the most intense urges to eat foods that I shouldn't, stay up too late, push myself too hard, drink when I shouldn't be drinking at all, etc... What is up with that?
Lately, some new medicines have been contributing to my lack of appetite, and/or food intolerance. So, in other words, it has been even harder for me to get my nutritional requirements. Lately, I plainly just hate food. Eating has been a job for me for over a year now, but lately it has become a dirty job! Believe me when I say how nothing sounds good! It's quite interesting how you can feel hungry, but be unable to eat. Perplexing...
So, to summarize: I cannot sleep (although I'm very tired), I cannot eat, I am in pain, I am weak, I have an ultra-short attention span, memory loss, cognitive difficulties, disturbing mood & personality changes/swings, my skin has constant burning sensations, I have chills/fever + day/night sweats, extreme photo-sensitivity, etc, etc, etc....
Most of the time, I feel too awake to sleep any more, but much too tired to wake up and do anything. Sometimes, just sitting up in a chair is too hard. Or, even just moving my arms. Usually, my upper body is way weaker than my lower body. And, believe me, this has nothing to do with deconditioning! I don't care what they say, but Lyme disease is so much different than any other conditions. Because of the life-cycle of the borrelia bacteria (the Lyme bacteria), while I'm in the phases where the bacteria is dormant, I will experience periods of almost complete reversal! (It's quite another case when the bacteria is active and multiplying...)
Also, in the last few years I have become ultra-sensitive to pretty much everything; sights, sounds, smells, touch,- you name it! My nervous system seems to be on fire all the time, even though I've been taking medicine to help diminish that very thing. So, basically, live has become quite uncomfortable.
Maybe it's because I've been living with many of these horrible symptoms that
I've suddenly become so defiant about taking healthful/beneficial measures in effort to combat my disease. I guess it sure can be hard to keep up with a program that you feel little or no benefit. For instance, I really cannot tell the difference if I'm taking my supplements or if I am not. Besides, taking all the supplements that are recommended for a Lyme patient, and at the correct times and dosages, can be a full-time job in it of itself. Trust me, it's A LOT of work!
I just know that me and restrictions do not mix well. I have a tendency toward defiance. Even more so if the benefit does not seem to justify the means. Yes, I know that "they" might say that certain things or behaviors will be either beneficial or detrimental to a Lyme patients health, but... do "they" really fully ever understand the physiology that is going on inside their Lyme patients head? Why It can be so difficult, if not impossible for their patients to follow said regimens? Speaking from personal experience, I know. Depending on where you are in the Lyme cycle, that pretty much determines whether or not you have the capacity or the wherewithal to stick with your program.
Lately, some new medicines have been contributing to my lack of appetite, and/or food intolerance. So, in other words, it has been even harder for me to get my nutritional requirements. Lately, I plainly just hate food. Eating has been a job for me for over a year now, but lately it has become a dirty job! Believe me when I say how nothing sounds good! It's quite interesting how you can feel hungry, but be unable to eat. Perplexing...
So, to summarize: I cannot sleep (although I'm very tired), I cannot eat, I am in pain, I am weak, I have an ultra-short attention span, memory loss, cognitive difficulties, disturbing mood & personality changes/swings, my skin has constant burning sensations, I have chills/fever + day/night sweats, extreme photo-sensitivity, etc, etc, etc....
Most of the time, I feel too awake to sleep any more, but much too tired to wake up and do anything. Sometimes, just sitting up in a chair is too hard. Or, even just moving my arms. Usually, my upper body is way weaker than my lower body. And, believe me, this has nothing to do with deconditioning! I don't care what they say, but Lyme disease is so much different than any other conditions. Because of the life-cycle of the borrelia bacteria (the Lyme bacteria), while I'm in the phases where the bacteria is dormant, I will experience periods of almost complete reversal! (It's quite another case when the bacteria is active and multiplying...)
Also, in the last few years I have become ultra-sensitive to pretty much everything; sights, sounds, smells, touch,- you name it! My nervous system seems to be on fire all the time, even though I've been taking medicine to help diminish that very thing. So, basically, live has become quite uncomfortable.
Maybe it's because I've been living with many of these horrible symptoms that
I've suddenly become so defiant about taking healthful/beneficial measures in effort to combat my disease. I guess it sure can be hard to keep up with a program that you feel little or no benefit. For instance, I really cannot tell the difference if I'm taking my supplements or if I am not. Besides, taking all the supplements that are recommended for a Lyme patient, and at the correct times and dosages, can be a full-time job in it of itself. Trust me, it's A LOT of work!
I just know that me and restrictions do not mix well. I have a tendency toward defiance. Even more so if the benefit does not seem to justify the means. Yes, I know that "they" might say that certain things or behaviors will be either beneficial or detrimental to a Lyme patients health, but... do "they" really fully ever understand the physiology that is going on inside their Lyme patients head? Why It can be so difficult, if not impossible for their patients to follow said regimens? Speaking from personal experience, I know. Depending on where you are in the Lyme cycle, that pretty much determines whether or not you have the capacity or the wherewithal to stick with your program.
I feel so alone
I feel so empty. So alone. I guess that's not out of the ordinary for someone with a chronic illness. Extreme isolation sort of happens. It's hard to relate to others. It's not like I want to sit here and feel sorry for myself or anything, but... I kind of guess that's what I need right now. I need a bitch session.
Here goes it... For one, my pain and anxiety has reached a new high. Anxiety is a symptom that I haven't had in quite a long time. Oh, what I wouldn't do for some Valium or something!
Another thing... how can you feel so anti-social, but at the same time crave it? Maybe it's that I've lost the ability or confidence to relate to the outside world, but I still feel a huge void, a desire to connect, to be accepted and completely understood.
How is it that I want to talk to someone, but I'm not sure about what I want to talk about? I know in my heart that I need to get something off of my chest, but am not sure about what that may be. Plus, dealing with my lately inability to retrieve the right words just adds to my stress and overall frustration. It's almost impossible for someone that has never personally dealt with chronic Lyme disease & it's co-infections to even try to grasp this hell. I am a prisoner in my own body, in my mind. This is why I pray for death to come soon, since this is HELL. Sometimes, I do not know how I will go on.
Somehow, I seem to persevere. Sometimes, I feel that I'm just prolonging the inevitable, which is a slow, painful, and arduous death. I feel like I am being punished. God, how I would only just like to know my crime! Please understand that I cannot live too much longer like this!
One thing that I am very thankful for is the ability to at least enjoy my music! OMG, for like, over 6 months, even my favorite music sounded like noise to me! Coming from someone who gets through life with music, not being able to do that was unbelievably painful! Music is how I cope. So, my life sucks, but at least I can try to get through it with music.
Lately, I've been healing with tunes from my all-time favorite group, Muse. God, how I am so very grateful for being introduced to them a while back... They seem to have songs for whatever mood I may be in.
I am also feeling sad from my beloved grandpa's passing, and my (also beloved)cousin's Army deployment to Kuwait. I'll admit that I am not someone who knows how to successfully deal with emotions, so... maybe that is why I am so screwed up!
Even before I was sick, I lived a life of profound emptiness and pain. Honestly, I cannot wait till it's over. I'm ashamed to say, but the pleasures in life have not mitigated the pains and sorrows.
Yes, I know that one's happiness is within themselves, but all too often that very concept seems way out of reach. Sometimes, just when you think you have it, it is gone. A delusion in it of itself.
I keep on asking myself what I am doing this for. Yes, maybe it is because I do not want to let my family down. Maybe, in my heart of hearts I really do believe that I deserve a life of contentment and true happiness. Gosh... I wonder what that would be like..
For starters, a life without constant pain would be good. To have my personality and complete neurological function restored would be more than okay. Plainly stated, I would just want to have my life back. I just would like to have some happiness, some pure bliss. Yes, I know that bliss is within myself, but if I could just have my mind back, maybe that goal would be attainable!
Here goes it... For one, my pain and anxiety has reached a new high. Anxiety is a symptom that I haven't had in quite a long time. Oh, what I wouldn't do for some Valium or something!
Another thing... how can you feel so anti-social, but at the same time crave it? Maybe it's that I've lost the ability or confidence to relate to the outside world, but I still feel a huge void, a desire to connect, to be accepted and completely understood.
How is it that I want to talk to someone, but I'm not sure about what I want to talk about? I know in my heart that I need to get something off of my chest, but am not sure about what that may be. Plus, dealing with my lately inability to retrieve the right words just adds to my stress and overall frustration. It's almost impossible for someone that has never personally dealt with chronic Lyme disease & it's co-infections to even try to grasp this hell. I am a prisoner in my own body, in my mind. This is why I pray for death to come soon, since this is HELL. Sometimes, I do not know how I will go on.
Somehow, I seem to persevere. Sometimes, I feel that I'm just prolonging the inevitable, which is a slow, painful, and arduous death. I feel like I am being punished. God, how I would only just like to know my crime! Please understand that I cannot live too much longer like this!
One thing that I am very thankful for is the ability to at least enjoy my music! OMG, for like, over 6 months, even my favorite music sounded like noise to me! Coming from someone who gets through life with music, not being able to do that was unbelievably painful! Music is how I cope. So, my life sucks, but at least I can try to get through it with music.
Lately, I've been healing with tunes from my all-time favorite group, Muse. God, how I am so very grateful for being introduced to them a while back... They seem to have songs for whatever mood I may be in.
I am also feeling sad from my beloved grandpa's passing, and my (also beloved)cousin's Army deployment to Kuwait. I'll admit that I am not someone who knows how to successfully deal with emotions, so... maybe that is why I am so screwed up!
Even before I was sick, I lived a life of profound emptiness and pain. Honestly, I cannot wait till it's over. I'm ashamed to say, but the pleasures in life have not mitigated the pains and sorrows.
Yes, I know that one's happiness is within themselves, but all too often that very concept seems way out of reach. Sometimes, just when you think you have it, it is gone. A delusion in it of itself.
I keep on asking myself what I am doing this for. Yes, maybe it is because I do not want to let my family down. Maybe, in my heart of hearts I really do believe that I deserve a life of contentment and true happiness. Gosh... I wonder what that would be like..
For starters, a life without constant pain would be good. To have my personality and complete neurological function restored would be more than okay. Plainly stated, I would just want to have my life back. I just would like to have some happiness, some pure bliss. Yes, I know that bliss is within myself, but if I could just have my mind back, maybe that goal would be attainable!
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