In the last couple days, I feel like that progress I was making regressed. I feel like a different person again. Ugh! I wasn't anticipating this. I had been coping pretty well until just recently. Today, I woke up feeling like overnight I slipped into a deep depression. I can't do this with the mind-set I have currently. In fact, I simply cannot function at all.
My PICC line has been just driving me nuts! I couldn't sleep well last night since my skin around it was itching so bad. It still is. I'm afraid one night that I'll be itching it in my sleep and tear through the sterile dressing and compromise the line, or start to yank it out. God, I hope that does not happen. It's been 14 1/2 weeks now that I've had that line and the IV antibiotics. I better start getting a handle on this better because I've got a long, long way to go. Things will probably not get any easier either. At least, I know they are helping. I just wish this process could be a lot faster. It's hard for anyone not familiar with treating someone that has had Lyme for many years to really grasp the process. It's more intense and lengthy than the treatment for any other disease I can think of.
I'm also not liking the cold weather. I stay at my mom's house, and it's a lot chillier here than I prefer. I do not pay the utilities here, so I can't really complain. However, today I feel like I should be allowed to. Maybe I just need a moment to feel sorry for myself. A moment. Then I can maybe move on with a better attitude. I'm so glad this blog provides a safe place for me to talk about my feelings and I can just get whatever may be bothering me out, so I can spare my loved ones. I do not want to be any more than a burden on my family than I already have been. It's been hard on all of us.
I've been feeling very anti-social lately, too. It's been well over a week since I even did a Facebook post. I just haven't even known what to say. I feel like I can't relate to anyone and I don't how to even start. I don't feel like anyone can relate to me either. No one really understands, and most people are way too wrapped up in their own lives to care.
I'm starting to feel really overwhelmed thinking about our family's plans for Christmas and New Year's. I love my family so much and love when we all all together! We always have such a good time, no matter what we're doing. I just wish my situation was different. I just can't do all the things I used to do right now. I'm sort of restricted now. For instance, I get very tired easily. The most basic aspects of daily life exhaust me. Also, I go through phases where I have a difficult time talking. This is extremely frustrating for me since usually, I've always been such a out-going, talkative person. Also, it's just hard to travel with all the medicines and supplements I have to take, all at specific times throughout the day. I have diet restrictions too. For instance, I'm not supposed to have even a glass of wine. This will be hard for me during the holidays. I haven't been a big drinker or anything, but it's customary for us all to have a drink or two when we're together. It's like the only time I ever drink. I hate feeling deprived. I will just need to think about how much more sick it could make me, or how my liver just cannot handle it.
I sort of have a routine here and it stresses me out to have to change it right now. I have a set up in the bathtub so I can bathe, but I still need help washing my hair. It's still a lot of work. Because I can't get my right upper arm wet (where my PICC line is), and it is extremely difficult not to, even with the silly plastic gloves they give me- this creates quite an ordeal. So, figuring how to bathe while traveling and visiting relatives is my next problem. Like I said, even the most basic aspects of one's daily life are not so basic for me. Everything is so much harder.
Right now, I just want to stay in my comfy, cotton clothing. I do not want to dress up. I want to stay in my fleece and slippers. I do not feel like putting any make-up on or styling my hair. I don't want to have to look into a mirror either. No way do I want to be in any pictures! I would prefer not to have a permanent record for how awful I look, since I'll always remember how this feels.
My doctor recently informed me about why I MUST avoid gluten. Apparently, gluten is not only a neuro-toxin for Lyme patients, but also it interferes with certain neurotransmitters. So, if I want to feel emotionally well and not feel depressed or apathetic, I have to completely avoid gluten. Do you understand how difficult that is? Gluten is everywhere! It's not just in breads or cereals, it's hidden in many inconspicuous places, under tons of different ingredients.
Sugar is really bad, too. That's a problem. I love sugar! It's also going to be everywhere! Deprivation. That's what I'm foreseeing right now. If I can get over that feeling, then I'll be able to see all the wonderful other things that I'll be able to enjoy. It's easy for the clouds of negativity to envelop the positivity, but once that positivity starts to break through, it takes over. Positivity is very contagious, thankfully.
Okay, I think I'm done for now. I feel a little better, I think.
Tuesday, November 16, 2010
Saturday, November 13, 2010
Frustration
It's frustrating to have any sort of insomnia. Especially when the insomnia is related to Lyme disease, since the type of insomnia characterized consists of not only the inability to sleep when tired, but the inability to find a comfortable enough position to sleep in. When just having your pajamas and sheets touching your skin irritates the hell out of you, that's kind of a problem. I feel like I'm going mad sometimes since I feel like things are crawling under my skin. My nerves and nervous system has been going crazy! Going through the kinds of symptoms that I have endured will most definitely push anyone to their limits! I guess it's a good thing that my symptoms are always coming and going. At least I get breaks from some of the worst ones.
Lately, I've been having such a hard time focusing, concentrating on anything. Even on things I really enjoy. This is extremely disconcerting for me. When you can't seem to do anything, favorite things included, what do you have in life? Just more time to realize the unfortunate situation I'm in, that's all. Mind over matter, it's a daily struggle.
I'm just trying to finish this book I borrowed. I love it! I've really enjoyed it, but it's just taking me forever to finish it. I've just had a very difficult time reading during the last 2-3 weeks. The way my symptoms cycle, I should start to regain my reading ability very soon. Reading is one of my passions. I used to mainly prefer non-fiction, but during this last year I've discovered how great it is to get lost in a great story. Fiction has proved to be a better distraction for me during this point of my life. Since my ability to learn new information has been severely affected, I get extremely discouraged when I can't remember information I used to know. Humbling.
Why do I always have to be so tired? A lot of the time, I'm just to weak or weary to do anything I want to do. Even holding a book can be challenging. Holding my head up. Typing. Anything. You name it, a lot of the time I just can't get the strength to do it. Sometimes I just wish I could fall asleep till I was well again. Or just fall asleep and never wake up in this body again. I feel a lot that this body of mine has failed me miserably. I feel cheated. Cheated out of living. I've been merely existing for quite a while now and I'm sick of it! Maybe this is why I'm still fighting. I suppose, I could have given up long ago. But I haven't. I don't know why sometime, to be completely honest. There's got to be something so fabulous coming in my future that I've made sure I'd be there for it. That's possible, I guess. I can hope at least.
Lately, I've been having such a hard time focusing, concentrating on anything. Even on things I really enjoy. This is extremely disconcerting for me. When you can't seem to do anything, favorite things included, what do you have in life? Just more time to realize the unfortunate situation I'm in, that's all. Mind over matter, it's a daily struggle.
I'm just trying to finish this book I borrowed. I love it! I've really enjoyed it, but it's just taking me forever to finish it. I've just had a very difficult time reading during the last 2-3 weeks. The way my symptoms cycle, I should start to regain my reading ability very soon. Reading is one of my passions. I used to mainly prefer non-fiction, but during this last year I've discovered how great it is to get lost in a great story. Fiction has proved to be a better distraction for me during this point of my life. Since my ability to learn new information has been severely affected, I get extremely discouraged when I can't remember information I used to know. Humbling.
Why do I always have to be so tired? A lot of the time, I'm just to weak or weary to do anything I want to do. Even holding a book can be challenging. Holding my head up. Typing. Anything. You name it, a lot of the time I just can't get the strength to do it. Sometimes I just wish I could fall asleep till I was well again. Or just fall asleep and never wake up in this body again. I feel a lot that this body of mine has failed me miserably. I feel cheated. Cheated out of living. I've been merely existing for quite a while now and I'm sick of it! Maybe this is why I'm still fighting. I suppose, I could have given up long ago. But I haven't. I don't know why sometime, to be completely honest. There's got to be something so fabulous coming in my future that I've made sure I'd be there for it. That's possible, I guess. I can hope at least.
Wednesday, November 10, 2010
One of the most frustrating things to deal with is being unable to sleep when you are clearly exhausted. And, I know I need to sleep so my body can recover! Ugh! A while ago, I had the opposite problem. For almost 2 years, I couldn't stop sleeping! I just couldn't stay awake! What a contradiction. Hopefully someday I'll find a compromise that I can live with. Can you believe that I used to sleep straight through a whole weekend? (minus bathroom trips, glasses of water) Crazy. My record is 37 1/2 hours. WTF. Worse yet, at that time I had no definitive diagnosis to fully account for what was wrong with me. It was excruciating. Deplorable. At least now I have a sound explanation for all my bizarre behaviors, despite how daunting.
Most nights nowadays, I just can't seem to get 'comfortable.' Translation: burning sensations throughout my skin/body, musco/skeletal pain, itchy skin (with 'creepy-crawly' sensations all over), muscle twitching, peripheral neuropathy, etc. It is literally hell. HELL! At least eventually, I do fall asleep. I went through a month or two where nothing seemed to be able to knock me out. I hope I NEVER EVER have to go through that again! I took 10 Benadryl one night. Slept 30 min. Then my dr gave me the highest dose they make of Ambien. The most I could sleep then was only 4 hours. WTF.
I can't stress how good it feels to finally be in a position where it really feels like the worst is over! Looking back, it's hard to fully grasp what a journey this has been so far. I do not ponder what the future may bring. I just can't look that far ahead at this time. Too much. Honestly, I really don't care right now. All I do care about right now is living in the moment. Living authentically. Being truly present. I learned my lesson earlier in my life when I tried to plan out and control my future... there's a quote that says, "God laughs when men make plans."
That's another thing. Spirituality has been crucial for me. Basically, remembering that I am an eternal, spiritual being, here on Earth having a human experience, not just a human on Earth having a spiritual experience. What a breakthrough! When we understand that we are not our bodies, that they are just our 'vehicles' for existing here on Earth, a remarkable dimension is added to our lives. A series of compounding effects takes place. Anyway, for me the realization that I have total control of how I experience things has had a profound impact. I see the correlation between negative energies, thoughts, emotions, and setbacks, strife. I decided that I needed to take control of my miserable situation and change the way I saw it, therefore allowing me to become aware of the gifts this situation could bring. I began to realize all the priceless things I had gained, not at how miserable I was over all that was lost. Thinking this way takes some practice at first, but it is definitely possible to switch over negative thinking. Love and positivity is way too infecting :)
Most nights nowadays, I just can't seem to get 'comfortable.' Translation: burning sensations throughout my skin/body, musco/skeletal pain, itchy skin (with 'creepy-crawly' sensations all over), muscle twitching, peripheral neuropathy, etc. It is literally hell. HELL! At least eventually, I do fall asleep. I went through a month or two where nothing seemed to be able to knock me out. I hope I NEVER EVER have to go through that again! I took 10 Benadryl one night. Slept 30 min. Then my dr gave me the highest dose they make of Ambien. The most I could sleep then was only 4 hours. WTF.
I can't stress how good it feels to finally be in a position where it really feels like the worst is over! Looking back, it's hard to fully grasp what a journey this has been so far. I do not ponder what the future may bring. I just can't look that far ahead at this time. Too much. Honestly, I really don't care right now. All I do care about right now is living in the moment. Living authentically. Being truly present. I learned my lesson earlier in my life when I tried to plan out and control my future... there's a quote that says, "God laughs when men make plans."
That's another thing. Spirituality has been crucial for me. Basically, remembering that I am an eternal, spiritual being, here on Earth having a human experience, not just a human on Earth having a spiritual experience. What a breakthrough! When we understand that we are not our bodies, that they are just our 'vehicles' for existing here on Earth, a remarkable dimension is added to our lives. A series of compounding effects takes place. Anyway, for me the realization that I have total control of how I experience things has had a profound impact. I see the correlation between negative energies, thoughts, emotions, and setbacks, strife. I decided that I needed to take control of my miserable situation and change the way I saw it, therefore allowing me to become aware of the gifts this situation could bring. I began to realize all the priceless things I had gained, not at how miserable I was over all that was lost. Thinking this way takes some practice at first, but it is definitely possible to switch over negative thinking. Love and positivity is way too infecting :)
Every day is a challenge... but only if I let it be
Even if I happen to wake up in a positive mood, sometimes that diminishes when I get out of bed and soon realize that I don't have enough energy to do anything. Then I go back to bed and realize that I'm not really tired. Maybe my body is exhausted, but my mind is going and going. Ugh! Don't get me wrong, it's great that my mind is 'on', because I've had it seem to shut down for long periods of time. Too bad my hands are hurting so much, typing seems to be pretty good therapy for me. I can't ever seem to have a good thing without some bad thing. Well, at least I'm sort of balanced I guess. Whatever.
I truly believe that we are all creators of our own existences, of our experiences here on Earth. So, I do my best to consciously remember this every day. The quality of our thoughts and our intentions have a direct impact on what happens in our lives. I also believe that everything that happens for a reason. People we meet, situations that arise- there is a greater meaning in everything. Someone may be there to help me one time, another I can help someone else on their journey. I do not believe in coincidences. Syncronicity.
It's hard for many people to find meaning in tragedies. Why do bad things happen to good people? In today's society, with the current value systems, organized religions, meaningless relationships, etc., it is virtually impossible for most people to understand the big picture. The BIG picture, as in the ability to ascertain why. Why we are here, how we got here. I hate to say it, but most of science as we understand it today is wrong. So very wrong.
Not everything though. There is so much more to the Universe than this world of matter. From our vantage point, we see billions and billions of light years, galaxies, an infinite number of stars, stuff that's hard for us to comprehend. With modern instruments, we can see into other wavelengths on the electromagnetic spectrum, from radio waves to gamma rays. Still, this is just a small little slice of the actual universe! Our senses cannot perceive the other dimensions that are co-existing among us. What's amazing is that what we can see and what we can't see is constantly impacting each other. We are energy. Consciousness. We have our bodies, which are temporary vessels created so we can experience whatever we came here to experience.
I believe that the Earth is one of many schools out there in the universe. Each school is different. Different types of experiences. We have lived these other kinds of existences in many different places before. We are eternal. Our bodies, our vessels may change, but our consciousness, our Mind remains. Depending our path, our evolution, some of us chose to be here on Earth at this time. Some did not have a choice, they had specific lessons, Karma, to work out. This explains the vast difference between the good people and the so-called evil people. I do not really believe in evil. Just souls that are profoundly misled. Misguided.
When I started to get very sick, it was hard for me to see outside of it. I was consumed by my unrelenting physical symptoms. After the months, the years were going by and I was gradually losing everything, I started to search for some meaning to it all. I did an enormous amount of reading and reflecting. I now understand that all those things that I lost in my old life were the distractions that were blinding me to the world that I was missing. They had to disappear in order for me to see the light.
I now understand that my illness has been a wonderful gift. It has been a catalyst to greater wisdom, understanding, peace. It brought me closer to my family who in my old life I had been growing apart. I realize the high value relationships have. They're everything! How we relate to one another coincides with how the world appears to us. When we have mutually fulfilling relationships, the world is a much better place. The focus has to be more about the 'we' than the 'me.' That's not hard when we realize that we are all energies feeding off each other. Good perpetuates more good. So does bad. Being aware of this is key. Key to a greater understanding.
Awareness is easier to have when the outside 'noise' is turned off. Our society is constantly bombarded by useless information, toxicity. We are told that they key to happiness is stuff. Material goods. Trust me, it is not. All around us we are bombarded with images of 'happiness' in form the latest fashion trends, the newest techno-gadgets, it's all around us and just won't stop. We feel this need to compete. To be the first one with the latest and best stuff. This is sad. The time of the year where this is most evident is approaching. Christmas. Over time, this favorite holiday has become a manufactured holiday for retailers. It's all about money. Most things are lately.
My illness has let me take a giant leap backwards and offer me a chance to reflect. To take inventory of my life, what things led me to where I am today? How could I have acted differently in the past? More importantly, what have I learned from these experiences? How will I proceed in the rest of my life from this moment forward? What things do I value now? What things can I do without?
It is easy to get caught up in the pain and suffering. If you let it, it will consume you. I try to remember not to take life so seriously anymore. This life is definitely not all there is! All of us are here just temporarily, we will come and go many times but eventually we will all meet up again, with our Creator. Think of life here on Earth as a play. We all act out our parts. Time is only an illusion. We are not our bodies, we are our minds.
Our minds are powerful beyond belief. We have been led to believe not. Never forget that we have the power to create our life, our experience. It's all about perception. It can be positive, with love, or negative with fear. We were given free will, never forget. We can't control other people's attitudes, but we can show them the way by leading a good example. They'll all catch on, in time.
I truly believe that we are all creators of our own existences, of our experiences here on Earth. So, I do my best to consciously remember this every day. The quality of our thoughts and our intentions have a direct impact on what happens in our lives. I also believe that everything that happens for a reason. People we meet, situations that arise- there is a greater meaning in everything. Someone may be there to help me one time, another I can help someone else on their journey. I do not believe in coincidences. Syncronicity.
It's hard for many people to find meaning in tragedies. Why do bad things happen to good people? In today's society, with the current value systems, organized religions, meaningless relationships, etc., it is virtually impossible for most people to understand the big picture. The BIG picture, as in the ability to ascertain why. Why we are here, how we got here. I hate to say it, but most of science as we understand it today is wrong. So very wrong.
Not everything though. There is so much more to the Universe than this world of matter. From our vantage point, we see billions and billions of light years, galaxies, an infinite number of stars, stuff that's hard for us to comprehend. With modern instruments, we can see into other wavelengths on the electromagnetic spectrum, from radio waves to gamma rays. Still, this is just a small little slice of the actual universe! Our senses cannot perceive the other dimensions that are co-existing among us. What's amazing is that what we can see and what we can't see is constantly impacting each other. We are energy. Consciousness. We have our bodies, which are temporary vessels created so we can experience whatever we came here to experience.
I believe that the Earth is one of many schools out there in the universe. Each school is different. Different types of experiences. We have lived these other kinds of existences in many different places before. We are eternal. Our bodies, our vessels may change, but our consciousness, our Mind remains. Depending our path, our evolution, some of us chose to be here on Earth at this time. Some did not have a choice, they had specific lessons, Karma, to work out. This explains the vast difference between the good people and the so-called evil people. I do not really believe in evil. Just souls that are profoundly misled. Misguided.
When I started to get very sick, it was hard for me to see outside of it. I was consumed by my unrelenting physical symptoms. After the months, the years were going by and I was gradually losing everything, I started to search for some meaning to it all. I did an enormous amount of reading and reflecting. I now understand that all those things that I lost in my old life were the distractions that were blinding me to the world that I was missing. They had to disappear in order for me to see the light.
I now understand that my illness has been a wonderful gift. It has been a catalyst to greater wisdom, understanding, peace. It brought me closer to my family who in my old life I had been growing apart. I realize the high value relationships have. They're everything! How we relate to one another coincides with how the world appears to us. When we have mutually fulfilling relationships, the world is a much better place. The focus has to be more about the 'we' than the 'me.' That's not hard when we realize that we are all energies feeding off each other. Good perpetuates more good. So does bad. Being aware of this is key. Key to a greater understanding.
Awareness is easier to have when the outside 'noise' is turned off. Our society is constantly bombarded by useless information, toxicity. We are told that they key to happiness is stuff. Material goods. Trust me, it is not. All around us we are bombarded with images of 'happiness' in form the latest fashion trends, the newest techno-gadgets, it's all around us and just won't stop. We feel this need to compete. To be the first one with the latest and best stuff. This is sad. The time of the year where this is most evident is approaching. Christmas. Over time, this favorite holiday has become a manufactured holiday for retailers. It's all about money. Most things are lately.
My illness has let me take a giant leap backwards and offer me a chance to reflect. To take inventory of my life, what things led me to where I am today? How could I have acted differently in the past? More importantly, what have I learned from these experiences? How will I proceed in the rest of my life from this moment forward? What things do I value now? What things can I do without?
It is easy to get caught up in the pain and suffering. If you let it, it will consume you. I try to remember not to take life so seriously anymore. This life is definitely not all there is! All of us are here just temporarily, we will come and go many times but eventually we will all meet up again, with our Creator. Think of life here on Earth as a play. We all act out our parts. Time is only an illusion. We are not our bodies, we are our minds.
Our minds are powerful beyond belief. We have been led to believe not. Never forget that we have the power to create our life, our experience. It's all about perception. It can be positive, with love, or negative with fear. We were given free will, never forget. We can't control other people's attitudes, but we can show them the way by leading a good example. They'll all catch on, in time.
Tuesday, November 9, 2010
All too often, I just need to vent
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.
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.
Friday, November 5, 2010
My Intentions
My whole goal of starting this blog was to document this whole experience, hoping to help others. The irony is that for most of the time, people with chronic Lyme are too sick to maintain a blog. The majority of the last several months, I have been either too weak to hold my head up, or even to sit up-right. Or maybe my joints & bones hurt so much that it's just too painful to type. Then there's the times where I struggle to form sentences, even thoughts. I laugh now, remembering all the times when it took me a few hours to post a status on Facebook. Wow. But that's what it's like. And, there's millions of other "Lymies" out there going through the same thing!
In an effort to remain truthful, real, I will try to be as candid as possible. There is an extreme amount of shame that envelops one's experience with Lyme. The bizarre, complex, ubiquitous collection of symptoms (and may I add, quite extensive) would make anyone feel crazy, if not damaged and worthless, to say the very least... I have found comfort in not only finding caring, compassionate doctors (Lyme-Literate, of course), but by reading or hearing about story after story, experience after experience of others just like me. There's more of us out there than I could ever have imagined! The similarities in our stories is impossible to ignore, yet we each have our own individual chapters, only just slightly unique to us and only us.
I'm forever grateful to have found so many websites full of remarkable information. I feel much more prepared to fight whatever I need to fight when I'm as knowledgeable as I can get. Also, I'm so very grateful to have found online support groups/networking sites. When you are affected by a chronic illness, or are a caregiver or practitioner, it is of utmost importance to surround yourself with kind, compassionate people who you can trust and relate to. Humans are social beings (as well as spiritual beings..) and we need each other! Whatever it is that brings us together, who cares? All that matters I think is that when like-minded people come together, anything is possible!
I was kind of intending this blog to serve as an online diary, of sorts. It's therapy. Even if not a single person reads my blog entries, I won't be disappointed or offended. Who has time anyway? I just hope from this point on in my rehabilitation, I will feel well enough to consistently follow through with these blog entries. Maybe I'll binge, by typing on & on one week (or day even), then purge. Meaning no one hears from me for days or weeks. To the uninformed, when I disappear like that, that means I'm probably not feeling too well. Anyway, I'll try to just do my best. For me. If I could help just one person out there, that is my goal. I just hope my experience in this matter could help prevent someone else's future suffering. That is all.
In an effort to remain truthful, real, I will try to be as candid as possible. There is an extreme amount of shame that envelops one's experience with Lyme. The bizarre, complex, ubiquitous collection of symptoms (and may I add, quite extensive) would make anyone feel crazy, if not damaged and worthless, to say the very least... I have found comfort in not only finding caring, compassionate doctors (Lyme-Literate, of course), but by reading or hearing about story after story, experience after experience of others just like me. There's more of us out there than I could ever have imagined! The similarities in our stories is impossible to ignore, yet we each have our own individual chapters, only just slightly unique to us and only us.
I'm forever grateful to have found so many websites full of remarkable information. I feel much more prepared to fight whatever I need to fight when I'm as knowledgeable as I can get. Also, I'm so very grateful to have found online support groups/networking sites. When you are affected by a chronic illness, or are a caregiver or practitioner, it is of utmost importance to surround yourself with kind, compassionate people who you can trust and relate to. Humans are social beings (as well as spiritual beings..) and we need each other! Whatever it is that brings us together, who cares? All that matters I think is that when like-minded people come together, anything is possible!
I was kind of intending this blog to serve as an online diary, of sorts. It's therapy. Even if not a single person reads my blog entries, I won't be disappointed or offended. Who has time anyway? I just hope from this point on in my rehabilitation, I will feel well enough to consistently follow through with these blog entries. Maybe I'll binge, by typing on & on one week (or day even), then purge. Meaning no one hears from me for days or weeks. To the uninformed, when I disappear like that, that means I'm probably not feeling too well. Anyway, I'll try to just do my best. For me. If I could help just one person out there, that is my goal. I just hope my experience in this matter could help prevent someone else's future suffering. That is all.
Getting started...
Wow. Can you believe that I started setting up this blog months ago?! Well, finally after working bit by bit just on the setting up part, I think I'm ready to do my first post. I better hurry up, because who knows? Tomorrow I might not be able to think of the right words to articulate the mess of thoughts circling around my head.
So, it's been 13 1/2 weeks since I've had the PICC line and the intravenous antibiotics. 5 months now for the oral ones. For about 4 days now I can finally say that I'm starting to feel a little better. That's not saying much since I would half to rate my functioning now on a 1-10 scale at about a 3. So, that's improvement from the 1-2 range I had been hovering at for months and months.
In some aspects, I started to see "Me" emerge slowly after starting treatment. Every now and again, little bits of the personality I used to know. This disease has quite a reputation of fully devouring every trace of the person you used to be, the life you had, everything. I've never been someone to fear or loathe change. I welcomed it. Maybe it's the Gemini in me, whatever it is, I welcomed change. That is, when it was on my terms! I was a fickle control freak, I guess. The Universe has its ways of putting us lowly humans back into our place...
Sometimes our life can change so much and so fast that suddenly we don't recognize oneself. What happened? Who is this person I see in the mirror? I now find it slightly humorous that I spent the majority of my adult life so overly focused on outward appearances, striving for my own personal 'perfection' of sorts, to now reflect how my standards are now. Basically, 3 years ago I would have rather had a root canal than go more than 2 or 3 days without a shower, fresh clothes & make-up. Now, I need help bathing. So, that only happens when it becomes absolutely necessary. Just too much work.
In the last year, I have become extremely over-sensitive to most toiletries, cleaning & laundry products, synthetic fabrics, chemicals of any kind. I immediately can get a reaction to even brief exposures. You don't realize how toxic our environments have become till you're sick. Then it's easy to see how years & years of exposure to thousands of chemicals & toxins build up in the body, finally overwhelming the immune system.
I now am fully aware the impact stress has on the body, mind & spirit. Stress comes in so many forms, it's hard to fathom. Environmental stresses, like I mentioned above. Physical stress, or even psychological stress is easier to identify. One obscure form of stress is from the psychic realm. Bad energies. Psychic vampires (energy stealers). Basically, it's a lot to overcome. As it turns out, I've realized that I'm quite a fighter.
I'm still sort of in the grief process. My goal is to fully accept me as I am now, my current situation as it is, and to be completely okay with that. What I still struggle with are these deeply rooted feelings of inadequacy. If I felt inadequate before I got sick, how in the heck can I ever feel adequate with the way things are now? It's a process...
One thing I know for sure... sometimes you need to lose everything to realize that you had everything you needed all along.
So, it's been 13 1/2 weeks since I've had the PICC line and the intravenous antibiotics. 5 months now for the oral ones. For about 4 days now I can finally say that I'm starting to feel a little better. That's not saying much since I would half to rate my functioning now on a 1-10 scale at about a 3. So, that's improvement from the 1-2 range I had been hovering at for months and months.
In some aspects, I started to see "Me" emerge slowly after starting treatment. Every now and again, little bits of the personality I used to know. This disease has quite a reputation of fully devouring every trace of the person you used to be, the life you had, everything. I've never been someone to fear or loathe change. I welcomed it. Maybe it's the Gemini in me, whatever it is, I welcomed change. That is, when it was on my terms! I was a fickle control freak, I guess. The Universe has its ways of putting us lowly humans back into our place...
Sometimes our life can change so much and so fast that suddenly we don't recognize oneself. What happened? Who is this person I see in the mirror? I now find it slightly humorous that I spent the majority of my adult life so overly focused on outward appearances, striving for my own personal 'perfection' of sorts, to now reflect how my standards are now. Basically, 3 years ago I would have rather had a root canal than go more than 2 or 3 days without a shower, fresh clothes & make-up. Now, I need help bathing. So, that only happens when it becomes absolutely necessary. Just too much work.
In the last year, I have become extremely over-sensitive to most toiletries, cleaning & laundry products, synthetic fabrics, chemicals of any kind. I immediately can get a reaction to even brief exposures. You don't realize how toxic our environments have become till you're sick. Then it's easy to see how years & years of exposure to thousands of chemicals & toxins build up in the body, finally overwhelming the immune system.
I now am fully aware the impact stress has on the body, mind & spirit. Stress comes in so many forms, it's hard to fathom. Environmental stresses, like I mentioned above. Physical stress, or even psychological stress is easier to identify. One obscure form of stress is from the psychic realm. Bad energies. Psychic vampires (energy stealers). Basically, it's a lot to overcome. As it turns out, I've realized that I'm quite a fighter.
I'm still sort of in the grief process. My goal is to fully accept me as I am now, my current situation as it is, and to be completely okay with that. What I still struggle with are these deeply rooted feelings of inadequacy. If I felt inadequate before I got sick, how in the heck can I ever feel adequate with the way things are now? It's a process...
One thing I know for sure... sometimes you need to lose everything to realize that you had everything you needed all along.
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