Over the summer, I’ve felt like my cognitive issues or the neuro Lyme, have improved. In June, my LLMD here in town (I have another doc out of town) started me on a supplement, ATP Fuel. Since being diagnosed with Lyme disease in March 2013, severe fatigue has been one of my major, and quite consistent soul crusher, er, I mean symptom.
It’s continued to be a lingering symptom. Now, when I say fatigue, or severe fatigue, I don’t mean “tired.” There is a chasm of difference, one I never understood anywhere near well enough BLD ( Before Lyme Disease).
You know what makes me “tired”? Staying up too late, doing too many activities, physically or mentally exerting myself ( this excludes Pokemon Go).
But fatigue? A whole other ball game, my friends. Being “tired” means you need sleep so you sleep and wah lah! You wake up feeling like a million bucks! You are King of the World!
But with fatigue not so much. Instead, waking up is a never-ending continuation of the fatigue you’ve been feeling for the last 3, 6, 9 months, or even years. It’s like a prison sentence that you don’t even have enough gumption to get angry about. It’s like being in a cave without light. I could go on but basically FATIGUE is not being “tired.” Fatigue sucks the f-ing life force from your body. And the most depressing thing about chronic fatigue (well, there really is a list of things), is not knowing when or IF it will end. No matter how much rest and how little of everything else, that’s always the question. Will it Ever End?
I’ve written about fatigue before HERE and HERE. Hopefully, these posts can give you an inkling of the severity of the fatigue many Lyme patients as well as many chronic illness patients experience.
Lately, I have been feeling like I haven’t been hitting the mark. What is the mark, you ask? Just feeling like everything is balanced. Right now, I don’t feel balanced in my work nor in my personal life. The scale has been unavoidably tipped, and all of my time seems spent on How I Feel. I am diligently working towards getting this scale balanced again, but now, throwing work back into the mix, it feels like an impossible mark to hit. While my job is rewarding in so many ways, it also drains every ounce of physical and mental energy I can muster each day. By the time I make it home, I feel wasted and withered, no matter how easy or how difficult the day has been. I can’t seem to change these dynamics, which is so frustrating!
After years of fatigue and physical pain, I still haven’t figured out how to squirrel away any energy for myself and my personal life while I am working. I wish I had like a bank where I could deposit blocks of energy, then withdraw as needed! How awesome would that be! When I feel this way, Guilt stealthily creeps in, the guilt involved with not feeling like a productive partner in my marriage, like an active participant in social events with friends, like an emotional engaged human. I know guilt is self-imposed and controllable, but it is my go to feeling when I am worn out and stressed. No bueno. Trying to play psychological games with myself, every time I feel “guilt”, I am working to replace it with feeling “Grateful” instead. Am I hitting the mark? Who knows.
Yesterday, I started feeling Guilty for not immediately reading a student’s novel she wanted to share with me. I asked her to email it to me for future reading. Realizing the Guilt was moving in quickly, I endeavored on removing the Guilt and replacing it with the Gratitude that this person is willing to share a piece of herself with me. I will read the novel, and I will give feedback. I just couldn’t manage it during my lunch break yesterday. It’s all good.
Do you feel Guilt? Do you feel like you are hitting the Mark?
Can you tell I’m a little MEGA stressed out about returning to work full-time on Monday? Maybe more than a little? Don’t get me wrong; I do love my job. Teaching definitely is my thingy, and I wouldn’t want to give it up for any reason. Yet, there is a big BUT. There always is, isn’t there?
Since my diagnosis in March 2013, working has been tough. That spring semester, I’m embarrassed to say, is a blur. I was extremely sick most of the fall semester 2012 then diagnosed with Chronic Fatigue Syndrome, Fibromyalgia, and Lyme disease in the spring. Immediately, my doctor put me on antibiotics and treatment began. Unfortunately, I missed many days that semester. My students were amazing as were my colleagues. I had support everywhere I turned. This made it bearable and motivated me to get to work when I could.
The thought, “I love what I do,” sustained me through many, many hours of pain, nausea, headaches, and much more. It helped me through the 2nd year post diagnosis as well. By the end of the 2nd year, I shed some of the responsibilities I had beyond teaching, being department chair, a sponsor for a club on campus. Letting these things go was so, so very difficult. I felt like I was losing parts of myself that I might never regain. I almost felt at times that I was giving into the illnesses by cutting back on things I just couldn’t do anymore. For awhile, I felt “less than.” It messed with me psychologically and sometimes, it still does. However, it was for the greater good.
Yes, I am glad that I passed the torch to others who can and will do an exceedingly good job. So this 3rd year of post diagnosis found me (and finds me this fall) in a less demanding position with more time to accomplish much needed tasks at work rather than bringing everything home. Strangely though, this past year (school year 2015-2016) almost seemed the hardest one of the past 2.5 years. I’m still trying to figure out the Why it feels like it was such a challenge. Granted, some symptoms have improved. This past year, I didn’t miss as many days and at least 3 of those days were doctor appointments. So, what is the problem? Why am I so dang worried about this new year starting up??
The main thing I am most worried about is the ability to continue my work. I am down to a very limited amount of paid sick days now; I do not have long term disabilty (although added this August, the wait time is 12 months for any claim). Some money is saved for emergencies but not enough (I never think it is enough!). I hear you, my friend, you’re telling me to take one day at a time, and I agree 110%. I so completely agree. And yet.
While I say that my main concern is whether I will be able to continue to work, yes, while that is the big picture, more disconcerting is worrying about how I will feel each day. Last spring was really hard. I wouldn’t have made it through without my BFF/teaching buddy, for reals. She was/is my angel, and I never worried about when I might be out because we shared everything. But my angel has retired. I am freakishly happy for her, but I’m not sure how I will make it without my little buddy cheering me on every day.
In January 2016, I had a cold that turned into bronchitis. Then, I went through a severe fatigue cycle, which lasted several months. And to top it off, I missed a week of school in May due to a terrible rash I developed on the left side of my face, my left hand, and right arm. In between all of this, I saw my regular doctor here in town 4 times, a rheumatoligist 2 times, and my out of town doctor once. Oh, right, and I was trying (key word is “trying”) to teach, 5 classes, every day. It got so bad that I would go to work, barely make it through the day (God forbid there was anything scheduled for after school), come home, feed the puppies, throw in some laundry, and then go to bed. Sometimes, the thought of sorting the mail or taking a shower made me cry. No joke.
Most of April and May were this way. Weekends? No, I could not do anything on the weekends. If I wasn’t trying to catch up on grading, then I was mostly in bed resting or dealing with a migraine and nausea. Both total killers and kill joys. The only function I attended in the spring of this year was a dinner with friends and a graduation party. I missed out on many events, a baptism, birthday celebrations, a theater show, baby showers. My life literally passed me by. And I am afraid of going back to that level of non-functioning.
Well, there it is, boiled right down to the syrup: FEAR. Fear of ending up at that place where all I can kind of manage to do is work. I felt so disconnected from myself and from others when I reached that bottom line, you know, the one below the E? I know that sometimes, we have to go through the motions so to speak but doing that every single day for months? It’s a dream killer, my people.
A.Big.Fat.Dream.Killer. Just barely surviving hour to hour takes the fun out of any and everything. It takes the joy rogh out of talking and bonding with students, chatting with colleagues, planning lessons, etc. I don’t want to go back to that type of physical and emotional state. Did I make it last year? I did. But I honestly didn’t realize how much it took out of me and how much of life I missed every day because I was again, just on the edge of survival.
Maybe you are in a similar situation? Or maybe you need to do a reboot on how to juggle your chronic illness and work? I HEAR YOU! I have to get my head right before Monday.
Here’s my plan of attack, and maybe these can help you too. We (yes, plural pronoun!) NEED TO:
Pace ourselves – uhm, yeah, THIS! And it is #1 for a reason.
Stay on our special diets! For me this is – No sugar, no gluten, no processed carbs, no soda, AND mucho water! When I am feeling tired and stressed, I have a strong voice telling me to eat sugar or drink caffeine. Just say NO.
Try out 2-3 yoga poses at lunch or during a break every day. Just taking a few minutes to stretch can feel rejuvenating.
Shoot for a 5 minute meditation session every day. I mean worst case, I will do my best to squeeze in 3 minutes. Yes, it sounds goofy and yes, it will be a real challenge for me but I keep hearing great things about doing this. I’m going to use the Insight Timer app for Android. It’s free and has some great sessions to choose from.
Try and do something fun/social once a month. This one will be extra HARD!! It’s not that I don’t want to do things; I am sure you are the same, but like me, I am sure you also experience so many times where you are sick and so fatigued to the point you just can’t do anything but rest and/or sleep. Let’s try to do this one and without feeling guilty if we just can’t sometimes.
**Good point. We will revisit these in a month’s time to see how “WE” are doing!!**
What else can I/we incorporate in the day to day to relieve tension and frustration? Any suggestions or wisdom you can share with me?? Any self care I/we can use to keep it together (like everything together)? Really, I appreciate any feedback, suggestions, advice!
On that note, I take leave of you for now. Have a great evening. Here at our Casa, we are going to watch some of The Good Wife and chill in the A/C! Blessings to one and all – B
How gorgeous is this? One of my wonderfully artistic students did this for several of us during our end of year party class a few months ago. Many of her other designs were even more ornate, covering each finger of the hand and wrapping around the wrist. Just beautiful. And it made her so happy to spread the joy to others.
While I loved the design (after drying) it only lasted about a week. Once dry, the dark brown turned to more of a reddish orange color. I had so many compliments, and it was a great conversation starter!
Henna or Mehndi is used to create very intricate and elaborate designs on hands and feet, usually for Hindu weddings, however; depending on country and culture, these may also be popular at festivals and such. Once applied, drying time runs 15-20 minutes. Then the dark brown part comes off, leaving the design temporarily permanent on the hands and/or feet.
How fortunate I am to know students from so many different places in the world! I plan on contacting my former student to see if she would be interested in doing these for me periodically for a fee. It just makes me happy! It is also a celebration of different cultures and traditions.
You can find a lot more information along with awesome pictures of designs here at Mehndi.
I hope your last July 2016 Saturday is sweet one. Best to you, my friends -belle
“Bus is coming, it’s time to leave
the summer’s gone, and so are we…”
“Let’s go shut it down in New Orleans…”
“Miami” – Counting Crows
It’s hard to say goodbye to the extensive time off I’ve had these past 2 months. When I first started teaching, I worked every summer, as well as an extra job on weekends or in the evenings to catch up and pay the bills leftover from divorce. Summers and evenings during the school year were spent slinging coffee, teaching, or both. But for the past few years, and especially now that I’m dealing with Lyme, summers are truly “time off.”
Since we are heading back sooner than soon to teach the young minds of America, my brain is shifting into overdrive. I’m thinking about overhauling one of the courses I teach. Without boring you too much with the details, the overarching theme is the American Dream. It’s a great theme. BUT, I’m seriously wanting to spice it up a bit. We’ll see.
Anyway, I would like to be able to share some of my ideas and get some feedback from you periodically. So, I am creating a new category for these posts. What might these posts entail?
1. Cool stuff related to the content that may come in handy for me later on ( and Lyme is sincerely stunting my short term memory right now)…
2. Ideas for teaching visual rhetoric and argument. I need to
do way more of this with my students.
3. Just writings, songs, authors, art, whatever related to the content I teach, and things I like and love. Like Henry David Thoreau. Or Ralph Waldo Emerson. Or….
4. Lessons I find that are awesome and that I can modify – maybe – to use in my classes (with permission of creators, of course).
5. Ideas for integrating yoga poses. This one is a stretch (and yes, pun intended!) But, I’ve read some research that using yoga with students can be a positive! More info needed along with a lot of consideration for logistics, student participation, etc. This may not be something I can really do this year.
I just wanted to give you a head’s up that I will be doing these posts randomly so you aren’t like, Say What? Yes, I will continue to blog mostly about my journey with Lyme.
With this American Dream stuff though, I will need some help. So get your brains in gear, too!
Hoping your evening is going well. Here’s some Counting Crows for your segue into sleepy time. Peace -b
I was really hoping these last few weeks of school would go very smoothly. I’d made it this far, limping metaphorically, but since spring break, I wasn’t doing too horribly. My protocol since March this year has been herbals only, and so the hope is that my body in conjunction with the herbals can combat the Lyme and send it packing. Yes. I completely understand that after taking a multitude of antibiotics for over 30 months including IV abx is hard on the system. Yes. I understand that my gut flora is messed up. Yes. I know it will take awhile to get my system back on track. Yes, yes, yes. Got it.
Knowing now what I know about Lyme disease and the various ways to treat it, would I go back and do the same thing? Most likely. When I was first and finally diagnosed with Lyme disease, I was severely ill. Not only had I had Lyme for who knows how long active in my system, I also had a viral overload. Several viruses that we normally have once and then build an immunity to had reactivated in my system thanks to the bacterial infection. So, yes. I think treating with antibiotics was the best choice starting out. It took almost 9 months to truly see any difference in what I was experiencing. I didn’t herx either for about the first 9 months. I was one sick puppy.
Very rarely do I forget that I am still dealing with Lyme. It won’t let me forget. If it isn’t one thing, like severe fatigue, then it is another, like nausea and migraines. The symptoms seem to come and go with no rhyme or reason although the headaches seem to stay my constant companion. When my LLMD first started treating me in 2013, she said that “we want to progressively get to a point where you have more good days than bad.” Sounded like a great plan to me. And sometimes, that is the case for a few weeks at a time.
Recently though, I have had a string of pretty rough days in a row. As soon as I can, I will post about what is going on. Right now, I am just trying to put my nose to the grindstone and get through it. Consequences of this situation right now are that I cannot work, so I have been out this week. Of course, I am grateful that I have so much support at my work and people who understand, but I feel bad that my students miss out. But if it had to happen, this really is the better time of year since we are getting close to finals and summer break. It’s been an emotional rollercoaster for a couple of weeks, and I am really ready to get better and get back to work.
So for those of you with Lyme disease out there or a chronic illness, do you also experience a fluctuation in symptoms? Are they triggered by anything that you can pinpoint?
One of the catch phrases in my line of work, education, is that whatever new thing that comes along, and believe me there are so many “new” things that come our way, is that this new idea, strategy, system, curriculum, etc., is the “New Normal.” It is a phrase used so often our line of work that it really carries no meaning anymore. However, I started thinking about this phrase in regards to my own health.
Although I do not like to admit it, I am fairly stubborn when it comes to my work ethic. What I mean by this is I will sacrifice pretty much everything else to “get the job done”! And, I have been happy to do this most of the time. My work is rewarding, challenging, fulfilling, and interesting. Unfortunately, with my health compromised as it is, the work has become very difficult to perform. It is mentally and physically exhausting. It was this way even when I was in tip top shape, but I was able to balance it out. Now, I force myself to get through the day, sometimes counting how many hours or minutes I have before I can head out to go home.
I HATE this. Really, I do. Already, I have made compromises in terms of work, compromises I didn’t want to make at all. But, I physically cannot keep up like I used to do. Meetings after school? No can do. Extra duties during the day? No can do. Saturday workshops? No can do. I am mostly limited to the 8-9 hour work day, five days a week and even just that can be like climbing Mount Everest. My weekday evenings are spent laying on the couch like a zombie. Sometimes, on the weekend, I can manage a night out, but that is very rare indeed. It is all somewhat surreal. Like this isn’t my life. Sometimes, I think I am having a dream, and I will wake up soon and be able to do everything I used to do at work and otherwise.
But now after 20 months in treatment, I am beginning to realize that in fact, this is my “New Normal.” This is my life right now. It is a hard, hard realism. I’m struggling with it. I would like to believe that if I just keep my nose to the grindstone and keep up my stubborn facade that I will one day wake up and be myself again.Yet, in my heart, I know this isn’t going to happen. While I know I should not look at this as defeat, I feel like it is. I’m wrestling with changing my perspective because I do know that acceptance of this fact is the more positive way to go, but damn, it is difficult!
I am sure there are many of us struggling with this acceptance process. I sure wish it was easier; I wish I could snap my fingers and Wha La! I would be ok with the New Normal.
How do you accept this disease and the hurdles it brings to us? How do you change your perspective about the physical and emotional struggles without feeling like you are giving up a part of yourself?
Lately, I have been struggling with the fact that my life has changed. When I first started treatment for Lyme disease, my mindset was that I get through this. I was willing to put in the time. I figured a year would be sufficient. I tested CDC positive for Lyme; I tested negative for the big 3 co-infections. Assuming that the results were correct, I set my mind to healing.
I still worked but my boss gave me the utmost flexibility to leave as needed and/or take absences as needed. I didn’t attend as many social events. I tried to get my proverbial plate as empty as possible. And, I made progress. I did. The backaches subsided, the intense daily neck pain finally went away, the migraines became less frequent, the exhaustion became manageable. All of this was great. Then, I guess I hit a plateau.
So, here I am. I am not 100%. Honestly, inside I feel about 40% of my old self. Outside, I think people actually see me as almost 80%. I am a great faker and a great lier when it comes to the presentation of myself to the outside world. I am sure this is the case for all of us with a chronic disease. But since school started this fall, I feel like I am backsliding. The extreme exhaustion is creeping back in.
I have started seeing my my life from the outside. It is a weird feeling. Does anyone else have bouts of this? I don’t think it is disassociative disorder, but maybe just parts of it. Sometimes, in order to get through the day and what it entails, I separate myself from my physical body. Creepy! No, not in a creepy way! When I do this, I feel like I can make it. It is as if I am managing my symptoms from the outside with less attachment to the pain and whatever discomfort is going on at that minute. The problem is though that I have been doing this for a few weeks now and it is starting to feel like I have two different lives. I just don’t know how to explain it well. Really, though, does anyone else have this going on or something similar?
It’s almost as if, when I do this, the separation, that I am looking at my life and my actions in a snowglobe. Sorry, it’s the best analogy I can think of! 🙂 I am guessing this is a coping mechanism the brain sets up. However, I just don’t want it to become a rabbit hole. Also, I am concerned that this snowglobe effect will become a crutch in the sense that at this point in time, I am not dealing well with the fact that I am now 19 months into treatment and I have hit a wall. Like everyone else with Lyme and chronic disease, this wasn’t my PLAN!
I am hoping all of you out there are having better days than not. Drop me a comment in regards to this thing I have going on with me mentally if you feel comfortable doing so. I appreciate any and all comments!
This is my journey; intended solely to spread awareness of a debilitating, life threatening group of diseases spread by a tiny little tick, spider, flea, mosquito and other tick borne disease hosts. (PLEASE: always discuss your concerns with a Lyme Literate Doctor)
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