Howdy out there! In our neck of the woods, we’re enjoying the 60 degree weather and the World Series brouhaha. We’re also hoping the Astros win!! Fingers crossed.
So, I’m off of all antibiotics now for Chronic Lyme. It’s been about a weekish. In the past 10 days, I have been feeling the fatigue creeping back in. Not drastic by any means, but I can feel its weight. By about 1 p.m. in the afternoons now, I’m pretty much done and I’m ready to go home and rest. A few nights this past week, I have gone to sleep by 7 p.m. While I’m not noticing a lot of other symptoms, I’m still worried and pensive about not being on medication. I did blood work last Tuesday, so hopefully the results will be back this week and I’ll hear from my doctor.
I know I shouldn’t worry and that “it is what it is” but easier said than done. It’s hard to find a balance between ignoring and obsession! I am trying to be hyper-vigilant without being a freak. Hmm.
Work is going well. My students are great, and I think we all adjusted after Hurricane Harvey postponed our start for a few weeks. It still feels weird though that Thanksgiving is just 3 weeks away. How did that happen?
Anyway, being a teacher and one that is chronically ill, 5 performances daily can be extremely difficult (teaching is a demanding job even when one is healthy!). I work hard at projecting an energetic and positive image while in the classroom regardless of how I may be feeling. My audience is 15-17 year olds, and they can sometimes be a very tough crowd, even on a good day!
But here’s a note I received in my mailbox from one of my students on Friday:
“You’re kinda cool, I guess.”
I literally laughed out loud. Really, this is like receiving an Oscar in my line of work. I’ll take the wins when and where I can get them.
Happy Sunday, my people! I hope this finds you well and happy. So, I completed my first week back to work following our summer break. So far, so good. And granted, there are no students until August 28th. That may prove to be a different story. Of course, I may be running on a tad bit of adrenaline right now, what I have of it. I’m trying to pace myself if that is even possible. I’m not sure if it really is most of the time.
This past week was a lot of sitting and listening. It was also a lot of being around peoples and many of them for about 8-9 hours a day. The first few days, I struggled with over-stimulus. I also struggled with so much sound. About a year into my Lyme treatment, sound and light sensitivity became a real issue. I had never experienced either of these in my life so at first, I thought I was just being extra paranoid about my health or something. Then, I asked my doctor about it and she said both of these are Lyme related! I am not overly sensitive all of the time, but sometimes they both can really wreak havoc. At a couple of points throughout the week, I just had to go and find a quiet place to sit for a few minutes. I also utilized my migraine glasses for light sensitivity. I sincerely LOVE these Axon Optics glasses!
We have another week of professional development on our campus. There isn’t much time set aside for working in our classrooms which is really just too bad. I’m not that stressed about that aspect because I know I can get it done in time, but I feel for new teachers. I am sure they are feeling mega-overwhelmed by now as I remember I did the first year I taught!
I am worried about sitting for so long every day in not-so-comfy-chairs. In fact, they are really uncomfortable. I figure I will get up and move as much as I need to in order to keep the fibro at bay as much as possible. I also worry about my brain functioning correctly. I seem to be ok in the mornings but depending on many things such as sound, lighting, peoples, pain, etc., things start shutting down up there and I just feel like I am running into a wall every time I try to have a thought. I hate that feeling but I’m trying not to fight it. It doesn’t help to get mad or stressed about it. It is what it is. I am merely trying to use my brain as much as I can when it cooperates! You know what I mean?!?
I hope you had a great weekend. And here’s to the week to come: May we all have a smooth and pain-free week. Peace – B
Honestly, I’m not sure I wrote about trying to make the decision about whether to continue working or not this past spring. I am a high school teacher in my 17th year now. This past March, my health and mental health were at the breaking point, and I had to go on a medical leave. That alone was tough. I was out lof work 3 weeks (one week was Spring Break). It was much needed time off to rest and get physically to a less fatigued state, and I was able to make it through the rest of the school year when I returned from leave.
But taking a medical leave definitely made my husband and I have some serious and challenging conversations about whether I should continue to work or not. We’ve actually been talking about it for a couple of years now. But finances weren’t where we wanted them, savings wasn’t enough, we have a daughter in college….blah, blah. You know it all. Yet, in March, I was so bad, everything was so bad, that those things just weren’t that important anymore. If I had to stop working, we would deal with it.
And yet. After some discussions with my husband, my family, and co-workers, I have decided to return for this school year. I’m worried though. And I may be putting myself into an awkward position if I have to leave in the middle of the semester or at semester time. I agonize over leaving my students like that, over possibly leaving my colleagues like that – basically in a lurch. But, work told me that I need to do what I can and what I want and if it comes down to a decision such as leaving then I will have to do it, and it will work out. Bottomline is they would rather have me there for as long as possible then have me resign prematurely. This in itself is a relief of sorts. I know I’m replaceable; it isn’t that. I just don’t want to cause issues for others. Teaching is hard enough when everything is going smoothly!
Once I made the decision to go back, I was excited. Then, I transitioned to feeling freaked out. This summer, my health has improved. I don’t know if it is the new antibiotics I am on or my additional thyroid meds or a combo but it has been a real JOY! Yes, of course, I am off for the summer and so I can rest, etc. when I want, but I’ve been doing this for the past 4 summers and I can tell you for certain, this summer has been different. I’ve had days and weeks of energy levels I haven’t experienced in YEARS. YEARS.
With this new found improvement in health, I am even more anxious now to return to work. Weird, right? I’m afraid I will lose this feeling, this energy. I’m fearful I will end up feeling so overwhelmed and fatigued that I can’t do anything outside of working (and even that became impossible in March). I don’t want this little victory for my quality of life to go away or be whittled away somehow.
I don’t know how I am going to handle the 8-9 hour days. Many of my physical symptoms have improved but what if I go into a flare? WHAT IF? I know I am making myself silly by worrying about thinsg I have absolutely no control over. I logically know this. I keep telling myself that I just have to take it literally day by day. Step by step. We’ll have to see how it goes. We have a Plan B…kinda.
Teachers start back tomorrow. We’ll have a few weeks of professional development and then students are back August 28th. I’ve only ben anxious since Wednesday. Off and On….all of today. The alarm is set, I have my bag packed, there’s not much else I can do, right?
I want to be excited, and I am. I’m beginning my 17th year of teaching, my Awesome department chair gave me the classes I want, the schedule that best suits my health needs, the team I want to work with. There is absolutely nothing to not be grateful afor and about! My biggest WISH is that I am able to complete this school year in a healthy state.
Thanks for reading and for listening, dear peoples. Peace – Belle
What’s new in my world? It’s been a tough spring, I won’t lie. In March, I had to take a medical leave from work. I was just dragging at everything, missing work days, spending every minute at home laying down. It truly was torturous. I couldn’t manage to gain any ground at all even after resting all weekend long.
It was depressing as hell. It was like watching a movie. You could see what was going wrong but no control in changing it. I was just a zombie. The chronic fatigue was impenetrable. I was out of work about 3 weeks. I tested positive for Lyme and EBV again (not new infections but chronic ones) and my doctor put me on antibiotics. I was a little better when I went back at the end of March. It was still a challenge daily to get through each day but it has progressively improved.
I’m still on antibiotics. I’ll have another follow-up on June 28th, so we’ll see. School is out for the summer and that helps too. I considered not working next year, but I’m hopeful I can gain ground this summer and honestly, I’m scared to not work. I know, it’s weird. It’s all very emotional and right now; I am planning on returning to work in August.
I’ll post an update about my doctor visit I had in May with my doctor out-of-town. She’s offering up some treatments being done overseas that sound both promising and expensive. I’m trying to do some more research. More to come and soon!
I hope your summer is off to a great start! I’ve missed blogging, and I look forward to reconnecting with you all!
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?