Hi all!! I know it’s been a skip and a beat. The aftermath of Hurricane Harvey ate up much of my time, then school started. Starting school 2 weeks late has thrown things off and so, I admit, it has taken me awhile to get back into the swing of things. I honestly didn’t realize that it had been so long since I had posted.
I hope this finds you and yours well. While the first day of Fall has come and gone, I can attest that it certainly has not arived whatsoever here in Houston much to everyone’s dismay. In fact, yesterday, the high was 90 degrees. No bueno. Yes, the shadows are changing, birds are gathering, and clouds look “fall-like” and yet, it is no cooler. I believe there is a cool front rolling through this evening (LIES!), but I don’t dare to look at WeatherBug and be disappointed again.
But hey! I still have Chronic Lyme disease! However, the months of July, August, and most of September were the best I have felt in the past 4 years!! It has been like the clouds in my brain cleared away and the sun felt brighter and life was more beautiful. Sincerely. When I saw my OT (out of town doc) in September, she asked me what I thought was working and making the difference. Here’s what I told her:
the additional thyroid medication she put me on in May,
being off of work (I had all of June, July and half of August off completely),
and maybe the combo therapy of antibiotics ahe put me on in June.
But really, I don’t know for sure.
I started back to work in mid-August, then the Hurricane/flooding, then 2 weeks off, then back to work. This is week 6 of being back to work full-time. So far, it hasn’t been bad. But I can start to feel a change in my body. It feels like I’m slipping somehow, albeit very slowly.
At my OT doctor appointment in early September, my doctor decided that it was time to start weaning off the antibiotics. I was hesitant but I also know that we have to see if I can manage without them. I have been on Rifampin since March and on Ceftin and Zithromax since June. I eliminated Zithromax first, then Ceftin, and this is my last week on Rifampin. I felt alright without Zithromax. But the week I stopped Ceftin (about 3 weeks ago), the daily headaches seemed to return.
At first, I blew it off thinking it was becuase I had a cold. But I can say for sure now that the headaches are back. I’m also feeling a little less energetic. Again, I doubt myself and make excuses – I’m back at work, I’m not sleeping as much, I’m…..but I know deep down that it is Lyme related.
I’m giving it this week, and then I will contact my OT doc. She said to let her know if I start having symptoms again as I come off the antibiotics. Of course, I am having all kinds of thoughts, worries, emotions about this but that is for another post. 🙂
I just keep telling myself not the dismiss ANYTHING nor any SYMPTOMS. I have to trust my gut on everything and that is OK. Lyme became CHRONIC in my system because it was left to go bonkers for years in my body.
That ain’t happening again. Not on my watch.
Peace to you, friends. Until next time xxoo – Belle
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.
Hello my peoples! Yes, I have been so MIA these past 3-4 weeks, and I will tell you, I miss blogging. Yet, duty calls (code for JOB). Work started back up earlier this school year (as in 10-12 days earlier) and right now, it is taking up almost every spare minute I can manage along with being chronically ill. Although, and I am probably forgetting something major, I feel like this weekend will be a time for me to catch up. (Please, God, please!)
My Post Summer 2016 Life thus far: I am teaching all dual credit (high school/college) freshman composition classes this year, which is very cool, so this makes for approximately 132 students total across the five classes I teach daily. Awaiting my undivided attention in a cubby on my kitchen table are about 110 essays to grade, add to that about 75 online responses to a novel we read..the picture is becoming clear, no? To my credit, I did grade about 25 of these yesterday along with another 25 responses to another piece. And grades are due this coming Friday. You heard, correctly. And my Gradebook is blank at this moment. I believe, or rather hope, that I am just going crazy right now because, HEY, it is the beginning of the school year, and quite honestly, I blank out when it comes to both the beginning and the closing of any school year every.single.year. Sixteen years later, I should know exactly what to expect.
My Post Summer 2016 Health thus far: My health is holding up ok so far, but I have really been pushing it at every turn, and I know I need to get balanced ASAP, or there will be fallout. Is crying to and from school considered fallout? Maybe. Yeah, so that’s been happening. Not every day, but enough for it to be awkward. And not because I don’t want to go to work or come home; it’s just at certain points in the past 3 weeks, my body and brain just feel soooo overwhelmed and tired that I can’t even have an appropraite emotional response to anything. Mental capacity has shifted into Overdrive, and it is causing memory issues, I know it is the neuro-lyme. Or as stated above, I am just going crazy right now. *Note the key word is “now.” LOLs
The picture above is a perfect visual for how I feel at the moment! (from a really cool website http://www.firstcovers.com). Thanks for hanging in there with me. I promise I will get a decent and somewhat interesting post up as soon as I can get my head above water (please send positive vibes my way that this will happen for me THIS WEEK). As always, I appreciate your stopping in to read and comment. Drop a hello if you can. I’m missing my biggest bloggies fans. Have a fun and safe rest of the holiday weekend. BTW, I can’t get that Counting Crows song, Miami, out of my dang head! 🙂 Peace-B When summer opens, I see how fast it matures, and fear it will be short; but after the heats of July and August, I am reconciled, like one who has had his swing, to the cool of autumn. –Ralph Waldo Emerson
Hi out there! I wrestled with writing two paragraphs about how work is going and then, bam, they were gone. Since I cant muster anymore energy, it will have to wait. Maybe the disappearing text is reflective of my segue back into work? LOL
More to come on how work is going. Right now my Lyme brain cannot do anymore, so I bid you all a goodnight. Peace, my peeps – B
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
I really never knew what “fatigue” was until I contracted Lyme disease. Honestly, I cannot even think of a useful metaphor to describe real life altering fatigue. I could say it feels like cement blocks are tied to your feet, but that truly only tells half the story. I could say it feels like you are stuck in quicksand and cannot move, but again, only a slice of the true experience. True fatigue cannot be explained easily to those who have never experienced it for any length of time. Maybe imagine if you will how you have felt at your MOST TIRED. Where you cannot even move. And then, try imagining experienceing this daily for months and even years. Fatigue encompasses everything: the physical, the mental, and the emotional. Not one aspect of being a human is left out from the fangs of fatigue.
I know what tired means, and I am sure you all do too. And sometimes, being tired is a good thing. It can mean that you had a productive and busy day. I remember when I was a kid, I would be tired from running around all over outside all day. Having dinner, a bath and then falling right to sleep conjures a happy memory. But fatigue? Real fatigue? I never knew ye before this. Now, I can pinpoint the ebbs and flows as accurately as a Richter scale.
Since before being diagnosed with Lyme in March 2013, I would suffer phases of fatigue. It was cyclical and so I attributed it, during those times, as just pushing myself too hard, taking on too many projects, doing too many activities. It would linger for a bit and then disappear. Gone are those care-free days. Not anymore. The fatigue has latched on and for the past few years, I have only really experienced varying degrees of fatigue. But it all boils down to the same thing: I’m too exhausted to do much of anything.
I completely understand that people who have not experienced severe fatigue struggle in trying to relate. I did as well in my Pre-Lyme life. But fatigue is not being tired. If I am tired, I sleep. I sleep and then feel rested and ready to go. With fatigue, not so fast. I can be soooo wiped out and yet. When I climb into bed, I may not be able to sleep. I go to bed tired and wake-up tired. During February, it was even worse. I could barely get up and go to work. Some days I just didn’t make it.
Never in my previous life had I spent a whole entire day in bed because I was “tired.” Now, that happens periodically. There have been several weekends this spring where I only manage to get out of bed to use the restroom and maybe to eat. Even eating can feel like an overwhelming burden sometimes. For a few weeks this past February, I would be so fatigued, I woulod actually feel sick to my stomach if i had to move around at all. Now that is some “sh*t just got real” stuff.
And yes, my doctors and I have run the gambit as far as making sure nothing else besides Lyme is causing this issue. Regularly, my doctors check my vitamin B and D levels. I give myself shots of B as well as Glutathione (helps the body make energy) on a weekly basis. I have cut almost all sugar out of my diet (not all but a lot!), I only drink one cup of coffee a day (usually!) and I steer away from caffeine the rest of the day. With help from medication, I can in fact sleep a solid 8 hours without waking up with joint pain during the night like I was doing before treatment.
Still. The fatigue hangs on. Being so tired makes it hard to concentrate, hard to be productive, hard to communicate. Sometimes, I just try to stay away from people because it is so exhausting. Sometimes, merely watching television is an overwhelming activity. Sometimes, I feel like I am looking from the outside in on myself and I wonder, WTH?
One story that is actually very helpful in communicating fatigue to “normal” people is the Spoon Theory written by Christine Miserandino @ www.butyoudontlooksick.com This anecdote has helped me as well as some of my family and friends to understand in a relatable way.
Luckily, right now, I am on an upswing (if you will) as far as energy is concerned. Now, let’s not get crazy – this means that I can basically get through the day at work (a big deal!) and then rest in the evenings and on the weekends. I am not choosy; I will take whatever improvement I can get at this point.
I hope this post finds you healthy and happy, my friends. Until we meet again – Belle
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