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
So here we are, a Thursday afternoon. Another day of rain. Another day of school closure. Yes, you are correct. We live in the Houston area. Our little own piece of paradise or the “mud pit” as my HB calls it is located outside of the metro area and just west enough to avoid the horrible and devastating flooding that has been happening.
With all of that in mind, my own small world is truly not of any concern nor should it be.
And yet, I will share. Yesterday, one of my friends, let’s refer to her as WF, texted and invited us to meet her and her husband for dinner. My HB was gone to get groceries and run errands so we instead decided this evening would work better. OK. Cool.
Except that, and I know this very well, often, because of my symptoms, we have to cancel plans. My friends know this as well. The day started with my stomach in turmoil. Headache. It rained for several hours this morning. Joy. I took anti-nausea meds and lay back down for a few hours. Back up about 2 p.m. I went outside with the dogs and got a bit of fresh air. Back inside to do laundry, mopping, and such well, you know, “mud pit.” I consumed a few crackers with almond butter. Then, the nausea returned. The bandage is to take the meds…and I have been doing this now for a few months. Instead, I drank some alka-selzer gold – no aspirin – which can help a bit.
Still no relief. The only way to describe what it is like to a non-lymie is it feels like the flu. Headache accompanied by a nauseated tummy with a possible side of indigestion. Lots of fun. A perfect situation to go out to eat at a restaurant. Yeah, not so much.
The conclusion? We had to cancel. My HB kept asking me if I just wanted to go and have drinks, if I wanted to go without him. I know he meant well, but feeling bad is feeling bad. In fact, he’s cooking up some vegetables right now and the smell is making me nauseated. Please don’t tell him.
Anyway, to make this long story longer, when I told my HB that I was feeling yucky and that I couldn’t make it, he said, “Really, you just shouldn’t make any plans. You always cancel.” Wow. OK. Yes, there is a lot of truth in this statement. And honestly recognizing that truth is what grabbed and twisted my heart. I could only reply, “You are right.”
Still. While I do know that breaking plans is disappointing not just for me but for everyone involved, I just shouldn’t do it at all? Then what? I can barely keep up socially at all with my friends and family. I miss more functions than I can attend, that’s for sure. But, I don’t know. Anyway, I’m back in bed now, trying desperately not to be bummed out about it all but it’s pretty much not working.
I short change everyone in my life. I realize that yes, I am sick, but disappointing so many other people surely has taken its toll on me as a person. I feel less than. Not all of the time but definitely right now. My friends were gracious as always about our cancellation. But for me? My heart still feels twisted up.
TGIF! Wow. What a week. I really hope yours was better than mine. As I have mentioned in some of my previous posts Turbulence of Lyme Symptoms, Fire in the Hole, and Derailed, there is a lot of inconsistency in how Lyme will manifest itself each and every day. There are some things, in my case, that stay pretty constant such as daily headaches, joint pain, and fatigue. But then there are those other issues that crop up from time to time, I guess maybe they are flares?, and it is impossible to prepare. What’s the saying, the devil is in the details?
And so last Sunday, I started having severe nausea. It lasted the entire day. I couldn’t eat, sleep or do anything. I just laid in bed, trying not to move around. The moving made the nausea worse. Indeed, it was a day where I just wished I could get out of my body for even like 10 minutes to get some relief. I chalked it up to eating some jalapeno sausage that morning; I knew I shouldn’t have eaten it but it was delish but soooo not worth it.
Unfortunately, no. The illicit sausage was not the problem. On Monday, when I tried to get up to get myself ready for work, I felt really nauseated. Then, the headache joined in. There was no way I could make it to work, let alone teach all day. Monday and Tuesday were more of the same. In the meantime, I was trying desperately to get into my Lyme doctor (LLMD) but there were no appointments available- for the entire week. Whaa? They were very clear that they could NOT fit me in even if I came in when they opened and waited. When I explained again my symptoms, the front desk told me that a nurse would return my call that afternoon. That was Tuesday. By Wednesday evening, no one had called me. Although I was able to get up and go to work on Wednesday, by that afternoon the nausea was back rearing its ugly head. Now, please do not think that I have an entitlement issue. I realize doctors are extremely busy and overbooked. I realize that there are other patients out there who also need to get in for a visit.
On the flip side though, this is my doctor who is treating me for Lyme disease. I can’t just go “anywhere” to get treatment. Other doctors, and almost all here in the South, are not trained on Lyme nor do they actually believe it exists here in Texas. This is the state of the medical options we have for Lyme here and in way too many other places in the US. In fact, Lyme is endemic to Texas. Check out this research done by Texas A & M University “Lyme Endemic to Texas.” Thus, going to another doctor is really more of a waste of time than anything. The ER was an option if I started having other issues, but mostly it was the severe nausea that was the new thing. All of my other symptoms are dealt with in the daily grind; they ebb and flow. But the nausea. God, it was (is) the worst.
It feels like I need to throw up (sorry TMI!) but I can’t. That kind of nausea. No vomiting though. I tried to stay very hydrated. I tried eating Saltines off and on. Yet, about 30 minutes after eating or drinking tea or Sprite, hello tummy monster! Anyway, I emailed my doctor, and I was able to get in yesterday afternoon. Supposedly, I have a virus. I say supposedly because honestly, I think it is more Lyme related than anything else. But I took what I could get which at this point was to get some sort of relief from this symptom. I was prescribed Tamiflu and anti-nausea meds and told to come back next week if it was still going on. Today was better because of the anti-nausea meds, but I’m still having experiencing the nausea.
This is how the Lyme bacteria works. It is a very stealthy and intelligent. According to Lymedisease.org, “Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. If not treated as soon as infected, then the chances of it reproducing and getting into every system of one’s body is extremely probable. Now granted, not everything can be attributed to Lyme. But for me, most of the time, my symptoms are directly related to Lyme disease.
Again, I hope you all had a much better weekly journey than I did. Take care – B
Lyme disease affects each person in a variety of ways. It manifests itself differently and thus, this makes it even harder to diagnose correctly and treat correctly. Lyme disease is frequently called the great imitator. In many cases, Lyme is misdiagnosed as Lupus, MS, CFS, and FMS, along with several other illnesses.
For me, when I was so very sick, some of my more prevalent symptoms included neck pain, daily headaches, severe fatigue, joint pain, sleep disturbances, lower back pain, and nausea. I also had severe brain fog, memory issues, and neuropathy in both feet ranging up to my knees. During the course of treatment, some of these symptoms have subsided. But there sometimes are symptoms that I never had that will just randomly crop up. And I’m like, hey what’s up? Where have you been all of my life? Not.
Joint pain seems to migrate around. While my right hip was constantly in pain for, well, I don’t know, maybe the first year before and then after diagnosis? But then, for awhile in the spring of 2014 my right wrist would hurt off and on. It continued like that for about 3 months and then, bam, it was gone. My ankles sometimes will ache so badly. I bought these crazy ankle wraps at CVS. The inserts can be heated then you wrap the big, chunky, bright blue wraps around each ankle. It helps but there’s no way to wear these at work. Anyway, surely the fashion policy would stop me! I’ve taken to keeping several sizes of the analgesic patches everywhere. These work for the short term so at least they provide a bit of relief. I’ve never had knee issues which is interesting as this seems to be a classic symptom of people with Lyme or so the CDC says.
And then lately, my left elbow and now forearm is hurting. It started in my elbow in early November. It’s an achy and sore kind of pain. I figured it would be gone by now, but it actually these past few days seems to be getting worse. The pain is now also in my forearm. Heat helps. I’m not even left-handed. I’ve been putting off dealing with it; however, it is really is hurting almost constantly now. When I see my doctor next week, hopefully, she can help me out. Or at the very least rule out other possibilities besides Lyme.
It’s always a big surprise with Lyme! Never a dull moment! At least the daily hip pain, and the neck pain is pretty much gone now. I’m just glad that not everything hurts at the same time. When that happens, life just plain out sucks.
I hope everyone is having a good weekend, and I hope all my peeps up North are safe, snug, and warm. Cheers -b
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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