One Down, and I don’t Know How Many to GO

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!

Nooooooo!

 

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

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Heading Back to Work Very Cautiously

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.

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Source: pixabay.com

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

Summer 2017

Howdy ya’ll! I hope your summer is sailing along smoothly. I always feel extra lucky because as a teacher, I have summers off (kinda). The first 6 years I taught, I worked in the summer. I spent 3-4 summers as a shift manager at Starbucks (I had been a manager for them before teaching) and then I spent about 3 summers teaching as an adjunct.

After that, sometimes, I would teach a summer high school course. This wouldn’t be all summer, just 3 weeks. And some summers, I attended conferences and or week-long workshops. However, these past 4 years, I haven’t done anything of the sort. I struggle to keep my summers work-free so I can rest and try to get my health on track.

I now marvel at the things I used to do before getting severely ill. I also used to adjunct during the school year, usually teaching one evening college class each semester. No can do now. And so, because of illness, I have definitely modified my activities.

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But back to this summer. So some things I’ve been able to do that I normally cannot manage while working:

1. Hangout with friends. Nothing fancy but stuff like dinner and lunches. Just visiting and spending time together.

2. Go grocery shopping! I’m so not lying. This chore can be so overwhelming and so full of anxiety for me I just cannot manage it. So I’ve actually sort of enjoyed (except the bill!) going grocery shopping for us this past month.

3. Spend time with family. With energy so limited while I am working full-time, it is rare to just get together with family and visit. It’s a total gift to get to do this unplanned.

4. Be upright and not in pain after 4 p.m. daily. Sure, I still have to rest. And yes, I do still have pain periodically any time of day, but it’s nice to know that some days, I can be up and active in the afternoon, on a weekday!!!

So as you can see, there’s nothing too crazy going on here this usmmer. But I’m glad I have the time to do a few cool things I can’t do normally.

I’m off to cook some dinner for my husband. I forgot to add that to my list! 🙂

Happy Summer, friends. Talk to you sooner than later. -b

P.S. I really feel like Bilbo below!!

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What’s Going On?!?

WOW! So my out of town doctor (OTD) at my last appointment in May looked over my labs (the ones where my ITDoc said my thyroid was “fine”) and said the numbers weren’t where we should have them. OTD then added more thyroid meds and told me to start tirtrating up from 5 mcg and to continue to add another 5 mcg weekly until I hit 20 mcg. OTD told me to stop at the dosage anytime I began to feel better and more energetic. Since the middle of May, I have added the thyroid meds and maxed at 20 mcg around May 28th. Again, this is medication in addition to the Synthroid I have been taking for years on a daily basis for Hypothyroidism.

With the first 5,10, 15 additional mcg I really didn’t notice much. Maybe a little more pep but nothing too noticable. Then, I hit the 20 mcg. Again, not much felt different the first week of this dose. But after about 2 weeks, BOY HOWDY! This past week has been seriously amazing.

Some things I’ve been able to do this past week that I haven’t done for months on end……and that I definitely haven’t done all in one week for YEARS are: Go out for dinner with friends, go to a movie (at night!), go grocery shopping (I am not kdding), go to lunch with a friend, mow the entire yard (like an acre), clean the house, do laundry, cook dinner, go do errands and actually enjoy said errands! Stay upright most of the day! I also have added small increments of excercise on my old elliptical machine.

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Source: Netflix GIF

I’ve had the best time! I know that most of the above a normal person can do without much thinking about it, but for me, it has been something else. Have I still had some joint pain? Yes. Have I still hit some energy walls? Yes. Am I not working right now? Yes. But still!!!

Now granted, I probably have absolutely no idea what “normal” is anymore. After 4 years of treatment and about 7 years of being ill what I can remember is most likely skewed. But I honestly haven’t felt this good and full of this much energy in….well, I have no idea how long. While I have had some hours and maybe a few days sporadically over the past year where I felt well enough or I had enough energy enough to do a few things, I have never had an extended period of time – a whole week! – where I felt like this.

I’m savoring every single minute, my people. Every. single.minute. My husband says we’ll take what we can get, and I say Amen to that. I know I’m not “cured.” I also know that my being off from work for the summer helps. I also realize that I’m starting a new treatment protocol of combination antibiotics and high doses of those antibiotics in just a few days. There will be fallout from this treatment. I will have to detox, to deal with new symptoms, to handle herxes. I know. I know. The thought  of lsoing this momentum makes me want to not go ahead with this protocol. But, I need to try it. I’ve never been treated with combination therapy and if I’m going to do it, the summer is the best time for sure.

But until I start the new meds, I’m going to kick it up as much as possible. I’m going to try to squeeze in everything I physically can while I feel good. So I’m off to do some projects. I hope your weekend is wonderful. And a Happy Father’s Day to all you dads out there. Take care of yourselves.

Peace and joy- Belle

 

 

Hey Tired, Meet FATIGUE

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.

Happy belated Martin Luther King day!

Peace -b

Circling Back Around

Hi there. I know, I know. It’s been awhile. Too long in fact. I hope things are joyful in your world. Between going back to work (over 2 months ago), and dealing with this severe fatigue, I haven’t really done much at all besides try to get to work each day. Nothing to write home about, you know? It’s kinda boring to write Hi Guys, I still have Chronic Lyme, Chronic Fatigue, and Fibromyalgia and some other stuff. And even more boring for you to read! But we’ll forge on. 

While things at work are going well considering my limitations, I’ve been struggling physically and emotionally, mostly because, well, first, we are getting close to the 4 year mark of this diagnosis and the beginning of treatment for said diagnosis. And, yes, as I’ve shared before, there has been progress made, man, it sure feels like it hasn’t been much. I mean not much for a 4 year mark. As the patient, it is very difficult to be objective about measuring “progress” as well.  Another reason I have been struggling is that the severe fatigue is back, yet again.

There’s no way to plan when dealing with severe fatigue. I can’t rest one day, and then feel so much better the next. I can’t save up energy to use as I would like to. Not that there would be much energy to save up at this point. Still, if I could save up energy, I would totally be strteggically planning! But, severe fatigue is somewhat or more like always unpredictable. Anyway, it’s back and rearing it very ugly head! 

As many chronic fatigue sufferers try to explain severe fatigue to a “normal” people, there don’t seem to be enough metaphors nor analogies to clearly describe what severe fatigue feels like. The Spoon Theory is a good start, but on some days, we have no “spoons.” So we get up, maybe, and start the day with a zero balance or a deficit of energy. And this just keeps going on, day to day. Month to month. It can be a spirit breaker for sure. 

My doctor, at least my local doctor, looks at my labs and says, “yes, of course you are having severe fatigue.” All the numbers doc watches are low when they should be high. The EBV is flaring again, so that adds to the crazy chemistry going on in my body. Inflammation markers are off the chart too even with my dietary changes. Add that to the fatigue as well. Doc tells me to keep doing the B12 shots, the ATP Fuel, the Glutathione shots. I say, OK as I wonder when I might be able to make it through a day without feeling the crushing tiredness. I know (or at least keep the flame of Hope lit) that this cycle will end but sometimes it is hard to remember when every day, every hour is weighing on me like a heavy stone. 

I feel bad when my friends ask how I am doing. They try to keep up with me, but I move at a snail’s pace anymore with nothing new to report for months, and now, for years. They ask, How was your weekend? Are you ready for the holidays? What are you doing next Saturday?  And right now, unfortunately, I honestly don’t know how to answer. 

  1. How was your weekend?                           A:  It was great. I spent most of it in bed.
  2. Are you ready for the holidays?              A:  My head explodes, LOL – God, no.
  3. What are you doing next Saturday?       A: Uhm, I think I have an important                                                                                                       appointment scheduled – with my bed.

Speaking of my bed, I need to go change the sheets and get it made so I can climb back up in there. Hoping this Sunday brings you cooler weather and happiness crafted for the soul. 

Peace -B

P.S. Thoreau makes me happy. I hope he makes you a little happy too.

Chronic fatigue returns
Keep on keeping on…..

 

 

The Brain Says No More

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

3 Tips for Responding to “How are you doing?”

As a recently inducted member of the Chronic Illness Club (CIC, if you will), I joined several online support groups. And now, 3+ years later, I see many posts about this topic. Many times, as Chronic Illness People, we struggle with how to respond when someone asks us how we are doing. Why do we struggle? Because all of the time, most of the time, there is some pain or symptom(s) we are dealing with at the moment. So when we are asked this question, we feel trapped. We debate on what we should say: Should I say “I’m fine” even though I really am not? Should I say “I’m good” and hope that next time, if I say I am not so good since chronic illness symptoms wax and wane constantly, the other person will understand? For those who have never had nor been around someone with a chronic illness, it sincerely can be a difficult thing to understand completely.

If you have a chronic illness, then quite possibly I am preaching to the choir about the misunderstanding part. And many times, as members of the CIC, this is where we can severely get bogged down in these encounters with our unrealistic expectations, our over-analysis, and our misconception that there is a lack of empathy from others. Yes, there are times we will have encounters where the other person does not meet our minimal expectations,where this other person does not empathize at all. But I hope I can convince you that these negative encounters are or will be guaranteed to be few and far between after you check out my tried and true tips! So without further ado…..

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Source: http://www.pixabay.com

3 Tips for Responding to “How Are You Doing?” :

1.  “I’m OK, how are you doing?”

While this may seem like  is an obvious one, let’s explore the root of why we may not want or don’t use this response more often and why we often are frustrated after we have the interaction. As CIC members, sometimes, we feel guilty merely stating “I’m OK” because in truth, we aren’t. Many times we are dealing with invisible symptoms, ones that can be very painful and/or ones that make us feel terrible inside such as headaches and nausea. Somehow, we feel that if we do not respond with the absolute truth that we are lying. On the other hand, sometimes we use this response but we really mean, “I feel like CRAP!” and when the other party doesn’t read our mind, we get frustrated, angry, and hurt. We think that the other just doesn’t care about us because he/she didn’t “get” that we merely stated the pat answer but expected a much different response. I know I have done this many times as I have tried to navigate chronic illness and communication. It’s tough. But, none of us are mind readers. If you want someone to know anything, you must tell them in concise words. That’s just how it works.

2. “I had a rough day yesterday, but I’m doing a little         better today.”

With this response, perhaps it will feel a bit more authentic and truthful. We have days, hours, minutes, where we have relief, and we can enjoy ourselves. But those moments can change on a dime as we well know. One of the hardest things, I think, for others not in the CIC to understand is how quickly symptoms can change. It was a challenge for me when I first became ill to get the hang of this game! One minute I can be decent. I can hold a conversation with absolutely no problem. Yet, not 5-20 minutes later, I am suffering severe nausea, and I am experiencing word-loss. This occurrence is hard enough for those of us experiencing this to discern, let alone someone who had no idea how this works. Personally, I like this response or a modification of it because I’ve found that people can understand it and relate to it on some level. Another version of this might be “I had a great day yesterday, but today is tough.” Most people get this kind of a statement.

3. “I’m really not doing too well today, but thank you for asking.”

This may result in the other person not knowing how to reply, but in my limited experience, people get this one as well. While you are not explaining the sordid details of why you are not feeling well (you can save that for your BFF who REALLY gets it), you are telling the person, hey I’m not doing too hot. Also, you are acknowledging his or her effort and thoughtfulness to check in on you. Look, bottom line is that if every interaction with us becomes a negative or an uncomfortable one for the other party, it probably won’t happen much, if at all after awhile. This is just human nature. We move towards positive interactions and away from negative ones. Granted, sometimes this can trigger more questions, but maybe that is a good thing! It can open the door for us to have a candid conversation about our illness. This can also lead to more positive interactions, as well as more understanding and empathy.

Regardless of how we respond to the question above, in the end, it isn’t the other person’s responsibility to make us feel a certain way, nor his or her obligation to “guess”  what we mean. I know, I know. Psycho babble. But it is to our advantage if we can make these interactions more positive and less stressful for ourselves. All in all, others are sincerely trying to be kind and caring. While this isn’t as easily done with us, it can work. These small and yet important connections with others can be spirit lifting. It can help of feel connected to something bigger than ourselves. It can help us feel less isolated and less misunderstood. 

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Source: http://www.pixabay.com

Do you have any tricks or tips to add to enhancing communication with others? If so, please leave a COMMENT! I would love to hear about other techniques. 

On a final note, I am on summer break from teaching high school. I just had a colleague text me, “Just checking on you and your health. I hope hope you have been able to relax!” I am replying with, “Yes, indeed! Summer break is so wonderful. I can rest whenever I please. Thank you for thinking of me. How are you doing?” 

This completely made my day. Wishing you a both a painless and joyful day. -Belle

 

Just ACT Normal

So for about the past monthish, I’ve been struggling with both fatigue and a weird rash that popped up on my face and arms. Let’s just say it wasn’t fun. But, I’m back on track, the rash is gone, the fatigue hangs in, and we are moving forward into our last week of school.

Being chronically ill with Lyme disease or chronically ill with any other disease means figuring out what one and do and not do on any given day. And while working full-time, my routine is basically, go to work, come home eat and rest. Weekends are for resting. This spring, I have missed several functions due to feeling terrible. You know, like baby showers, dinners, birthday celebrations, hanging out with friends and family. Looking back on this past spring, I think I have  been at a real function maybe 3 times? Now, don’t get me wrong, I am in no way a social butterfly. But still. I definitely try not to feel guilty when I have to cancel, and I try to be good to myself, especially when I feel depressed about having such a restricted lifestyle.

While honesty is the best policy, sometimes it just works better to try and put on the Normal Act. Recently, I was able to attend a celebration. Overall, it was really nice. I also was able to see friends and family that I haven’t seen in quite awhile, so that made it even more awesome. Here’s the thing though, it wore me out. When I get into situations like these (and again, it isn’t very often), I do feel stressed out. Sometimes just talking can be an absolute chore and/or nightmare. And while yes, I am a teacher, and I have to talk a lot in my position, well, it’s hard to explain, but it is different. Worst case, as a teacher, I can wing it because I have experience. Yes, I do have conversations with my students as well, but most of the time his happens, it is usually just one on one without a ton of extra stimulus. It is easier to “act” normal and to be in control of the situation. Not so much at a party.

Sometimes, in a social situation like a party, or something involving many people, I really do my best to “act” normal, to put on the public mask. But it is damn hard. It takes a lot of work. The noise level, the meeting of people, the small talk, the picture taking. Wow. It just overwhelms me. I guess this is due to the neuropyschiatric symptoms of Lyme. One of my strategies to dealing with this kind of thing is I try to switch to auto-pilot. I try not to think too hard. I try to speak in simple sentences. Really, not speaking is the best.While at said party, I forgot someone’s name that I have known for quite a long time, I switched up words, I forgot words. And as my body and brain became more tired, the worse it became.

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However, people can be so very kind. They want to talk to me about how I am doing, how is the treatment, am I making progress, etc. I do indeed appreciate it all. But it can cause a bit of anxiety for me as well. I think it is my cognitive wires getting crossed. So some things that came at me the other day: Have you tried ***treatment?, You look great, you must be feeling better!, Mental health is 50% of overall health, and more. Of course, I want to engage in conversation, I want to interact with others. Yet, this alone takes so much energy. It all just wore me out.

 

On a positive note though, like I said the party was fun, and I was able to rest all day yesterday. I hope you all are enjoying this Memorial Day.

Namaste – Belle