5 Proactive Ways (maybe) to Balance Work and Lyme

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??

Trying to find a balance
My room awaits….

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.

Just a little TLC needed to make this feel like Home…

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:

  1. Pace ourselves – uhm, yeah, THIS! And it is #1 for a reason. 

  2. 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.

  3. Try out 2-3 yoga poses at lunch or during a break every day. Just taking a few minutes to stretch can feel rejuvenating.

  4. 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.

  5. 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

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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

 

On the Antibiotic Wagon

I hope everyone is staying cool. Temperatures here have been raging at around 105 degrees and that is the REAL temperature, not the heat index which is even higher. For the love of God, it is hot. Between noon and about 7 p.m., it is way too hot for me to go outside. The heat just completely zaps me.

I had my doctor visit a few weeks ago. Things seem to be pretty status quo in that my numbers are all hovering basically at the same place as in June. Here’s where I stand right now: CD57 – 33, Lyme bands 23 and 41 showing IGG and band 41 IGM, EBV is reactivated; it had been inactive since April, Mycoplasma finally under control, and HHV6 active again. In all honesty, this is for the most part where I was at the beginning of last summer. What I expected was my doc would put me on another course of antibiotics since I have been on amoxicillin for about 5 months now. Instead, on the patient lab VM, she said we were going to take a break from the antibiotics.

http://netdna.tinyhouseblog.com/wp-content/uploads/2014/03/medicineshow.jpg

It freaked me out. I listened to the VM about 3 times. My brain is like, Are you Sure?!? But there are no certainties with Lyme now, are there. I was so sick when I was finally diagnosed and I have not had more than a day or two break from being on antibiotics in 27 months. In in those 27 months, I have made some significant strides. So, yes, it is freaking me out a bit! I know I need a break, my body needs a break, but I feel like I have lost my walking stick. It’s only been 3 days without meds, and I keep analyzing myself, waiting for new symptoms or for the flu-like monster to rear its ugly head. It’s hard not to worry.

Also, right now is about the most stressful time for me at my job, besides at the end of the school year. In a mere 10 days, school is up and running and so am I. I’m struggling between being happy to return to the classroom after a nice summer break and the dread of becoming severely ill. While I know it is not a good thing to worry and stress, it’s there in the back of my mind, the What If? Meditation, and I use that term very lightly as I am just dipping my toe into that arena, is helping some. The breathing combined with focusing has helped me clear my mind some. Like one of the mantras in AA, I’m taking it One Day at a Time. Or one hour at a time. It’s just a challenge for sure.

Anyway, I’m on the wagon, and we’ll see how it goes. My next doctor visit is early October. By then, the weather will still be hot, but the evenings and mornings will be cool, school will be in full swing and hopefully, my immune system will have stepped up and kicked some butt.

For those of you not on antibiotics, or taking a break from them, any suggestions on how I can support my immune system right now? I appreciate any and all recommendations.

Till next time, friends, -B

Who am I?

I know we all ask ourselves this same question at any given time of the day, week, or year. But since beginning my journey with a chronic illness, I ask it even more than I used to. And now when I ask, sometimes, I don’t know the answer and that is so freaking scary.

An introspective person by nature, I live in my inside world much of the time. And I like it. In fact, if I don’t get enough of that time on the inside, it makes me a little bit cra cra. Stressed. Deflated. I’m not anti-social, just to clarify. I like people. Learning the intricacies of human nature is something of a calling for me; I am a hard-core people watcher. At least I used to be. I used to be better at people. You know, observing them, listening to them, interacting with them. My core has always been my sanctuary. Then along came Lyme.

Although not a fan of worn out cliches, Lyme indeed threw me a “curveball.” Not in the sense that I had my life all planned out and wham, but in the sense that, well, I never saw it, this, Lyme disease, coming. Then, in reality, everyone can use this cliche. I mean, I would guess that most of us are not sitting around thinking, “oh, today something life-altering will happen to me.” It just does. It happens. We do our best to deal and to move on from whatever is thrown at us.

It’s just sometimes, I feel like I missed the curveball. I missed the pitch, the swing, hell, I missed most of the game. It’s almost as if I have been plunked down onto the field, and we’re well into the 8th inning, and friends, I am not winning. I don’t have a strategy anymore. I’m confused about what inning it is. I’m calling a time out with none left. It’s a weird feeling. Maybe not so much as a feeling of being altogether lost, but a feeling of being very disorientated.

Everything about me seems more vague than it ever was before. Lyme has seeped its way into my neurological system, into my brain. Weaving itself into my memories, my thoughts, my ideas, my authenticity, I can’t navigate my way through any of it. I keep telling myself that my foundation, the true me is there, stable, indestructible, unwavering, and most of the time, I feel that this is true. But there are the other times. The times where I struggle to find my way back to Me, to the inside world. Lyme chips away at short-term memory. It can produce “‘a microedema, or swelling in the brain,’ says Bernard Raxlen, MD, a Greenwich, CT, psychiatrist and secretary of the International Lyme and Associated Diseases Society (ILADS)…”

Not remembering how to spell words, how to say a certain word, how to have conversations, are only a few samples of the brain issues related to Lyme that I experience.  “This [Lyme disease] affects your ability to process information. It’s like finding out that there’s LSD in the punch, and you’re not sure what’s going to happen next or if you’re going to be in control of your own thoughts,” Dr. Raxlen adds. Ergo the missing of the curveball pitch. Ergo the forgetting of people’s names, of what I just read, of what I just said 5 minutes ago. Even my long-term memory is in shambles sometimes. I try to recall something, digging deep, sifting through that soupy glob of eating cotton candy at a carnival when I was six, scrubbing dishes at the little Mexican restaurant where I worked when I was nineteen, and throwing bales of hay into the wagon when I was ten, all the while merely just trying to remember how to say “FHA” without stuttering 10 times when I get the the “H” on the phone with a customer rep. And, yes, this did just happen to me. Embarrassed doesn’t even begin to describe what I felt as I struggled to get the sound out of my mouth. Let’s try lost, disconcerted, terrified. Yes, that sounds about right.

How will I be able to stay whole if the very center of myself is starting to fade away? If I can no longer reach my inner sanctuary to have a clarity of vision? To know Who I am, my true authentic self?

Who am I?
Who am I?

 

Holding on with all of my might, embracing all the pieces available to me still, I’m going to get my head back into the game with as much clarity as I can muster, so to speak.

Take care Warriors.

Until next time – B

**If you get a chance, check out “This is Your Brain on Lyme” by Sillia. It explains in much greater detail and with less philosophical musings, the effects of Lyme on the human Brain. A huge thanks to Sillia.

Fire in the Hole

Fourth
Fourth

Well, I certainly haven’t been diligent with posting. Just a quick update, I’m still having issues with my lower back. Insurance has denied a lumbar MRI. Doctor exploring possible colon issue, possible pinched nerve, and a few other things. The pain is bearable, and I just don’t have the gumption to fight the insurance on it. My kidneys are good and they were my main concern. However, I have had all kinds of other check-ups and doctor visits just to make sure the rest of me isn’t falling apart: eye doc, dentist, general doctor. All of those visits have turned out just right. None of this is an excuse for not posting!

Hopefully, all of you enjoyed the 4th of July weekend. We had plans both Saturday and Sunday, but Lyme played its card, and it was a doozey. One positive is that since I have been having better days, I can really feel the herx when it comes on. I started feeling under the weather on Saturday. I honestly just chalked it up to a busy week; I actually was doing things a “normal” person might do! Running errands, grocery shopping, doctor visits. It was all kind of amazing. I haven’t been up for much of any of that in a really long time. Last summer I had a PICC line so I was somewhat limited in my scope. I also didn’t feel really great most of the 5 weeks I was dosing. Anyway, by Saturday afternoon I was in bed with a headache. My husband had to go to our friends’ party by himself but he was very understanding and that helped me not feel so cruddy.

By Sunday though, all was lost. I woke up about 3 a.m. and felt so nauseous. I managed to slip back to sleep for a few hours but by 6 a.m. I was up. Everything was hurting. Joints, head, tummy. Oiy! I took a hot Epsom salt bath and went back to bed. Yet again, we had to cancel with friends. But I just couldn’t even “suck it up”!  I mean, have you ever felt that kind of nausea where you just do not want to move because it makes it worse? Yes, that was my Sunday in a nutshell. I was literally in bed all day long. And no reading or anything productive. The little a/c window unit on high, the curtains drawn, and the heating pad on full blast was what my day entailed. I finally crawled out of my cave about 7:30 p.m. and ate some corn on the cob.

Today is better. I’m exhausted and my stomach is still making some strange noises but overall, I feel like I am going to make it. I really thought I was doing a decent job on detoxing but maybe not so much. I am just so grateful that it is summertime, and I can manage this disease a lot easier and without inconveniencing a bunch of people. Of course, I am sorry to have missed all of the fun with our friends. Trying not to beat myself up about letting people down is a real struggle for me, as I am sure it is for all chronic disease warriors.

Again, I hope this was weekend you were able to make some great memories, – B

Havoc! And #LymeDiseaseChallenge!

Well, ladies and gents, it’s been a nightmare of a ride these past 10 days. Ironically, my last post was discussing the sometimes, most times, sporadic onset of symptoms. Then, tada! Totally happened to me. And the worst. I hadn’t been feeling all that great over Easter. I was having tummy issues, nausea, indigestion. And headaches. Really painful headaches. I missed a family member’s birthday celebration along with Easter since I was basically incapacitated.

Then it was Monday. And all hell broke loose. I got up and started getting ready as usual. About 25 minutes into my routine I began getting dizzy, lightheaded, and severely nauseated. Just like that. I laid on the bed for a minute, panting and hoping I wouldn’t throw up. I couldn’t go to work like this. No way, no how. I spent the entire day in bed miserable. I couldn’t eat. My stomach kept cramping and then the migraine made its appearance. Tuesday was yet an instant replay of Monday. No fever, but I could not stay upright. I have never felt this horrible before.

Wednesday I already had an appointment with my LLMD set. My mom had to drive me. I was afraid of a dizzy spell or whatever might show up next. I’d like to say my doc had all the answers. I wanted Doc to tell me that I could do *this and I would be OK. Alas, as it always is with Lyme and Company, not so much. My EBV is reactive and has been since January. I have a mycoplasma pnuemonia infection. I have one MTHFR mutation. I also now may have an hpylori bacterial infection which I am being tested for. My body is on the fritz. Overloaded by fighting on so many fronts at once, I don’t know, maybe my immune system has just given up. I was to stop my antibiotics, and I was directed to bed rest for the next 2 days through the weekend, returning to work Monday. Oiy. I told Doc that this is the worst I have felt since beginning treatment 2 years ago. Definitely scary and disconcerting. The rest of Wednesday was a replay of Monday and Tuesday. I swear, I haven’t slept so much in my life.

So here I am, resting. The nausea let up finally yesterday. I was able to eat a decent meal as well. Headaches are manageable. I feel like at least half a person now. Missing this much work had been distressing though. It worries me and while I want to plan for the future, what do I plan for? Right now, I plan for the Worst Case Scenario: I can’t work. Realizing many of my fellow Lyme sufferers are already in this boat, I am extremely grateful that I can still work and that I can manage these incidents for now.

While I am waiting to get my labwork back, Doc tested me again for EBV, mycoplasma, hpylori, thyroid (I have Hashimoto’s) along with ATP, CD57 and Lyme, I am wracking my brain about what I can change on my side to make things better. I definitely need to detox better and more. I think it is time to make a serious diet change. And most importantly, I need to embrace the fact that I am chronically ill and start working with what I gots. As the Indigo Girls sing, “What makes me think I could start clean slated, the hardest to learn was the least complicated…”

*you know, a pill, a diet, a one stop shop cure

P.S. My pretties, please do not forget about www.lymediseasechallenge.org and check out Dr. Oz and his segment about The Lyme Disease Challenge!  #lymediseasechallenge

www.lymediseasechallenge.org
http://www.lymediseasechallenge.org

I hope it is a pain free day – B

The Turbulence of Lyme Symptoms

http://www.dailymail.co.uk/news/article-2336338/The-everlasting-storm-Stunning-images-unique-phenomenon-Venezuela-lightning-raged-EVERY-NIGHT-thousands-years.html
http://www.dailymail.co.uk/news/article-2336338/The-everlasting-storm-Stunning-images-unique-phenomenon-Venezuela-lightning-raged-EVERY-NIGHT-thousands-years.html

One thing that I think all of us experience as Chronic Lyme patients is the comings and goings of many different symptoms. Oh, yes, there are some symptoms that stay with us loyally, never leaving our sides. But then there are those symptoms that show up off and on like fair weather friends. You know the ones. For me, my Lyme best actors are joint pain, headaches of some degree, and muscle aches. Best supporting actors? Nausea, dizziness, achiness, joint pain in other joints, well, I could go on. For me, the hardest thing about all of these is how they can come and go so quickly. I have tried to find rhyme or reason for this but there really doesn’t seem to be anything that is a consistent trigger, at least for me, other than overdoing in some way (physically and/or emotionally) the day before.

Sometimes, I can go for half a day with just some joint pain and a nagging headache. This isn’t bad at all! Then, BAM. Full blown horrendous flu-like symptoms. I have to get to a place to lay down, shut out the light, try and think about happy moments in my life because my head feels like it is hitting a wall. My stomach cramps up and the nausea is overwhelming. This is what I like to call the main event. It can last for minutes, hours or days. How does one plan for anything with these kinds of things happening seemingly out of thin air?

Like you all, I try to plan ahead. I hope and pray that on the day of a planned out, party, dinner, etc. that I will be feeling “good” and that I can attend. More than many times, I have had to cancel plans. I have even tried resting the day before but again, it doesn’t seem to effect the next day’s outcome at all. It’s upsetting, frustrating and most of all disappointing. Staying at home in bed is not my idea of a good time.

So for an example, my husband and I were out yesterday, picking up some items for our garden beds. Actually, it was nice being out and about, looking at all of the beautiful plants and flowers. I guess we were there about 40 minutes. By the time we left, my head was beginning to play its tune; it was time to go home. Once home, I had what felt like a flu. A strong headache, stomach nausea and indigestion and stomach cramping. I spent the rest of the afternoon in bed, nursing my symptoms as best I could.

Today, I was able to work a bit outside earlier in the morning. Feeling the cool breeze on my face and the sun on my back was pure joy. The dogs kept us company while my husband and I pulled weeds and cleaned up the garden area. My husband, a very sweet man, said, “I’m glad you are out here.” I was glad to be out moving about, too. One day at a time and sometimes, one moment at a time.

Happy Easter, friends. Don’t forget to take The Lyme Disease Challenge if you haven’t already!  🙂   -B

Back to the Twelve Steps

Howdy out there, friends and a big Happy New Year! I can’t lie, it’s been a tough couple of weeks. Coming down with a cold on Christmas Eve and working itself into some kind of bronchitis, I am just now starting to resurface into the land of the living. Seriously. While the holidays were great, I was sick for much of the winter break. And, I barely made it back to work this week; three days out and a trip to the doctor finally has culminated in what I hope to be a complete recovery from this midwinter cold! I hope all of you fared much better over the course of the holidays.

Did I make any resolutions? Not so much. Except this. Health has to come first this year. No matter what. A friend and I were visiting last week, and she asked me what the hardest part of having this chronic disease is, and I really had to think for a minute. For me, the most difficult thing has been this: I am a workaholic or at least I was. Working hard and giving it my all has always been a brick and mortar component of my identity. Working hard and being independent. Learning how to step back a bit, learning how to balance work and home; learning how to say no, or no, I can’t do it? These have been really difficult challenges.  In recent months, I have had to, just for survival reasons, take a few things off my plate. Framing this is a positive way to myself is the real struggle for me. I am trying to take it all in strides and to learn as much of what I can about myself as I go through this process.

Have I learned anything thus far? I think so? 🙂 I have learned that NO amount of stubborness and hardheadedness (what a word!) will make something happen if I physically and/or emotionally cannot do it! Ha ha! As if this needs to be learned at my age! But apparently, it does. So that is one thing. What else? Yes, that in fact, the world will not end if I cannot do something or take on another responsibility. And, I have also learned that if I do not answer an email ASAP, nothing will actually catch on fire. Again, I laugh at myself for being a bit anal and uptight this long as far as some of these things are concerned. I have also learned how amazing my support system is and how grateful I am to the people who put up with me each and every day.

If I had to make an analogy, and I will although no one is asking, I would say that for me, dealing with a chronic illness is like the road to recovery. Like AA, or Al-Anon in my case. Here’s what I mean. Every single day has to be taken one at a time. I have to be diligent to not fall off the wagon of gratitude and thankfulness into the pit of depression. I have to keep looking for those little daily gems of awesomeness and learn to enjoy them. The first step in Al-Anon is to admit we are powerless over alcohol-that our lives had become unmanageable. Instead, I substitute Lyme Disease for alcohol. So, here it goes, 2015. I admit that I am powerless over Chronic Lyme Dis-ease and that my life has become unmanageable.

Damn. That was hard.

DaliLama

Hope this finds you all well and toasty. Peace – B

Accepting or Embracing Chronic Lyme

Howdy, fellows!

Loss for words
My brain on words!

I think I may have mentioned before that I am in the process of accepting, or at least trying to accept, the fact that this disease is going to take a while to shake off. Not only am I struggling to come to terms with that, I am also struggling with the notion that this is a chronic condition (even though the CDC denies this fact).  For me, there is a fine line between acknowledging the illness and embracing it. What I mean is that in my messed up brain, I feel like acknowledging  that I do have chronic Lyme equals giving in. And, I am not a fan of that!

It is ridiculous, I know. Accepting does not equal giving in, but again, in my lymie brain, getting over the semantics of it seems to be a real challenge! Plus, I just read an article about Debbie Gibson in which she states that she doesn’t call her experience with Lyme Disease a battle, she calls it “overcoming” Lyme Disease. See here: http://www.people.com/article/debbie-gibson-lyme-disease-recovery. She says that referring to Lyme Disease as a battle gives it more power. Maybe. Maybe. So, I guess for me, maybe this is a similar conundrum.

Yes, there are bigger and more important fish to fry! But the reality is that I have been dealing with this disease for several years now. I spent about 4 years sick with no idea what was going on, and now I have spent another 21 months in treatment. Sometimes, it is difficult to think about all of this time spent “overcoming” this illness. Although, many people out there have suffered way longer than I have for sure. I just feel like the words I use in my self talk are really important. Do you feel this way? Or am I wasting time on something that really means nothing?

At first, when I started treatment, I did feel that it was a battle. But now, almost 2 years later, I feel battle weary. I was really hoping it would be a short war, and that I would be the victor! I bet we all had hoped this!!   But here I am, years later and still, every day feels like I am fighting. Fighting to get up, to go to work, to make it through the work day…etc. I sure do not feel like I am overcoming anything! Lately, though, I have tried to just accept that indeed, getting up each day for work is a challenge, working all day is a challenge. I am trying to get my brain in sync with my body but without giving in.

Does any of this make any sense to anyone out there? Bottom line is that I know I need to accept this stage I am in more than I do right now so I can hopefully move forward and deal with life as it is right now a little better. But how do I acknowledge or accept where I am right now without feeling or thinking that I am giving in? Can anyone relate to this at all and if so, can you give me any suggestions/advice?

Wishing you all a pain free day. Peace-B