Word Loss

**WARNING – THIS POST IS DEPRESSING. PLEASE DO NOT READ IF YOU ALREADY FEEL DOWN.

These past 2-3 weeks have not been good for me. I am struggling in every single area of my life: work, personal, mentally, physically. I have not been optimistic in awhile. Between attempting to cope with my cognitive issues, which have become many of late, along with the physical challenges of nausea and body pain, my personal relationships are indeed failing. I can see it happening, but I don’t know what to do to make it stop. Any of it.

I do my best at work. I know my attitude is not always optimal, but I am really trying my hardest. Communication is difficult even on a “good” day. And communication, well that’s kinda “my thing.” It’s something I take great pride in and something I have been good at my entire life. But not now. Although an overused analogy, my brain feels like swiss cheese. I can’t remember regular words such as pliers, consistency or ambiguity when I need these words. My short term memory is almost nil at times. I keep asking co-workers and my husband the same things over and over. I feel like I am slowly going insane. Not being able to remember, not being able to recall basic words while speaking, spelling words incorrectly all of the time is so very frustrating and aggravating. This proceeds to heightening my anxiety and my anger. I imagine that to some degree, this is what is is like to have the onset of Alzheimer’s.

And so, my negative persona and my overall hostility rises. I avoid conversations like the plague. I don’t want to talk because, to myself, I seem to make no sense at all. I imagine that others feel the same when I speak. I am alone. I feel so singularly alone in this.

There is no quick fix, and I get it. I have been very patient and open to any and all treatment over these past two years; I have diligently taken my meds. I do my best to keep my diet in check, I try to stay upbeat and optimistic. I am still working full-time. Yet, I still lose.

I still have the dreaded headaches every day. Joint pain. Every single day. I have made some progress with endurance but I still exhaust quickly. While, I think when in the midst of a migraine and nausea, “this is the worst!” really, the slow decay or what seems like decay of my memory and cognition is ultimately the issues that worry me the most.

For if I can’t use words correctly, beautifully, exacting, then who am I? Always one to rely on my wits and sarcasm, without these, I can’t and won’t ever find my way home, back to who I am. I know, I know. One day at a time. Like the Indigo Girls sing, “We’re sculpted from youth, the chipping away makes me weary.”

Right now, I am weary.

Peace. – B

Agitation and Frustration

Hi out there! I sincerely don’t remember when I last posted so just in case, Happy New Year! I was sick through the holidays, and I finally kicked the crud after 3 weeks, a shot of antibiotics in the butt, and some more oral antibiotics. So, it is back to dealing with Lyme only which is a good thing in a way.

I wasn’t going to write today because I haven’t been doing well emotionally this past week, and I don’t really know how to explain it as I am also having difficulty with word recall and with just plain old thinking and processing, but here it goes. This past week, I have been experiencing a lot of agitating and frustrating feelings/thoughts. I think it is caused by stress on top of my limitations to process said stress. Multitasking is just a bad joke on me with my cognitive skills impeded. For the most part, I can manage, but I’m not sure what happened this week. One day, I felt like I was in an agitated and stressed mode all day long to the point that by the end of the day, it felt like it had amped up and turned into significant anger. Anger at what, who knows? I just felt very aggressive, and this is not me. I could not rid myself of the feeling. The thought of feeling insane crossed my mind. It finally went away hours later.

It happened again yesterday morning as my husband and I cleaned the house. We were working and talking about any and everything and I just started feeling the agitation building up. It is really a different feeling than feeling overwhelmed. When I feel overwhelmed, I feel like getting under the covers and staying there for a month. I don’t feel angry; I feel defeated. But this is much different. My mind starts racing a mile a minute and yet, I can’t think fluently. I try to express myself but nothing comes out the way I am thinking it will. Then, as if to add to the pile of thoughts, my brain starts honing in on things like I need to pay bills, how will I make it through the work week, how can I get my grading done with my brain in jumbles, what meals will we need for the week and how will I get to the store? It all starts tumbling around in my head and then my mouth starts moving but in no way am I articulate. Finally, it feels like everything speeds up, and I can’t stop it.

I tell you that this is a new thing. I am wondering, is this a new symptom of the chronic Lyme? My husband agrees and says it is new as well. I really don’t like it at all (not that anyone would) because I start feeling out of control, and I am not sure how to make the OCD thoughts and the agitation stop. Does anyone experience this or something like it as well? And if so, what kinds of things do you do to cope? Yesterday, I went outside and tried to do some breathing exercises. It did help for a bit but it was still kinda scary. Even at this point, my brain feels like it is gearing up now and just thinking is becoming tiresome and yet, stressful!

I sincerely would appreciate ( insert NEED) some feedback and suggestions. Thank you! I hope your week has been a good one! -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

Cry Baby!

So I’ve been quite weepy this weekend. I’m not going to say I never cry, but for the most part, this is a rare occurrence. Basically, I cried some on the way home from work on Friday, cried myself to sleep last night and then, after my husband left for work this morning, I had a mini cry session. What the heck is going on?!?!

I would blame it on my cycle, but luckily, it isn’t that time. I would blame it on what someone said, but besides my husband, I haven’t been around anyone else. Nothing happened at work to spark this; in fact, Friday was a good day teaching-wise. No event, no conversation, no outside force has caused this. Maybe it s hormones affected by the Lyme? Maybe a release of anxiety?

I don’t know, but whatever it is, it is making me feel very depressed. I can only seem to focus on the negative. I’m questioning my treatment, my sanity, my work and my relationships. Right now, I feel like the world is closing in on me. I am worried, exhausted, and stressed. Things like this are running through my head right now: Should I change my treatment? Should I try to cut down at work, somehow, someway? And if I can do this, will it make any difference at all? Or will I go another 2 years, seeing some improvement, but “not quite enough”? Can I even make it another year like this? At half capacity? Dragging myself through each day? Losing the joy for life chip by chip? As per the Indigo Girls, been feeling like these lines, ” We’re sculpted from birth/ the chipping away make me weary,/ and as for the truth/ seems like we just pick a theory.”

Struggling to stay positive, I think to myself, “so many other people out there have it worse that you!” I know this in my heart, but right now, I am being self-centered and feeling sorry for myself. I’m in a dark and lonely place right now, and I just have to own it. Embrace the feelings and move on. For today, I am in a full embrace and it’s hard to let go.

PaulNewmananigif_enhanced-buzz-12372-1379309462-6I hope you all are having a better day than I. Adding a pic of my favorite actor of all time….enjoy!    Peace -B

Haul Out the Holly

Hi all, so this may not be the only post about the Holidays. Back in the day, I would almost be ready to go for Christmas at this point in the year. But in these past few years, it has become more and more difficult for me to get motivated to do anything related to the holidays. Here at our house, we celebrate Thanksgiving, Christmas and New Year’s.

 

Book xmastree

I’m trying not to dread it, the Holiday Season. Yet, every time I turn around, we are getting closer and closer to that time of year. Thanksgiving wasn’t really that crazy, and honestly, neither are the other holidays really. Our family keeps it pretty low key all the way around, but I am still feeling anxious, I guess. There are just so many expectations involved, and I can barely meet any expectations the rest of the year! I am looking at the holidays as a break from work and time to rest, but that is not what most people have in mind. I know that I should be out visiting family and friends, socializing and having fun but a lot of the time, I am just not up for it. This may sound crazy, but with Lyme, I have experienced sound and light sensitivity along with anxiety. Sometimes, it is a little and sometimes the anxiety is huge. Especially when I am in large groups. There is so much going on and so much stimulus, it just becomes very overwhelming.

But hey, overall, I am just trying to be very thankful for all the love and kindness my family and friends have been showing me throughout this journey and, as for fretting about the holidays?  Thems First World Problems, yo.

Sending the sugar plum fairies your way -B

 

Back to Bed

Well, all in all, this Thanksgiving break, I have had a decent run of it. But Thursday and today, I am paying for it. It’s 12:30 p.m. on a Saturday; my husband and in-laws are outside working on our new shop and here I lay in bed. We did go to our friends’ house last night for dinner. It was lovely, and I had not seen them since Labor Day weekend! When I am at work that is about all I can manage to do so socializing it not something  can partake of much these days. The evening was nice and I kinda felt normal, and not the “new normal”, the old normal.  🙂

In an offensive move, I played everything safe, too! I took my meds as scheduled, I drank just one glass and a smidge of champagne, I ate more salad than anything else, and I shared a piece of cheesecake with my husband. I know that alcohol and sugar are not great for me but, I promise, the rest of the time, I do a pretty good job of not using either. We were home by 10:30 also!  But then, I could not go to sleep.UGH.

I took my doxepin as soon as we arrived at home. I knew it would take a bit to kick in, then I took lunesta. But for the life of me….I think I finally managed to fall out about 1 a.m. I guess this is part of the reason I feel so horrible today? Damn! Waking up about 6 a.m. to give my Chihuahua Chino his anti-seizure meds, I could barely get out of bed. The bodyaches were everywhere; I basically limped to the kitchen. No worries thought I, I will take a pain med and all will be better. Chino got his meds, and I took mine and headed back to bed. I was finally able to get warm and cozy and doze off for a few more hours. At 9, when I did get up for good today, I was in as much pain all over as I was at 6 a.m. Plus, the headache started its familiar knocking. Moving around as much as possible and having my daily cup of joe, I still could not shake the body pain. It’s one of THOSE days, friends. Uncool.

Struggling and stubbornly, I did some household chores and then headed back to my sanctuary, my sweet bed. But, I am still hurting, and I feel frustrated. Chino and our other Chihuahua, Boo Boo, are on the bed with me sacked out, and I am writing this blog.

Where I am today!
Where I am today!

Can anyone suggest anything to help alleviate the bodyaches and pain? Anything? I have tried an Epsom salt bath, and I have taken a pain med. Both have helped a bit, but I a still having difficulty moving around which is a bit scary, honestly. What are some things you do to at least push back these symptoms and/or take the edge off? Thanks in advance.

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

Netflix is My Friend

Well, it is a beautiful November day here in the south and yes, I did spend a few hours outside. In a heated whirlpool. Pure HEAVEN. I have decided that I need one of these here at the house. I wish!  Anyway, that is a bit off topic. I’ve never been much of  television watcher; my parents restricted it when we were kids, and I am so glad that they did. I learned that a t.v. should not be on unless one is watching a program. Now, in the 21st century, there are televisions everywhere: doctor offices, grocery stores, restaurants, you name it. Honestly, it is so amazingly annoying.

However, I guess I am now an official hypocrite. We don’t subscribe to cable t.v. but man, we [really, Me] sure can watch some Netflix. Netflix rules! I am officially an addict since becoming ill. While I love to read, reading anything for any extent of time often boggles my brain. You may experience this as well. I sit down to read a book, and then about 3-4 pages in, my head starts to hurt, my eyes don’t/won’t focus, and/or my brain just feels very confused and stressed. So I stop. This doesn’t happen all of the time, but enough so that I don’t do it as much or anywhere near as much as I used to. I am hoping that further into treatment, my reading skills will come back to me. My doctor says this is some of the neuro lyme staking its claim. She is confident it will go away in time.

television-image

Anyway, to stop making excuses for myself, once we purchased a smart t.v. about a year ago, it was on. We live in the country so we have satellite internet, but streaming still works pretty well. I am not going to lie. I love being able to watch shows without commercials and whenever I want to for the most part. It really is the one indulgence I have at this point in the game and one I enjoy. I can watch on the laptop, the t.v. or my Kindle. It is Awesome! 🙂  I know it is a form of escapism but for now, I am OK with that. Would I rather be out doing things, or reading, or creating a masterpiece? Why, of course, but right now, I physically cannot do any of those things because of the pain and fatigue. Netflix is kinda my BFF for the time being, I am a tad embarrassed to say!

What is one or two indulgences you partake in since you can’t do certain things like we used to? Don’t worry. We are among friends! No judgement! 🙂

Happy Sunday all you people, -B

The New Normal

One of the catch phrases in my line of work, education, is that whatever new thing that comes along, and believe me there are so many “new” things that come our way, is that this new idea, strategy, system, curriculum, etc., is the “New Normal.”  It is a phrase used so often our line of work that it really carries no meaning anymore. However, I started thinking about this phrase in regards to my own health.

rockclimbimg

Although I do not like to admit it, I am fairly stubborn when it comes to my work ethic. What I mean by this is I will sacrifice pretty much everything else to “get the job done”!  And, I have been happy to do this most of the time. My work is rewarding, challenging, fulfilling, and interesting. Unfortunately, with my health compromised as it is, the work has become very difficult to perform. It is mentally and physically exhausting. It was this way even when I was in tip top shape, but I was able to balance it out. Now, I force myself to get through the day, sometimes counting how many hours or minutes I have before I can head out to go home.

I HATE this. Really, I do. Already, I have made compromises in terms of work, compromises I didn’t want to make at all. But, I physically cannot keep up like I used to do. Meetings after school? No can do. Extra duties during the day? No can do. Saturday workshops? No can do. I am mostly limited to the 8-9 hour work day, five days a week and even just that can be like climbing Mount Everest. My weekday evenings are spent laying on the couch like a zombie. Sometimes, on the weekend, I can manage a night out, but that is very rare indeed. It is all somewhat surreal. Like this isn’t my life. Sometimes, I think I am having a dream, and I will wake up soon and be able to do everything I used to do at work and otherwise.

But now after 20 months in treatment, I am beginning to realize that in fact, this is my “New Normal.” This is my life right now. It is a hard, hard realism. I’m struggling with it. I would like to believe that if I just keep my nose to the grindstone and keep up my stubborn facade that I will one day wake up and be myself again.Yet, in my heart, I know this isn’t going to happen. While I know I should not look at this as defeat, I feel like it is. I’m wrestling with changing my perspective because I do know that acceptance of this fact is the more positive way to go, but damn, it is difficult!

I am sure there are many of us struggling with this acceptance process. I sure wish it was easier; I wish I could snap my fingers and Wha La! I would be ok with the New Normal.

How do you accept this disease and the hurdles it brings to us? How do you change your perspective about the physical and emotional struggles without feeling like you are giving up a part of yourself?

Wishing all of us peace, -B

Has Autumn Arrived?

AutumnFor those of you up north, autumn arrived weeks ago, if not months ago! But here in the south, we have been waiting restlessly. Two weeks ago, it was still 90 degrees off and on. While we had a semi cool front, it sure didn’t stick around. But, this past week, temperatures at night have dropped to around 55, and in the daylight, it has only climbed to about 85 degrees. This is sheer heavenly weather, people!

So, this morning I was up by 6:30 – crazy, I know – brewed some coffee, then headed out to my little deck overlooking our mini pond. I took a stack of grading with me, but still, it was so beautiful outside. It was so very quiet and peaceful and honestly, it was just what the soul needed after battling through this past week. Thank you Mother Earth!

While it was a short week for us, every day felt like 2 combined into one. It really was that crazy. But it isn’t out of the ordinary, unfortunately. And, no matter how much I seem to get done on the weekend work-wise, I still feel overwhelmed almost every single day at work. Every time I think I have my head just above the water, something comes rushing in and I start to sink again. I am sure all of us have had this feeling at one time or another. It isn’t a good feeling, that’s for sure!

I take things off my plate. I delegate. I make lists. I ask for help. And still, I feel like things just keep coming at me, like bugs on a car windshield on a cool summer evening. I have reorganized, streamlined and outsourced. And still. Those damn bugs keep coming. In the past, my adrenaline would get me through, but I’m all out of that good stuff at this point. I only recently have felt even the twinge of a rush, and it didn’t last. Sure, I can push myself even harder, but then I just have to pay on the other side, in my personal life, which has already taken several hits in the past few years. Already, I come home from work wiped completely out, acting like Mr. Grumpy Pants. Pushing to get some chores done after the daily grind, you know little things like a laundry load and feeding the dogs, ultimately become humongous tasks, and my head and back start screaming for relief. Don’t get me wrong, I am very grateful I still have my job, but at this point, I am wondering, is it helping or hindering my recovery?

My brain is going around and around about this. When I first started treatment, I knew I did not want to stop working. It kept the illusion of “everything is ok” in play for me. This has gone on for about 19 months now. And, I have made progress. Lately, though, I feel like I have hit a wall in my recovery, and I am nowhere near the finish line yet. I am trying to figure out then, what has to give in my overall world to make room for me to work on my health even more. Anyone else in this predicament? And if so, how are you going about making a decision?

I am in a quandary. But, there is no need to make any decision today. I am going to keep working outside as long as I can until it heats up. I am going to breath in deeply and relax. I am going to drink my coffee and ponder ABSOLUTELY nothing.

I hope you all are having a great weekend – B