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
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.
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
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.
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
For 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
Lately, I have been struggling with the fact that my life has changed. When I first started treatment for Lyme disease, my mindset was that I get through this. I was willing to put in the time. I figured a year would be sufficient. I tested CDC positive for Lyme; I tested negative for the big 3 co-infections. Assuming that the results were correct, I set my mind to healing.
I still worked but my boss gave me the utmost flexibility to leave as needed and/or take absences as needed. I didn’t attend as many social events. I tried to get my proverbial plate as empty as possible. And, I made progress. I did. The backaches subsided, the intense daily neck pain finally went away, the migraines became less frequent, the exhaustion became manageable. All of this was great. Then, I guess I hit a plateau.
So, here I am. I am not 100%. Honestly, inside I feel about 40% of my old self. Outside, I think people actually see me as almost 80%. I am a great faker and a great lier when it comes to the presentation of myself to the outside world. I am sure this is the case for all of us with a chronic disease. But since school started this fall, I feel like I am backsliding. The extreme exhaustion is creeping back in.
I have started seeing my my life from the outside. It is a weird feeling. Does anyone else have bouts of this? I don’t think it is disassociative disorder, but maybe just parts of it. Sometimes, in order to get through the day and what it entails, I separate myself from my physical body. Creepy! No, not in a creepy way! When I do this, I feel like I can make it. It is as if I am managing my symptoms from the outside with less attachment to the pain and whatever discomfort is going on at that minute. The problem is though that I have been doing this for a few weeks now and it is starting to feel like I have two different lives. I just don’t know how to explain it well. Really, though, does anyone else have this going on or something similar?
It’s almost as if, when I do this, the separation, that I am looking at my life and my actions in a snowglobe. Sorry, it’s the best analogy I can think of! 🙂 I am guessing this is a coping mechanism the brain sets up. However, I just don’t want it to become a rabbit hole. Also, I am concerned that this snowglobe effect will become a crutch in the sense that at this point in time, I am not dealing well with the fact that I am now 19 months into treatment and I have hit a wall. Like everyone else with Lyme and chronic disease, this wasn’t my PLAN!
I am hoping all of you out there are having better days than not. Drop me a comment in regards to this thing I have going on with me mentally if you feel comfortable doing so. I appreciate any and all comments!
Happy weekend, pumpkins – B
Hello out there! Here’s my story for today:
We now have a new insurance; it usually changes every 2-3 years. However, now I cannot have my labwork done at my doctor’s office. I can only use a certain lab that is not available there on location. So, I had to find a lab I could use in my area. Done. No big deal. I had my visit with my doc Thursday and headed to the lab on Friday after work.
I know the medical building where the lab is located because it is in the area, and I have been there before to see another doctor of mine. As I exited the elevator on the 3rd floor, I looked to my right first to see if the lab was on that side of the hallway. BAM! The name if the Infectious Disease doctor I saw before being correctly diagnosed with Lyme Disease, was glaring at me. I started to swell with anger. I wanted to march in there and punch him in the face. Really! I said out loud, “You have to be f***ing kidding me!”. Luckily, no one was in the hall to hear my sailor mouth. My mind started swirling with all kinds of thoughts from that visit I had with him over 19 months ago.
When I was was referred to him by my PCP, it was a last ditch effort on her part. She is my family doctor, and both of us had been trying to get to the bottom of my fatigue, sleep disturbances, nausea, back pain, etc. for the past 3 years, I was in her office about every 4-5 months with symptoms, the worst was the crushing fatigue and every time, I tested positive for an EBV infection. I had been tested for everything and probably twice such as Lupus, Rheumatoid Arthritis, Vitamin D, infection, Thyroid, you name it. For the joint pain and numbness in my feet, I had seen an orthopedic doctor and a neurologist and had had a spinal and brain MRI. Nothing. After about the 5th time testing positive for an EBV infection, I was referred to the OD doctor. What was causing the recurring EBV? All my blood tests for the past 3 years were sent to him as well as any of my medical record from my PCP. He had my whole life in his hands.
By the time I headed to his appointment in the early spring of 2013, I was a complete mess. I was so exhausted, I could barely make it through the day at work. I was in pain much of the time. I was having headaches of which I had never before in my life. I wasn’t sleeping well, I had severe neck and lower back pain, shoulder and hip pain, stiffness, indigestion, nausea, you name it! I also was worried. By this point, I had been ill off and on, with symptoms cycling and becoming worse for the past 3 years. I knew something was really wrong. My PCP had been talking about Fibromyalgia and Chronic Fatigue Syndrome but she wanted to rule out any other options and so I had my appointment with the ID doctor.
Now, I am no sissy pants. I take things as they come, and I am a problem solver. I have always had a crazy awesome work ethic, and I take pride in what I do. At many junctures in my life, I was working 2 jobs. I exercised, and I was social. But in the past year for sure, a lot of that had changed due to my health. I looked forward in a way to this doctor visit because it would assumingly help rule some things out and perhaps even help me find an answer. Let’s just say, I had a lot invested in this visit, and I had faith in my PCP’s referral to this ID doctor.
It was the worst doctor visit I have ever had in my life. Literally. The doctor came in and began asking about why I was there and my symptoms. I explained the EBV activations. He stated several times that EBV is not recurrent and that the odds of this happening were slim to none. Ok. I asked about the blood work showing the EBV infection. Oh, your doctor didn’t run the correct labwork. Everyone shows “exposed” to EBV as mono. Ok. As far as my exhaustion, I needed to relieve some of the stress in my life. Really? For my daily horrible headaches, which I never experienced before, Drink more Water. At this point, I am starting to get aggravated, as much as I can in the exhausted state I am in. For my neck pain? Well, well, you are a woman, so I am sure you carry your purse to one side. Maybe you need an MRI? No, doctor, I just had an MRI this past summer and nothing, NADA, showed up. Lower back pain? Hmm. Right hip pain? Go back to your ortho doc. This went on for about 30 minutes. For every symptom, he had an answer and a stupid one. By the end o the appointment, I was even more confused, angry and emotional than I had been walking in. At the very end, I asked about the soreness all over my body. He pushed on some pressure points and said, Yep, you probably have Fibromyalgia. I asked for a doctor referral. He told me he would not refer me and that I had to go back to my PCP for a referral. OMG!! WTH. Are you kidding me?!?
I cried all the way home. From sheer exhaustion, from getting no answers whatsoever, and from getting no help. I felt so hopeless. I was drowning in all of this unexplained pain and fatigue and there seemed to be no light at the end of the tunnel. Although I drove away angry at him for his condescending manner and his refusal to even so much as take blood, I didn’t realize how terrible he really was until I was actually diagnosed. Two months later, thanks to my researching online and finding a doctor whose specialty is FMS and Chronic Fatigue Syndrome, I tested full blown CDC positive for LYME DISEASE.
So, now, after being in treatment for 18 months and still plugging along, I walked off the elevator and I was taken back to my visit with HIM. I will have to have all of my lab work done there, 4-5 times a year, and I will have to pass his office. I am still trying to understand why this has come back into my path after all of this time; I wonder what I am supposed to make of it. Any suggestions or ideas? I know what I want to do, but it wouldn’t be productive nor healthy for me.
If you think of a productive way I can deal with this doctor, please let me know! I feel like my doing nothing just condones his ignorance and his unbecoming attitude. It feels wrong to do nothing, Like he did to me.
What a week!! I thought there about Tuesday and Wednesday that I wouldn’t make it, but guess what? I did! I wonder at what costs though. I say this because I have been struggling all weekend with symptoms. Most aggravating is the all over soreness and pain. Then, there are the IBS issues. And then the indigestion issues. All of this hit me on Friday at school, and it hasn’t let up. NO MERCY!
Without TMI, I just feel all over terrible. If I can get one issue to subside, another flares up. I have tried epsom salt baths, resting, pain pills, alka selzer gold, heating pads, gingerale, tea…..nothing, nada. I am pretty sure this is what is mean by herxing! I have tried taking my mind off the total uncomfortableness of being me by reading, Facebook, grading essays, playing Candy Crush, watching Netflix. Alas, I just can’t get out of myself enough to feel better.
I missed an event last night, a family event, and so that was tough. Then, today, my husband is working on his new shop area and of course, I am in no shape to help. Instead, my 60+ year old in laws are slaving out there. I feel so useless. It all hit me this morning in the shower, which was a chore in and of itself, and I just gave in and started crying. I do have meltdowns like this every so often but it’s been awhile. I do not like it when this happens because I feel so helpless. I feel like I have lost some pieces of me that I may never get back. I feel like I am at the edge of a cliff, teetering, looking into a vastness, a place where nothing changes and I just continue to struggle every day.
I know deep down that this is just a culmination of being exhausted, stressed, and depressed. I guess being aware of all of these things helps? My husband says that it is a good thing to have a meltdown every now and then, to grieve about this illness. And, for the most part, I do feel better after my little meltdowns. How do you deal with all of the stress and symptoms of Lyme disease? Any tricks you can share with us? I think I need some Kid President today.
Off to a nap. Peace – B
“Well, I woke up Sunday morning, with no way to hold my head that didn’t hurt…” – Kris Kristofferson
Up and at ’em, kind of early this morning. I honestly feel like I have a hangover. However, no alcohol was consumed. Scout’s honor! Not one drop! Lyme seems to suck the fun out of everything. Just a disclaimer: before Lyme, I did enjoy having a couple drinks on the weekends. My favs included white wine, and in the summer, some beers. But all of that has come to a complete halt as of, or even before, my official Lyme diagnosis. My body cannot handle alcohol.
On one hand, we can chalk that up to a Plus. On the other, it really does suck that I sincerely cannot have even one drink without feeling like a truck has run me over. Sometimes, like today, I feel like a truck has run me over anyways. Fun. A couple of reasons to stay away from adult beverages as a lymie is one, the sugar. The bacteria feed off of the sugar and LOVE IT! So, let’s work on not giving the bacteria Borrelia burgdorferi or Bb any more ammunition. It already has the upper hand here! And second, many of us are being medicated with antibiotics. Strong stuff too and at high doses. Alcohol can definitely minimize the effectiveness of the meds and again, we don’t want to hinder our ninja fighting machine anymore than what is absolutely necessary. When I do treat myself, and rarely, to a drink, it is something to enjoy. How do you feel after consuming alcohol? Or is there any other foods/drinks that trigger symptoms for you?