First off, I hope everyone had an enjoyable Christmas and that it wasn’t too stressful. Ours was quiet, more quite than usual. Our winter break started Saturday, December 20th, and I had been counting the hours. Not that I dislike my job at all; I was just looking forward to the uninterrupted and unscheduled – mostly – time until returning on January 6th. The past few weeks leading up to the breAk had been wrought with both personal and work drama. More work drama than anything.
The weekend was good and then Monday and Tuesday, I was feeling the best I have felt in months! I had energy, and I was working through my lists at a nice speed! 😁 I thought I was being careful and not pushing it to hard. It was exciting. Then, bam. Party over, sucker! I woke up Christmas Eve with a sore throat, and, well, it’s been all downhill from there. While I was able to cook a turkey that day get all of the gifts wrapped, and although we had a nice romantic dinner, I felt like hell. Christmas day was worse. I literally was in bed all day. Missing a trip to visit and dinner with the wonderful in-laws, I stayed in bed and pondered my life.
I’ve really been trying to be more accepting of my situation and more accepting of my physical limitations, which can change at any given moment as I am sure many of you have experienced. My initial reactions have been to become really upset and disappointed which then leads to stress, then to sadness and depression. The 4 S slope as I have coined it! The stressful, self-indulgent, sad, slippery slope! Down, down, down.
But what I am beginning to realize is that that kind of behaviour sets me back. Making myself go through that rollercoaster changes nothing. I still do not have the energy or I am too sick to attend an event, dinner, baby shower, whatever. It also leaves me much worse off physically and mentally. I need to change my “stinking thinking” as they say in AA.
So, yes, it was indeed disappointing that I could not go to celebrate Christmas at my in-laws as planned. I wanted to spend time with them. Instead, I had a little chat with myself assessing how I felt and thinking and saying, “It will be best for me to stay home today. Between the Lyme and cold infection, I have no business running around today, and that is ok!” While this seems like such a little thing to do, I guess it psychologically gave me permission to stay home without
feeling guilty. My in-laws were gracious as always, but the best thing for me was the kindness I showed myself. I need to practice this much, much more!
While I still have a cold, I am wishing for a speedy recovery so I can still enjoy the rest of our break. How was your Christmas? Anything you would like to share about dealing with Lyme during the holidays?
Wishing you peace and lots of joy – B
Howdy! Hope we are all having some relief! Lately, I have developed a sincere noise sensitivity. At first I thought , oh, I can’t really hear well (although I have never had any issues with my hearing). Then, it was, oh, I am just getting old (although I really am barely middle age). And then, I finally realized that I am having some certain noise sensitivities! This is a newer symptom, and it seems to get worse as I progress in my treatment. I have read about people having both noise and light sensitivities with Lyme, but I have always been very sensitive to light and only just recently am I noticing the noise issues.
Hmm. No bueno! I don’t seem to struggle much when it is a one on one conversation but if the pitch is too high or low, watch out! My poor husband. We get up early for work, about 5:15 a.m. and there are some mornings like today, that I keep telling him to please lower his voice a tad to the point where I can’t even hear him. Then he is like WTH?!?! It’s a weird feeling when this happens. It is almost like the sound travels in my ears directly to my brain and zaps it. My thoughts start jumbling up and my head starts to hurt. Does anyone else have this experience?
Of course, it is waaaaay worse in a crowd, and by crowd, I mean like more than 4 people. Haha! No, really. In a crowd, there are just so many different noises and pitches and inflections. I try to focus on one, but I just can’t. When this happens, I get really frustrated. Some places/situations I have issues: when one person is talking to me at the speed of lightening, talking on the phone, parties, classes, stores. You name it. Pretty much anywhere there is a cacophony. It for sure makes it even more difficult to socialize…..What is “that”, you ask? 🙂
It’s been happening more and more lately so I am going to discuss it with my doctor on the 22nd. However, I am guessing there is nothing that can be done? I mean besides becoming a hermit which I have down except for this silly working thing. I am making light of all of this but it can be really irritating and depressing. Anyone else dealing with this phenomenon and if so, how do you do it without becoming the Grinch, like me?
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.
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
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.
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.
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