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

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The ‘You don’t look sick!’ game

Agreed!!

DDDangerous.com

We’ve all heard this phrase, and it’s a particular pain in the ass of the invisibly chronically ill and a bit of a ‘trigger statement’. There are various witty retorts to it at our disposal however – ‘Yeah and you don’t look stupid…’ and ‘Oh, I’ll try harder next time’ or ‘I know, I’m just so awesome that I can look this way and be chronically ill.’

you dont look sick awesome

Witty comebacks aside, what does ‘sick’ actually look like?

Not having any hair? Plenty of people have alopecia and have no hair and they’re not sick. Celebrities with full on flu still go on chat shows, dosed up with flu meds (amongst other less legal things I’m sure) and once they have their hair and make up done, they look the picture of health. Sometimes people rely on visual clues, if you’re in a wheelchair or on a mobility scooter then you look sick. Except…

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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