Tag Archives: chronic fatigue

By loving I am staying alive…

“Here I am, rumbling along in my pigpen of emotions, lost on my sofa for eons now, feeling inadequate in so many vital ways. I’ve lost a sense of myself. It’s unnerving to feel adrift and unmoored from the natural grounding forces of my work, marriage and society. Many hours waffle by where I am reeling in confusion… Loving is about all I have left that I can do. Or so it seems. Patiently, I listen to all that goes on in their days. I listen to what is in their hearts and on their minds. This I can do readily and in peace… By loving I am staying alive… If I can’t trust that I’ll get well, if I can’t trust that I’m a valid person by the mere fact of just being me, at least I can trust that I’m still good at loving.” -Out of the Woods, by Katina Makris Pg. 131

I have been reading this book for a month now, and I’m only halfway through. Partly due to how foggy and full of cotton my brain has been lately, I find it almost impossible to read most days and end up just setting the book down and staring at the wall instead; but also partly because it has been a very tough book for me to read.

The book chronicles the authors battle with chronic Lyme disease, and is so well written that it is physically painful for me to read at times. I’ve been there. I’ve felt that. I remember how much that hurts. I feel that way right now. I am all too familiar with that dark, fearful despair. I know that hopelessness.

I feel as though I am feeling every pain and emotion through the pages of the book. Don’t get me wrong, it’s a wonderful book, and I think anyone who knows someone with Lyme disease should read it, as the author does such an amazing job of painting the picture of just how isolating and hopeless and scary this disease is. But be forewarned, if you are ill yourself, it’s tough.

For some reason this passage got to me, in both a happy and a sad way. It says exactly how I feel, only much more eloquently than I could ever say it.

I don’t know who or what I am. I don’t know what I’m doing with my life. I don’t know if I’ll ever get well. I don’t know if I even exist outside of this disease. But I do know that I am good at loving .

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Dear antibiotics; I think we need a break…

It has been 10 weeks now since I was diagnosed with lyme disease and began treatment, so here’s an update.

At the beginning I herxed a little from the antibiotics, very normal albeit unpleasant. It passed quickly each time and wasn’t anything I couldn’t cope with. Then things started falling apart, I started falling apart.

I had bipolar mood swings despite being well “stabilized” on my meds , the worst acne I’ve ever had in my life, the worst insomnia I’ve ever had, pain, blood pooling, heart palpitations, pre-syncope (almost passing out), and major major fatigue, SO much fatigue and weakness that there were many days where I could barely walk! None of these were new symptoms for me, just much much worse than usual or rearing their ugly heads when I hadn’t had to deal with them in a long time.

I’ll admit, I freaked a little. I knew it would be hard, I knew what I was getting into, but this was not it!

So I talked to friends who have been doing this a lot longer than I have, and ran in to my doctor at a fundraiser and mentioned it to her (and showed her, since that day I couldn’t walk more than a few steps at a time!), and every one agreed that I should take a break from my antibiotics. I really didn’t want to, so I debated for a few weeks, until I finally made up my mind to try it.

What convinced me was that I kept saying “if I knew this was herxing I could cope with it a lot better, but I don’t think it is” and a friend finally said “just take a break from the antibiotics, if things get better then you know it’s herxing!”.

So after 11 days off, I think my verdict is this:

Mood swings = herxing

Blood pooling, pre-syncope, palpitations = yet to be determined condition (undergoing a million different tests over the next couple of weeks, so we shall see)

Insomnia = lyme symptom but doesn’t seem to be related to antibiotics. However it does seem to be retreating with help from some supplements my doctor suggested :]

Pain, fatigue, weakness and walking problems = typical ME crap, perhaps maybe made a little worse by herxing. I haven’t had any trouble walking since being off of antibiotics, but it comes and goes, so that’s inconclusive. :/

Over the days off of antibiotics, my pain was off the charts…I find that an interesting tidbit of info, that I’m not really sure what it means yet, but after 2 days back ON antibiotics it is not any better. :[

Interesting as all of that is, I still don’t really have an answer; and now I’m scared starting antibiotics again that it’s only a matter of time before I’m getting worse again.

I have learned over the many years that I have been sick, and especially recently, to trust my instincts. I know my body, better than anyone else, and when my instincts talk I listen. Right now, my instincts are screaming that something isn’t right…I just have to figure out what it is.

There is a missing puzzle piece, or maybe several, and until I figure it out I think I am going to continue to have problems.

I am so tired of worrying about this.

 

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Pity party time

I don’t do this often, but tonight I am going to let myself.

This sucks.

I’m sick of feeling this way.
I’m sick of spending my evenings boiling coffee (see here for an explanation of that statement) and taking pills instead of out doing fun things like people my age should be.
I’m sick of spending more time in doctors offices than I do with my family (my ex husband used to hate that).
I’m sick of the pain. So much pain I don’t have words to describe it. The best I can do is brain numbing, gut wrenching, cant think about anything else, pain. It makes me want to cry, and throw up, and lay down right where i am and curl up in the fetal position and die. <—- I’m sick of that.
I’m sick of my body tic-ing uncontrollably, at the most inconvenient times.
I’m sick of worrying.
I’m sick of being scared to go on with my life; sick of doubting my abilities to do what I want to do.

I’m just sick, and tired; and sick and tired of it all.

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Birthdays and validation

So yesterday was my birthday; I didn’t do anything super major, but it was still a nice weekend. 

Saturday I went to the beach, regardless of a little rain and a lot of clouds. My friend and I had a nice lunch, laid on the sand and talked, got some sun in spite of all the clouds, and then had a quick dinner on the way home. She also brought me a lovely bunch of flowers, a gift certificate to our favorite gluten free/vegan bakery, a very sweet card, and a cute unique gift. See…

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This adorable box had a note in it that said “The legend of the Dreambox suggests writing down your fondest dream, greatest desire, strongest wish on a small piece of paper, and placing it beside your bed. Every evening as you retire, and every morning as you rise, hold your Dreambox and think on your dream, believing with all your heart that it is so. Legend has it, if done faithfully…your dream will come true.”

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Isn’t that sweet? 

Many sweet friends also wished me happy birthday from cyberspace…including this e-card that made me smile…

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Then last night I had coffee with a wonderful friend who I, ironically, went to high school with but wasn’t close to then, and who recently has become one of my closest friends after we ran into each other on an online lyme disease support group. It was wonderful to spend time with her as we are both usually to sick or busy to get together.

She gave me probably the best birthday present anyone could have given me…she heard me. We talked for hours as we drank our coffee, and in the course of this conversation I told her how I’ve been feeling lately; as though something is very wrong, that I am not on the right path with my health and my gut instincts are screaming at me to fix it, and quick! But that I have no idea HOW to fix it. Something I have said to several other people recently and gotten answers like “you’re supposed to feel worse before you get better”, and “it’s just herxing, it’s normal”, etc.

However, she simply looked at me and said “I totally get it“.

I can’t explain how nice it was to simply have someone validate how I am feeling, instead of telling me that it’s no big deal, or normal, or I’m freaking out over nothing (which is what I feel like I’ve been hearing, albeit in different words).

Just to have someone say “I get it. I’ve been there too, I am there right now too. You will figure this out. You are strong, and smart, and you know your body. If you say something is wrong, then something is wrong.”…there are no words for how much that helps me right now. ❤

There are only 3 days until my dad gets here; he is only coming for like 2 days, and just to help me move, but regardless I can’t wait to see him. So when he gets here we will have a family birthday dinner (minus my mom who isn’t coming 😦 ) with gluten free/vegan cupcakes for dessert of course! 🙂 

All in all, a satisfactory birthday…although I won’t lie, it makes me sad. I couldn’t help thinking of how my husband and I would have been celebrating together, especially since he didn’t even bother to text me “happy birthday”. I couldn’t help missing the family birthday dinners we used to have before my parents moved away. I couldn’t help wishing my best friend wasn’t 2 hours away. I couldn’t help feeling angry/let down that my other “best friend” who has been talking for months about planning something to celebrate my birthday, chose to spend the weekend with her boyfriend instead, and simply sent me a text message last night. I couldn’t help feeling sad over where I am in life, because it is so not where I wanted to be at 25. 

But I am incredibly grateful for the wonderful friends who did make my birthday special (even if they weren’t the friends I expected), I am a lucky girl. ❤

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New patient paperwork fun…

As I am sure a lot of you can sympathize with…I absolutely despise new patient paperwork. I can’t tell you how many times I have filled these stupid things out; it always takes me forever and completely wears out my right hand/arm. Not to mention, there’s nothing like have to go through pages of check boxes and mark everything that’s wrong with you to make a girl feel like she’s dying or something. I don’t have the energy to count, but I’m pretty sure I checked more “yes” boxes than “no” boxes this time around. :/ 

Note: I marked “yes” for more lyme disease symptoms today than I did before starting treatment…isn’t that lovely. Image

 

And this isn’t even including the other 6 pages of biographical info and ridiculous amounts of family history I just filled out (I mean, who seriously knows all of the medical problems their grandparents have/had?!) 

And don’t even get me started on the medication list!! Mine takes a whole sheet of paper, front and back now! 

At least this doctor’s office is thorough…let’s hope they are that thorough when it comes to running diagnostic tests! 

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The truth is…

People like to tell me that I’m strong, brave, inspiring…it means the world to me, really, but I just don’t believe it. I’m not anything special, I’m just here doing what anyone else would do in my shoes…the best I can do with what I’ve been given. 

And the truth is, I’m really not strong, or brave, and I’m definitely not inspiring. 

I’m scared, and I’m weak; I’m sad, and I’m alone…and I’m done. 

You know what I did tonight? I sat in the shower, after a quick 5 minute shower done sitting in a shower chair, and cried for a longggg time because I couldn’t get out. I couldn’t move, I couldn’t breathe, I could barely even cry. I felt like I was dying, and I really wished I was.

I’m not sure why I’m using past tense here…I still feel all of those ways. 

It took me over an hour to get out of the shower, dressed, teeth brushed, pills taken, and in to bed. Tasks that should take me like 10 minutes total. 

Now I’m laying here in bed, barely able to move more than my fingers (thank goodness I can still move those!), in agonizing pain. It hurts to breathe, it hurts to think, it hurts to be alive. My legs feel like they are literally dead (happens every time I lay down lately, sounds fun right?), my head is pounding, my face feels like someone beat it to a pulp, and my back aches so badly I have no words to describe it. 

Yet this morning? I was fine. I made a bunch of phone calls, checked things off my to-do list, had a good day at work, was even in a fairly good mood…and then I crashed. 

I want off this roller coaster ride of “ok” days and horrible days. 

I don’t want to feel like this. 

I don’t want to do this anymore. 

See? Told you. 

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Crazy. Crazy. Crazy.

This treatment, or maybe it’s the disease, is really screwing with my brain lately. Or maybe I’m just crazy…that’s an entirely likely possibility… I’ve been told treatment can do this, but honestly who fucking knows what’s what anymore. 

I’m a happy person, a positive person, a calm even in the face of a storm type of person…but apparently not anymore! Now I am a moody, melancholy, down, stressed, sad, everything sucks type of person. I hate that. 

I feel like it is slowly chipping away at what makes me, ME. (See, there I go again being all melancholy and negative!)

My moods flip out of nowhere, but it’s not exactly like a bipolar mood swing because those I’m used to. It’s more like I will be ok, content, my usual self…and then out of nowhere, BAM! Sad. Or angry. Or lonely. Or depressed. (You get the picture).

I feel so terribly alone, even though I know I’m not…I have family, and really wonderful friends. I guess talking to, or being around, other people helps keep me me by warding off the melancholy.  The problem is, other people have lives…they can’t just babysit me all the time to keep me sane, and I don’t want them to have to. I don’t want to tell people that I am so needy lately because I feel like this. I don’t want to be a burden. 

Maybe I just need sleep…but I’m probably just crazy. 

 

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Downhill?

To understand this post you have to understand my history with “downhill”…it has happened to me quite a few times over the years that I have been sick where for whatever reason I go suddenly and severely downhill. I used to call them “flares” when my diagnosis was fibromyalgia, now with lyme I have no idea what to call them anymore…still “flares”?

I also used to go to my doctor and tell her “I’m flaring” and I would walk out with a prescription for steroids, painkillers, or whatever else she thought would help “pull me out of it”. Sometimes it helped, sometimes it didn’t.

No two “downhills” were ever the same either; sometimes it was pain, sometimes fatigue or other symptoms…and sometimes it was much worse than other times. Once, my senior year in high school, downhill meant 2 months in a wheelchair in massive amounts of pain and so much brain fog that I don’t remember most of that period of time. The most recent downhill meant so much pain I ended up on daily oxycontin and was still so miserable I couldn’t function; it meant months of barely functioning, barely getting out of bed, every single symptom intensifying a LOT, and getting to the lowest point mentally that I have ever been…I was convinced that by now (5 months later) I would be housebound and applying for disability. All of that in spite of the massive doses of steroids my doctor threw at me, and the highest pain killer I have ever been on. (now I know the steroids probably made things much worse, too bad I didn’t know that then :/ )

So now maybe you will have a little bit of an idea of what I mean when I say this…

I feel like I am going downhill.

I know, I know…”It’s probably a herx”. (Please don’t say that to me right now)

Not everything is a herx, and herx just doesn’t make sense in this situation. Not to mention my instincts say this is downhill, and they are usually right.

It sucks. It’s like standing at the edge of a cliff blindfolded, knowing someone is about to push you off, but not having any idea of how far you have to fall or what is at the bottom. Yeah, told you it sucks.

I can’t sleep, can’t breathe, can’t move; I feel like I need to cry or throw up or both. My body feels like I did 300 squats and then someone beat the crap out of me. I’m laying in bed and the entire room is spinning around me and I think my head may explode. I managed to take a shower without collapsing tonight, but just barely and it was old-lady-style…thank goodness for shower chairs and bars to hold on to! I feel so miserable I just want to scream, but I definitely don’t have the energy for that! I barely have the energy to type, it’s wearing me out so much, so this post is almost over for sure.

Yes, if this continues I will be calling my LLMD, so relax.

I hate that this is my life, going from downhill to downhill, and spending the time in between waiting for and worrying about when the next one will strike.

Lyme disease freaking sucks.

Crap. The bathroom is entirely way too far away. :[

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Ointment for the soul

Today, on my only day off for rest, I decided that my soul was in need of some soothing. So I put on my sexy yoga pants and baggy T-shirt, and headed for the nearest craft store (what else would I do to soothe my soul, of course?), where I spent a good hour wandering every aisle relishing how nice it was to be able to do so without a husband tailing me and complaining “can we GO yet?”. Another baby step in learning to enjoy my solitude accomplished…

I found a couple of projects to work on, which will keep me busy for a while. I find that I often have a hard time staying in bed, even when I desperately need to, as I get bored and feel lazy laying around doing nothing; so I learned a long time ago that having a project to keep my hands busy helps with that problem. Not to mention that there is just something incredibly soothing about sitting down and creating something from nothing, from beginning to end. 

The only downside is that I may say now that crafting and creating is soothing, until I get halfway through a project and it is frustrating me so that I am screaming at it…happens every time. In the end it is yet another lesson in perseverance I suppose…

Wish me luck and if these are successful projects I will post pictures of the results! 

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Knowing my body…

Just because I know my body, doesn’t mean I always like her. Sometimes I feel down right betrayed by her. How dare she have the nerve to look like a perfectly healthy young woman, yet feel like an 87 year old grandma. That’s just not fair.

And then there is the ever present battle inside the chronically ill patient; my mind tells me I want to do something, and that I should, but my body and past experience tells me that I will majorly regret it if I try.

I’ve felt pretty good recently too good. So naturally my brain starts in with “maybe you could try to_____” or “if you just took it really easy…”

But I’ve been down that road before, I’ve taken the chance and reallly regretted it. And then my body decides to drive the message home (just in case I was actually thinking of doing something) with a few days of feeling really crappy and completely out of control of my own body…just to make sure I remember that I am actually not in charge here. :[

So this sequence of thoughts always leaves me feeling down, remembering all of the things I used to be able to do but can’t anymore.

For example, I used to train in martial arts (Tae Kwon Do); I have a 4th degree black belt that took me close to 13 years to earn, as well as an instructorship position, referee certification, and awards from having competed at both the state and national levels. Now I haven’t trained in several years, and can barely make it through the grocery store without wanting to collapse. My two younger sisters, for some strange reason, have decided to take up karate (they’re bored, and crazy lol)…so all of a sudden ALL they talk about is karate this, and karate that. Recently at a family dinner they were going on and on (and ON!) about it, and it got me thinking, “maybe I COULD do that again?” I miss it so much more than I can explain; it is the one thing that I light up when I talk about, and I can talk for hours and hours about it! So I started to get excited; I thought maybe I’ll pull out my uniform, do a little training alone so I can take it as slow as I need to. I can do this!

But nooooo…my body decided I needed knocked down a few pegs. I was getting a little too energetic and optimistic. So it decided to not let me get a decent nights sleep for several weeks now, plus increase my fatigue and pain, and oh let’s throw in some major motor tics too (just in case I started to think I actually had control over my own body!) Not to mention a POTS flare up and some random blood sugar drops, just for good measure.

Thanks body, love you too. :/

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