Sunday, May 15, 2016

Day 4 - Recovery Day

What goes up must come down and for today that refers to my optimism, not me hiking up a mountain.  I think its time to admit the herxes have settled in.  This was a new term for me that refers to the Jarisch-Herxheimer reactions that are detox symptoms as the bacteria are killed off and the body tries to deal with that.  I was told they could be quite substantial with the antibiotics and I am sure they were, but I was just so sick on the antibiotics, I was unsure what was the real cause.

With herxes you can experience many symptoms and of course, they are different for everyone.  For the last couple of days I have had major headaches and not like your typical headache, these were full head tightness and pain.  It also made me feel like my whole head was shrinking and squashing me.  I like to think it was the inflammation starting to go down.  So that is what I tell myself is happening.

The other symptom was itchiness in the legs like nothing I have ever experienced. Not just one spot, but the whole leg and only at night.  You think they are dry but thats not the problem, you just rub and rub until they are red, but that was much better last night.

However, the rest has settled in and I know they too will pass, like: constant nausea, joint pain, swelling (especially in my face), sore throat, muscle pain (from a 10 min workout - sheesh), weakness and fatigue. My balance is very bad today which comes from the dizziness I guess, which also seems to trigger the paralysis in my left arm.  Its weird because you still have use of your arm and it feel like it functions properly, it just feels kind of weak and you find out it is not as coordinated as your mind thinks it is.

This reminds me of the day Haley and I were grocery shopping just before I realized (or admitted) there was a problem. I kept trying to to put something on the belt with my left hand and it kept falling out of my hand before I could get it there.  I think it was on the third try, the cashier leaned over and said "not a good day to buy eggs".  She made me laugh that day.  I didn't think it was a big deal because I  am generally pretty clumsy, but after it did make me realize, it isn't as normal as I like to pretend it is.  Anyway, I can say "today is not a good day to buy eggs".  lol

I know Elanda called because she wants to keep me preoccupied and upbeat.  They are really good at keeping an eye on your mental status.  Even during hyperthermy, they keep you talking so you don't focus on the high temperature and can tolerate it longer.  They are very good at that.  They also know that depression is a key challenge with herxheimer reactions.  From things I have read that builds over weeks.  But since the antibiotics cause detox and herxes, I technically have been in this mode for a month now, so I think that is a good sign.

Quite frankly, I think I battled depression more before my diagnosis for two reasons:
1) With everyone telling you, you are okay (including yourself) you realize the "okay" version of you does not have a very good future ahead.  I remember thinking if this is okay and this is me for the rest of my life, what becomes of my life.  Looking at it now with a clearer head, I realize it was not even close to okay.  That I should have yelled and screamed "this is not okay in the least".  But I didn't see it clearly then, and I really did believe I would have to make it okay.

2) Lyme disease take away everything you love, but just enough to make it miserable but not enough to really realize you can't do it.  The things I love have always kept me sane (thats a relative term) as sane as is possible for me lol.  When you don't have energy to do things with the people you love, activity and exercise become an impossibility, and writing is just a disaster, you can't spell, type or form thoughts.  That to me, was depression.  

Admittedly it became a bit of a roller coaster ride on the antibiotics, because right away I gained some clarity and that quickly faded as I started to deal with side effects and herxes.  My hope of getting my life back seemed so far away.  And well, patience is not a strong characteristic of mine.  Three more years feeling that way seemed like a really long time.  I had already wasted three years battling this and to imagine three more, was miserable.  I wanted to start doing things with my husband and kids again and exercise again...but it seemed so far away. And then the daunting thought of battling this forever.

As much as I know I have a way to go, I feel I have regained significant headway with the things I love.  A few days in the gym, writing to all of you and hearing from all of you, makes me know I have come miles.  A few short months ago, this post would've been an impossibility.  So, I don't worry about depression.  I really feel I can see the light at the end of the tunnel.  As sick as I feel today, I don't feel I am sick any longer.  I am just feeling sick right now.  That feels good.  

As part of my plan today, I want to start a list of symptoms.  I think this would have been most help to me.  The lists online do not properly reflect what people are actually experiencing and if you get a list from either of the two American clinics I have been to, the full list of symptoms is shocking.  Many symptoms I had, I did not even recognize as issues, until I realized they were commonly associated with Lyme.  Some of which the specialists found, but did not consider significant.  Each one on its own can be nothing.  All together, they are hell. And the Herxes allow you to relive some of them all over again.  So no time like the present to get that list started!

Here's to better days ahead...not just for me but for anyone who encounters the bastards.

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