Chronic Illness and Tests

Do tests make everyone with chronic illness angry, or is it just bad ol' attitude me? 

I know I should be grateful.  Grateful for the opportunity for testing, for the chance to improve my health based on personal results.  Living somewhere where testing is accessible. Having the means to do the tests. An amazing gift.  Yet, why is there still this all-encompassing psycho rage that rears its ugly head every time my doctor orders tests?  I have to force myself to be civil and act happy, like woohoo, can't wait to see what this one tells us!  ... right. 

The last two weeks I have been in to the lab for bloodwork 3 different times, done a scan at a different clinic, and completed two different urine tests. This equates to dearest husband driving me for testing purposes 5 times in the last couple of weeks.  The whole family has to get up earlier, the morning schedule is thrown off, so he can drop me at labs before he drops the kids at school.  And then of course pick me up afterwards and be late for work himself. Work he is paid for by the hour.  Sigh. And there are still more to do.

When results come in, they are usually a disappointing combo of either normal or way off-normal.  The normal ones of course should reassure me, but instead make me mad that I wasted everyone's time (let's not even get into the money!).  Then the off-normal ones usually lead to another round of tests... or more money on more meds or more supplements... stuff I have doubts will help and may make me sick if I react to them as I often do.   And I get mad all over again. I just want to be left alone!  I don't want to try anything else!  Make it stop!  ARGHHHHHHHHHHHHHHHHHH!!

I suspect the truth of the situation is that I'm simply frustrated with being sick.  Feeling at the end of my rope near the end of a long, cold, bitter winter. Wishing the money we spent on this stuff and then further required tests, meds or supplements, could be spent on something fun instead.  Wishing we could have a family vacation.  Wishing I could buy something fun for the kids or the house or go out to dinner. Wishing really for just a little break, somewhere.  A little tiny one. Anywhere??? Please???

Still going... and being made fun of

Well, a week later and I'm still going on the 30 drops of the houttunyia and enula.  And herxing in a way that's turning me into more of a cray cray person than I usually am.  It's not nice.  It's making me mad.  Why am I still herxing so bad?????????

But... in all this awful sick-o madness, I can still find some gratitude.  Gratitude that I have been well enough - for long enough - to even be able to feel the difference.

I used to feel this bad all the time.  Tired, bone tired, like my head is a massive boulder tired and my body cannot be pried out of bed no matter how hard I try.  "Sick tired"!  (LOVE this post on 'sick tired' - describes tick borne illness fatigue incredibly well!) I actually used to feel much worse than this. So, it's super fantabulous good news really. (I remind myself of this frequently!)

But my attitude in general is extra pissy!  Dear hubbie came home from work the other day and my daughter told him, eying me up sideways, "She has been like this all day!  Complaining, whining.  I feel so bad.  I'm so tired.  I have to lie down.  AGAIN!".   She was right on the money about it all too. In my defense, I felt I held it together pretty well for getting them fed, out the door when I needed to, etc, etc.  All the little things you do that add up quickly to hours of work but that your kids don't even notice.  However, in between all that, I may just have complained several times.  It was actually pretty funny how she called me on it.

(HA!  I also have gratitude for when my kids make fun of me!!!)

However, it's been a month and a half on the same freakin' rotation and here I am herxing and herxing.  Up all night for a couple of nights in a row now too.  That twitchy bugs-crawling-all-over-you restless but exhausted feeling lasting until the wee hours of the morning.  Finally falling into blessed sleep only to have to awaken a couple of hours later to start up on all the sweet meds that are doing this to me... yet again.

Healing me.  Healing me!

Anyhow, there it is.  I am grumpy.  I am sick tired.  I am in need of an attitude change apparently.  My family is once again out enjoying the summer without me because I'm too sick to pull myself out of bed for any length of time.  (See, whiny lady!!) 

There is that gratitude though.  And I'm a little proud of myself too.  Proud of how I went through literally years of feeling this bad (worse) while sucking it up as much as possible and pushing through with a postive attitude for the most part.  Between the hours filled with worries and fear.  Learning to keep faith.  Learning to look at this minute, not the future.  Remembering to look at what I have now - and what I can do with that - versus looking at what I think I may have lost.

So, once again, I will not focus on the boredom or frustration, but will consciously relax as much as my anxious and twitchy body will let me.  Into the soft bed.  Into the pillows.  Breathing into the tight muscles and letting go of the headaches and body aches. I will enjoy the peace and quiet of a house to myself.  Look forward to the stories brought back to me from the world by my family. 

fabulous biking, no progress on the drops

Here I am almost a week after my last post and I have not been able to increase my Cowden antimicrobial rotation drops at all.  I'm still at 28 drops!

Symptoms seem a bit stronger than earlier too.  But I'm not sure.  How can you be sure when there are so many symptoms in your body and they are so strong, yet so subtle.  I say 'subtle' because I am convinced I ignore most of what is going on symptom-wise most of the time.  This isn't to say that I don't take care of my body (+ mind + spirit!) in the absolute best way I know how on any given day.  But if I focused on the symptoms, I have little doubt that I would go out of my mind with frustration and suffering.

On second thought, I may have actually already gone out of my mind with frustration and suffering even without focusing on them.  HA!

Anyhow, is a week at 28 drops okay????  Am I doing this wrong?????  When will I feel well enough, confident enough, to increase again?  How many freaking weeks will it take me to get to 30 drops???? I can't know.  So I just keep moving forward (or not, HA again!) day by day.  We have been on short little bike rides every day or two.  Still 100% in love with it.  I can only ride on smooth pathways - bumpy roads are agonizing.  But we live near a gorgeous bike path next to a river.  So, how about that awesomeness??!!  Lucky.  But what I mean to say when I talk about the bike is that maybe it's not the 28 drops, but rather the new activity that is keeping me at this level of meds.  Maybe it's a combo.  Maybe the biking has nothing to do with it.  Again, who knows?

Grateful for the tandem bike loan.  Grateful for the bike path.  Grateful I have a husband who is willing to do all the work on the bike - essentially towing me along until someday I have regained the endurance, strength, balance and judgement to be able to ride on my own again.  Grateful I can bike alongside the kids for the first time in half of their lives. Grateful that it doesn't matter if I ever get that well again - I can still bike!

And hoping that these days of 28 drops on Houttunyia and Enula are doing great, great things in my body.

Summer heat and the best Houttunyia/Enula rotation ever

It's been warm warm weather the last several days and I am in love with it.  Temps have been close to 30 degrees with a humidex closer to 40.  It feels so good to my body.  I'm not bundled up in a tonne of layers all the time - and still freezing.

I'm also doing fabulously well on this Cowden rotation!  As I mentioned in my last post, the Houttunyia and Enula are usually my roughest rotation.  Not usually actually - always.  I've just hit 26 drops and am feeling pretty decent. Relatively speaking of course.

The agitation and wanting to hyperventilate feelings seem to have passed for the most part too.  I don't feel completely settled and grounded, but it's way better.  I can nap more easily again.  My energy is such that I do have to sit and lie down for brief periods in the late afternoons and evenings, but not so bad that I'm in bed from dinner onwards.  I don't even want to be.

It's blowing-my-mind incredible. :)

So there is my update - I'm doing the best I have done in years and the hot weather is probably helping too.  My only concern centers around thoughts that perhaps I am going too slow on this rotation - taking too much time to ramp up the dosage.  I need to get to 30 drops and I'm already at 24 days.  If I followed the Protocol directions perfectly I would already be on my next antimicrobial rotation.

But that's what I have done for over 2 years.  And herxed like crazy the whole time.  My LLMD says I can try this as long as I still keep getting better.  I don't know how long it will take to know.  Willing to give it a few months to experiment though.

Out of town guests when you're sick

Hubbie and I slept in a few extra minutes this weekend morn, but there's not much sleeping in to be had when there are rounds of meds to be taken. And when your best energy is first thing in the morning. I wanted to get up and properly nourish myself and then make both breakfast and dinner so my guests would be properly taken care of, for today.

Well, more or less.

What do you do when you're chronically ill and there are guests to be entertained and cared for? I default to making sure they are fed, and then chat as much as I can, while resting in between. This works out okay... I hope.  I'm okay.  I'm too tired but I cope. I am so grateful to have people who love us take the time out of their schedules to travel and hang out with us. I end up feeling guilty about being a poor hostess though. Who goes back to bed right after their guests have risen for the day and been fed breakfast? It feels weird.

I'm working on acceptance and losing the guilt. It's far from how I would ideally entertain, but it's pretty darn great for our current circumstances. Which means it is perfect for today. Not so different for someone who isn't ill and is hosting. You do your best and let love take care of the rest.