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. 

maybe too fast, but I did it

Since I wrote a week and a half ago, I have increased my Cowden drops from 28 to 29 drops.  And then again, on the full moon, to 30.  I have read that a full moon really brings out the spirochetes and that it is hence a great time to blast them with antimicrobials.  My ssymptoms flared up with the appearance of the full moon anyhow - so, with fear in my heart, I went for it. 

I wasn't actually that scared. It was more like dread.  After two and a half years of this, I don't like big herxes.  The first two years, I herxed almost non-stop.  I think it was necessary - I was that sick.  And I needed to blast the bugs to make progress.  Now, I continue to make progress, but I've slowed down the blasting rate.   I could be at this, treating this disease, for several more years to come.  (And I don't want to think about it if it will actually be for the rest of my life, so I don't - one day at a time!).  And if I can help it, I don't want to be so super sick from the herxing on top of everything the lyme and bartonella are already throwing at me.

So increasing to 30 drops that quickly did end up making me herx.  Badly enough that I had tongue and throat swelling by noon for the last few days, difficulty speaking clearly, massive brain fog, pain, that feeling of bugs crawling all over your skin, exhaustion, irritability, headaches.   And hives.  It's summer and my arms and face do not look pretty right now.

But this is consistently my toughest rotation - the houttunyia and enula - and now I'm finally at the desired 30 drop dosage.  I made it!  I'll go for another week or so and then switch to my next rotation.  Samento and Banderol on the horizon.  I'm excited.  I'll be vacationing in August (staycationing is more like it!) and Samento and Banderol are the meds I've been on the longest.  And that I feel my best on.  Hooray!

Looking forward to it.

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.

building muscle!

I didn't mention this in my last post, but wow is it something I am grateful for - just a wee sign of healing progress really.  But it feels huge to me.

As I mentioned in my previous post, I walked around for 2 hours at an outdoor street festival in my neighbourhood last Sunday.  Then I walked, at a normal pace (oh, the excitement!!!!), all the way home.  20 minutes. 

I've been physically able to walk for 20 minutes at various stages of my recovery.  But not always at a normal pace.  And almost always with considerable body fatigue and stiffness as I arrive back home. I recently actually came across some info about why this could be...  A scientific study out of Newcastle University concluded that CFS/ME patients produce an average of 20 times more acid when they exercise. It is this build up of acid that then makes the body feel sore, with aching muscles that then don't work as well. (More info here: mecfsForums).  Now they didn't study chronic lyme of course - but I wouldn't be surprised if the same thing happens to us - my own experiences indicate that it does.

But the awesome thing about last Sunday is that this did NOT happen after my big wander/walk session.  The crazy, gross pain didn't overwhelm me as it usually does.

Then, the next day, on Monday, my body was a little bit sore.  And on the second day after, Tuesday, quite sore.  But a different sort of sore.  Like after a workout sore!!!!! Despite that I can barely remember how that feels, it was still familiar.  

My friend, who works with a personal trainer regularly, tells me this means I am actually, incredibly, building muscle!  How amazing is that?

I am super crazy happy about this thought.  Am I nearly there????  To the point where my body can actually rebuild muscle?  After years of lying in bed with my muscles atrophying?

YAY!

progress and pauses...

Well, I've hit the threshold of my 'go slow' idea with the Cowden Support Protocol.  I just hit 26 drops on my most recent Cumanda and Mora rotation and I have been herxing for 2 days now.  Red face, swollen glands and throat, wicked headache, body aches, not sleeping well, fatigue, irritability.  Up until now though - up to 25 drops - I was doing pretty well!  As well as I ever do.  I was increasing drops about every 2.5 to 3 days.  Versus every 1.5 to 2 days like I normally try to do.

So...  will the theory still work?  Do I just need to slow down?  Maybe go from 25 to 30 drops by increasing by 1 drop every 3 or 4 days?  I don't know... I will continue to experiment.  I'm not going to drop down to 25 drops to get through this herx though.  I'll wait it out.  Lots of detoxing.  Water, smoothies, green juice, fewer grains, rest.  Grains really seem to trip me up.  Especially at dinner. 

Half an hour after dinner the last 2 nights and I feel terrible.  I don't know if it's from eating - and the extra energy my body must use to digest the food.  Or whether it would happen regardless of eating - as I tend to have symptoms worsen as the day progresses anyhow. 

Doesn't matter.  I'll keep trekking along and see if I can play with this to reduce the herxing.

After mentioning some of this to a friend yesterday, I had her ask me how I do this.  How I get through each day living with chronic lyme disease.  Trying to live while feeling like I have a horrible flu most days.  And just a mild flu on the few and far between excellent days.  I deeply understand the question - the suicide rate for chronic lyme is very high.  It's a hard disease to face day after day, year after year.

And I'm not entirely sure how I do it.  Or if I'm getting better at it. I hope so. There is less panic than during the time I was misdiagnosed, and also less than during the first brutal six months to a year after diagnosis and starting treatment. But I am better physically now than I was then too.  Which makes it easier to keep it together emotionally.

I take things a day at a time.  Because thinking about the future and the past can both freak me out if I am not careful.  There is so much grief, and there are so many unknowns for the future. I do know that I like life and I don't want to give up.  I'm not ready to be done yet.  It's the hardest thing I have ever had to do - facing what feels like endless days (and often endless nights) with symptoms that are very uncomfortable at best and terrifying at their worst.  And of course you never know, one day to the next, what you'll be facing symptom-wise.   Sometimes I can give an educated guess.  But generally they continue to surprise me.

After plenty of thought, I finally realized that this is really no different than what anyone has to face being in a human body here on earth.  None of us know what tomorrow will bring.  Most of us have had difficult times in the past. Most of us are dealing with daily challenges of some sort.

Chronic illness is a unique challenge of course.  And I expect there are both similarities and differences in how all those going through it handle it emotionally.  For me, to get through and not go absolutely cuckoo bananas, I constantly bring my mind back to positives.  To gratitude for what I DO have.  Versus being non-stop upset about the losses.  The losses are constant of course.  From not being able to travel to an important family event, to losing your temper with your kids, gaining control, and losing it again within a span of 3 minutes. Over and over and over.  Thank you lyme rage!

I can't compare myself or my life with anyone else if I want to stay in a good place emotionally - who I used to be, what I want to be, how my friends or neighbours are, how my family is.  It is too hard and makes me feel bad.  So I stay as much as I can in the now and in gratitude.

Today, gratitude includes that my fingers are mostly cooperating to type.  Gratitude that I can share these thoughts in hope that they may ease someone else's journey - just knowing we're not alone - there are others out there going through hard stuff.  Impossible to comprehend hard stuff.  Gratitude that while I can't take my children out to do something today (it's a school PD day), that I can at least sit here in the house with them.  Gratitude they have a mom.  Gratitude for looking out the window at the vibrant colours of the grass, trees and plants in my yard. 

The little stuff that is really the huge stuff.

This is my life right now.  And it's amazing when I choose to let go of the fear and focus directly on the wonder and sheer fun of it. So a lot of the time I do. 

Too tired, but I can!

I'm grateful right now that I'm sitting at the computer on the main floor of our house while homemade granola cooks in the oven.  I need to stir it every 10 minutes.  It's on a timer.

It's 7:00 pm and I'm too tired to be doing this really.  But we have company coming for the weekend, and I try to prep everything (cleaning, shopping lists, yard work, meals, snacks, beverages, laundry, kids' homework, weekend To Dos... you get the idea) beforehand - starting a good week in advance.  All this so that I'm not too wrecked to enjoy their company.  This granola is a little last minute, as they are to be arriving in the next couple of hours.  But I know that I won't be able to do this plus cook breakfast, lunch and dinner tomorrow without being too tried if I put it off until the morning.

(And these sentences might not be making a lot of sense due to the lyme brain fog - apologies!  I can think the thoughts clearly in my head, but by the time I type them I get a little lost sometimes.  My head is fuzzy and it hurts.  My fingers aren't working perfectly on the keyboard.  But both body parts are still getting the job done - yay!).

Usually I get up in the morning and cook anything for the day right off the bat.  First thing.  When my energy is higher.  So I will get up on Saturday morning, take meds, wait, take more meds, lemon water, iodine in water, green juice or smoothie, vitamins, more vitamins, make breakfast for the family (steel cut oats tomorrow morning, with chia raspberry sauce, maple syrup, cinnamon, coconut oil - yum!), more vitamins (!), and then make dinner.  Vegan bobotie with rice for tomorrow (in case you were curious!).  Then I will rest.  Then I will take more meds, more water, and make lunch.  Then I nap.  This is how I structure my days.  It works.  It's great, for what it is of course.

So, yes, I am extremely grateful that I CAN do this.  That it is actually an option to do it.  I am too tired, but it shouldn't make me crash. Not today anyhow.  And I will rest right after this, before they arrive, as well.

I couldn't say this a year ago.  Maybe not even 6 months ago.

Progress.  Great healing progress.

Happy weekend!

Okay not knowing

Turns out it wasn't the NT Factor causing my trouble. Too simple, perhaps?

After deciding late last night to go off this supplement again, I find myself lying in bed once more, 24 hrs later, with yet another pitch red, burning hot face and a headache/gross feeling to match. My throat burns when I swallow. And I have absolutely zero idea as to why.

I've had this happen in the past. A lot. My memory isn't great, but I seem to recall the burning up, fevered face look as a daily occurrence at least for the full first year of treatment. I got used to it. You have to get used to all the crazy symptoms, pretend that they are just normal in their own special way, and get on with whatever you are doing. Which of course is probably mostly just lying in bed trying hard to get through and survive this insane and horrid experience.

But it's just an experience. It too will pass. Someday.

I hope and keep the faith that it really will. And if it doesn't, maybe I can manage that too. I have somehow managed this far.

So I don't know why this is happening again now. And I don't need to. I have come to the point where I am okay with not knowing all the answers. If I happen upon a good guess I will follow through and see what happens. But I no longer go crazy with not knowing. I lie down when my body asks me to rest. And get up again either when I must, or when my body lets me know it is time.

I am so grateful to be in a place, finally, finally, finally, where I am usually okay with not knowing. Peace.

Pillows, big stacks of them

I'm thrilled to say I'm still in a good stretch. Days in a row where I feel as close to normal as I am ever able to, well, for the past several years. Yet strangely, the last couple of nights, my face has been turning sunburnt-red around 8 pm or so. I haven't changed anything in my routine, my supplements, my meds... What is going on???

Typical lyme... Sometimes I can guess why odd symptoms show up, other times I'm pretty darn near 100% sure why, and yet there are too many days where I don't have even the tiniest of clues. Oh well.

I'm loving the big pile of pillows on my bed through this. Supporting my burning head and pitch red face... The weary, inflamed body. Do you ever wonder what must be going on to the tissues inside when your skin is burning up on the outside too? Yikes. I haven't tried to look but I can feel the skin on my back radiating heat like hot summer pavement too.

I won't take a pic of my face. (The mirror is even too much!). But here is the stack of glorious pillows. :)

...
Ah ha! After writing all of this (which of course isn't much, but I'm on an iPad in bed and have not mastered typing on it with any efficiency so it feels like a tonne!), I realize I HAVE added a new supplement. I started taking NT Factor again yesterday. Ooooo, coincides with the change in symptoms too! I was on it before - months ago - and didn't notice any physical change. And it's pricey, so I stopped taking it. But suddenly felt an inkling to try again. (My latest strategy in regards to meds, supplements, therapies, etc. is not to stress but to simply go with my gut while listening as best I can to my body). The promises of NT Factor are incredible - fatigue reduction, energy increases, cells working up to 45% better - check it out here. I have heard of other lyme patients it has helped, and my doctor claimed it's great for chronic fatigue. There are a few bottles left in my cupboard so I thought it was worth another shot.

I don't really want to stop it again.... But am seriously wondering about the intense hot red skin I've got going on. I guess I'll give myself until morning to decide. Back to the pillows....

Good days

I haven't posted in a little while simply because I haven't been lying in bed as much.  How absolutely freakin' fantastic is that?!  This has happened to me a few times now in the nearly 4 years that I have been sick, and 2 years that I have been under treatment.  Literally, a FEW times.  Once last fall, once in December, once in January, and now this last week.

Yippeee skippy, happy days!

I like this.  A crazy lot.

I'm on my best antimicrobial rotation - Samento and Banderol (Cowden Protocol) right now.  The one I have been on the longest.  The one I now herx on the least.  It's my first week on it for this go round and I have been up'ing my dosage very very slowly.  Trying a new idea out...  What if, heaven forbid, I increase my dosage drops at a rate that does not make me herx to the point where I feel brutal all the time?  And the answer to that question is that I honestly don't know.  I love this protocol.  I'm healing.  But I herx nearly all the time and hence am an inflamed, sicko mess nearly all the time.  Pulling myself through the days on sheer willpower, faith, and feigned enthusiasm.  Which are all great - but how about giving myself a break for a bit?

This is what I want to try.  Not much of an experiment when I start out on it with my best rotation.  But, I have to start somewhere and this is the next one up. It doesn't hurt that summer seems to have appeared out of nowhere too.  Snow two weeks ago and 27 degrees today.  Such a relief!

I've still been in bed enough.  The usual nap-time calling my name from 12:30-2:30 each afternoon.  Forcing myself to get up when I wake up.  Bed enticing me to retire for the evening at 7:30 pm or so...  But the time I'm up in between isn't as difficult as usual.  I'm in a better mood because my head isn't spinning and hurting as much.  My body still hurts too, but maybe not as much either.  (I don't know - I tend to ignore it a lot to keep the positive vibe going). I'm more active though.  Doing a bit more, sitting a bit less.  Did some weeding in the garden, took not one, but two walks with my child - even took the dog along which usually I don't have the patience for.  Cooked a bit, cleaned a bit, a few loads of laundry, swept the decks and patio.  Fun, fun, regular person weekend stuff.

I love the good days!

Licorice root tea

Hot sweet herbal tea is hitting the spot right now. Sore throat, chilled body... emotionally in decent shape, surprisingly. But craving some physical comfort. Mmmmm!

Licorice root tea is more than just my fave flavour of herbal tea, it's also healing for the adrenals. I just leave the bag in and it gets so deliciously strong and sweet. Heaven knows my lyme-stressed adrenals can use the nourishment. Although I don't have numbers for that yet. Went to the lab for an 8 am/4 pm cortisol blood test today. (So twice, went to the lab twice in one day... extra extra fun. Would it be okay if I took two numbers from the little paper take-a-number machine first thing in the morning? Puhleeeeeaaase???) Anyhow, I guess I'll find out results soon enough.

In the meantime, I'll be soothed and grateful for this wonderful tea!

***Note: this is not my fave mug. And it's not Christmas time right now, it's April - spring! However, it's by far our largest mug. :)

Hot water bottle

A dear super sweet friend whom I will be forever grateful to picked me up and drove me to kundalini yoga with her today. This is a big, big deal for me. I don't go to yoga. I don't go to the grocery store. As of late, a trek around the block has been nearly out of reach.

It felt so freakily familiar to be in a yoga class ...oddly dream-like too. I clearly remember a pre-lyme time when my body could do such things and loved moving those ways. It wanted almost nothing of the sort today though. Even sitting still and simply imagining the movements was also, for the most part, rejected. So naturally waves of grief repeatedly overtook me as I sat and lay, mostly resting, while the others moved through the poses. No stranger to grieving, I didn't fight it. Let the intensity flow. Watched it rise and fall.

This was interspersed with gorgeous moments where strong, peaceful energy overpowered me and my eyes dripped tears of relief, my chakras buzzed happily away ... thoroughly safe and lost in the loving vibe.

I was in full body lyme pain on the drive home from the wee bits of yoga my body had allowed, and even seemed to welcome, but there was peace in my heart. Went straight to bed. However, the rest I was hoping would restore me didn't come. Rather chills and pain, and then more of that. Hubbie brought me the hot water bottle eventually, and now, finally, a couple of hours later, my body temperature is starting to balance back out. Mmmmm.... Hot water bottle. :)

Not super willing to try getting out of bed soon, although I had planned to help the kids with homework. Pain and chills, headache and sore throat, dry eyes and malaise. Want to find that peace again. Please?

Socks

My hands and feet get ridiculously cold. For no reason. Except maybe that this is Ontario and it has been the longest most brutal and drawn-out winter in years? ... Or it could be the lyme? Or low thyroid? Or genetic? I have actually been like this for as long as I can remember, although I don't think the lyme is helping matters. I spend 90% of my time shivering it seems. Argh!

So my sweetest of hubbies picked me up two luxurious pairs of MEC 100% wool socks. All winter I have layered them on top of my other socks. I keep them handy on the floor beside the bed so I can grab them in the middle of the night too. If both pairs are in the wash at the same time it stresses me out. Need the good socks! Although this usually isn't a problem. With the kids we end up doing laundry several times per week.

Yay for warm fuzzy super socks!

Being heard

Weary and perhaps a touch jaded, (a touch!?), I find myself unusually down this afternoon. An unexpected phone call plus some snail mail ruining what were hopeful expectations for my family's financial wellbeing in the upcoming months. Maybe years. Sigh.

And this on top of general body pain, headaches, insomnia, chills and sweats, teeth and jaw pain, insomnia, difficulty using my hands, and even vision problems all flared up more than usual - for 3 weeks now. Enough already! Although I know it's just the usual lyme fun, really.

So my gratitude for today? A quick phone chat with a sweet and kind hearted friend. She happens to be going through more than enough of her own stuff right now too.

We were both feeling unhinged, overwrought, and burdened with the urge to quickly make everything all better. But that's not how life works... lately it seems anyhow! So instead we shared some worries. Had a few laughs. Mixed things up with sheer bewilderment. There are no clear answers. No answers at all right now actually.

Both situations are still scary and depressing ...but now I'm smiling - just a little smile. I'll take that.

Just being heard can be healing enough for today. I hope she's smiling a little bit too.