Happy Halloween :)

I've switched to my Houttunyia/Enula rotation and it is kicking my butt a bit.  On just 20 drops.  But this is always my roughest rotation so I'm not shocked. Feels like I'm on Benadryl and Red Bull at the same time.  Exhausted but strung out. Feeling drunk in my head when I attempt to converse with anyone. Oh well. So be it.

Nevertheless, I've been on this rotation a few days now and it's getting a little less intense.  Managed a good nap yesterday and a wee one today (unlike the days/nights before - exhausted but pounding heart/wired feeling).  And then yesterday, on Halloween, I made dinner and was also able to totally enjoy handing out candy to all the trick-or-treaters.  Chatted with parents, stood outside and watched the wonder of the night... beautiful, normal-people kind of stuff.

Two hours of trick-or-treaters at the door later, dear hubby and youngest daughter got home lugging a boatload of candy.  This child had never lasted so long in previous years - so she was pretty proud and pretty pumped.  The three of us took some time to catch up on each others' nights and then I ventured out for a little walk.  Time to enjoy all the decorations and cool jack-o-lantern carvings myself!

I strolled slowly around our block, appreciating the Halloween enthusiasm clearly expressed in the neighbourhood, and even had a good chat with a woman I hadn't seen in a few months along the way.

Shortly after I arrived home, my eldest was dropped off - she had been trick-or-treating with her friends in another neighbourhood.  So the mom and I caught up a bit, standing on the front porch in the beautiful night.  It was close to 9pm at this point - and I was still standing!

All in all, I didn't get to bed til around 10:30 and then was too wired to sleep - a combo of everything that went on, but mostly the potent houttunyia!  I finally was able to fall asleep around midnight.

I was tired this morning, but okay.  Really okay.

I like this soooooo much! My hope is high these days!  I may not be out of the woods, but I don't feel like I'm hopelessly lost in the scariest, darkest bits of it any longer.  Lyme can still frighten the pants off me if I think about it enough, but I'm focusing way too much on living to care right now.

But I hope I'm not fooling myself... Uh Oh...

After publishing that last post 5 minutes ago about how well I am doing, I just scanned back over the blog and realized I started my current Cumanda/Mora rotation mid-Sept.  And today, as I type, I'm still on that same rotation and only up to 25 drops.  I started on 20.

So I'm going slow.  Terribly SLOW.  I hope that is okay.  I hope it's not making me feel artificially 'good' when really I should be increasing my drops faster.  But when I do, I herx a tonne.  And as I just mentioned in that last post, my head feels like crap even at this rate. Sigh.

Hmmm.  I don't know.  I think I need to switch out to my next Cowden rotation in the next few days.  6 weeks seems like a long time to be on a single rotation - especially now that I'm on these maintenance rotations.

I will ask my doctor, but I don't think she knows either.  Trial and error.  Just not keen on the error part - this is a long journey without it!

Doing well!

This is the type of post I have read by other lyme bloggers over the course of my illness that I thought I would never perhaps be so lucky to write.  Well, it isn't exactly that post, but it's not so terribly far off to be depressing. ;)

I'm doing well!  I say it's not "exactly that post" as I can't yet make big claims like 'I'm 90% healed!'.  I still cross fingers and aspire to that day.  But right now, I'm healed enough that I am more of a participant in life than not.  The balance has swung so that I'm out of bed and living more than exhausted and in bed and wondering when I'll ever get out again.

I'm no longer out of my mind with boredom from days on end with little but the monotony of pain and fatigue to keep me company. I'm not nearly as grumpy because my head and body aren't screaming at me in that just-below-the-surface agony 24/7. They hurt, but not that bad.

It is so amazing.  I have to say I feel like I have a renewed love of life.  This state of being makes me not want to think about lyme much.  And then I wonder...

Is it a mistake not to think about lyme much when I still have so far to go?  What percentage 'healed' am I? How 'healed' do you need to be before you stop thinking about lyme so much? How do you even start to calculate where you are at anyhow???  Does anyone many years into this journey even have a clue as to what feeling 'normal person good' really feels like? 

My last post, I wrote about how I had just seen a psychic for the first time.  Well, oddly enough, I then had the opportunity to speak with another woman a week later who had medical intuition abilities.  At one point, she 'felt' inside my head and exclaimed that it was awful, the feeling in my head made her want to vomit.   I thought about it and realized yes, the feeling in my head kind of made me want to vomit too... but I mostly ignore it so I don't really notice.  It's more that I think to myself 'Erg... maybe I should sit or lie down for a bit until it subsides a little'.

All that to say, I don't think I have any chance at making an anywhere near accurate guess as to what percentage my healing is at.  However, if I HAD to say for the sake of this post... well, I'd probably say I'm at 70% better or so. 

I'm happy.  I'm making supper some days.  I'm driving my kids to swimming lessons once a week! (10 min drive, but still!). I often will do something every single day of the week taking maybe one or two days mostly in bed to recover.  I still nap every afternoon.  I still feel really bad at various points during my regular days.  But I'm living - I'm living and I absolutely love it!!!!

Spiritual lessons in lyme

Don't get me wrong, I wouldn't wish chronic lyme on my worst enemy.  However, this blog is about gratitude... and I have to say I spend a lot of time contemplating the spiritual gifts or lessons that chronic lyme offers us.

There is little chance I would have learned so much and so quickly in the last 4 years of my life had it continued on its merry way ...without the big lyme crisis blowing everything apart.  I had a good, but full, busy, and quite stressful life - sort of the norm for us North American moms. I had very young children, a full-time highly demanding job.  A home, marriage, social life, pets to take care of too.  I was learning stuff. Dealing with some chaos. But nothing like what came afterwards. ;)

I came across this fabulous post by Laura Bruno a couple of years ago and find it fascinating to this day.  She is a medical intuitive with both friends and a husband with chronic lyme.  She says "Lyme seems to show up like a roto-rooter, forcing people to dig deep and remove ALL blocks to creativity and healing. To the outside world, these people usually look like they have no blocks because they’re moving so effectively through life, but Life has other plans. It’s as though these people came in with a bigger mission than their current lifestyle or world view allows."

I don't know what you think - but for myself - this fits.

Note: I'm not psychic myself in the traditional sense - more of a clairsentient.  Which took me years to discover and was a huge relief when I finally realized it consciously.

Anyhow, I have had two readings this year.  One at the beginning of the year - a New Year's tarot card reading.  And then, just last weekend, I went to a psychic for a quick 15 minute reading.  I've never gone for a psychic reading before.  An intuitive friend of mine felt compelled to go and to bring me along - so, in the spirit of my go-with-the-flow and whatever-the-day brings philosophy, I went.

My New Year's reading was fine.  I was a little scared as I have had tarot readings that predicted things wouldn't go well in the past - and they didn't. They really really didn't! But this time, it was good. And the actual topic of my health did NOT come up.  At all.  Weird.  A relief. The conclusion made at the time was that my health is a non-issue in my life.  Which is confusing as hell on the one hand - as the state of my health is dictating how much I can parent, how little I socialize, how I can't work, the hours I spend each and every day taking meds, supplements, prepping and cooking the right foods, napping, etc! But it makes sense on the other.  I'm on my path... lyme or no lyme... on I go with life. Which has been, for the most part!, what I have been striving for.  Not to be defined by lyme.  But just to live my life.  And take heed of various limitations as I need to.  Just as you would if say you had a bum knee.

And then in my psychic reading, guess what... my health didn't come up either.   And maybe the guy just wasn't very good right?  Not so psychic?  Well, he nailed a lot actually... and I didn't give him anything to go on... in words anyhow.  No questions, no talk about my situation, my family.  Nothing. I just stayed quiet for most of it.  Nodding here and there. He was spot on for a lot for my friend's reading too.

For me, he didn't end up making a lot of predictions though... instead he spent the first half of our session exclaiming a bit over my energy. (And it was only a 15 min session!). He had met only a handful of people like me.  In 25 years of doing readings.  Was amazed at how much I want to learn.  Last life to this life, within this life thus far.  Awakenings I've already had. Interesting.  And whether true or not true - I do wonder if it all goes back to lyme offering up some pretty cool opportunities for those of us pushing to learn a lot in our lives this go round on earth. (If you happen to be the believe-in-reincarnation type). 

So maybe there really is a silver lining.  Well, I know there is. I did have a decent perspective on life before the lyme experience. But with it, I've grown a lot and gone so much deeper.  My true values become clearer with each passing month.  I'm redefining how I want to live my life.  Pretty cool.

Simple entertainment

One of the tasks that has fallen way way way by the wayside since I have been sick is that of washing the sheets on all the beds regularly. How gross! But I can't do it. The kids have loft beds too so it makes it that much harder to strip the beds. 

Solution of course is to have the kids strip and remake their own beds. Reality check downfall to this plan is I have to find the energy to nag them to do it. And oftentimes I dont have that extra bit of fight left in me. Not for sheets anyhow!

I've resolved this issue somewhat by just addressing one bed at a time. No, it's not enough. But yes, it will have to do. For now. And maybe a few more years. ;)

Today, youngest child stripped her bed with no complaining and after the sheets were washed (by me - go mom!), hubby lugged them back up into her room. I asked her to make her bed. She's little, sheets are big, and it's a loft bed. I get it. She tried.

Before she managed to get it done there were various calls for help to her dad.and then in the middle of it all she showed up like this in my room. 

I was resting in bed exhausted from the laundry and supper and the day in general. Nothing like a child in a pillowcase to cheer you up. :)

I heart lyme bloggers! Problems with Lyme tests and IgeneX Western Blot testing instructions

Reading lyme blogs has helped me so very much during this healing journey.  I honestly don't know how I would have managed emotionally without them.  Knowing someone else really understands.  Evidence that you're not actually crazy but that this truly is an experience to hell (and then more hell and then more hell... etc, etc, etc) and back. But you can do it.  Other people do it.  People make it through. The possibility is there.

All that said, I have had Canadian friends ask me how to go about getting tested for lyme in Canada.  Which of course is a big joke because the Canadian testing is flawed.

CanLyme, on their website, states "Evidence suggests that Canada’s Lyme testing methods are flawed. False negative test results are common, especially in the early stages of Lyme. It takes time for antibodies to develop, so early tests often miss the bacteria. Contrary to bureaucratic statements, late stage Lyme disease antibody testing is much less accurate." CanLyme talks a bit more about Canadian testing here. And Dr. Mercola talks about some of the testing issues here.

Nevertheless, I was lucky to come across fantastic instructions for getting tested via a Western Blot test kit for Lyme by IgeneX in the States here. This is so handy to be able to pass along to others who are desperate for testing. Huge thanks to the lovely woman at Lymed Out who took the time to write directions up so clearly! :)

Happiness Habits

I came across this article today on the habits of supremely happy people.  Friends and acquaintances have asked me on a number of occasions how I stay so positive in the face of a nasty illness like chronic lyme.  I am honest and tell them I am truly not so positive every minute of every day and that there are days where I cry and cry.  Days where I am in a rage.  Moments where I am fine and then the next I am in a rage.  It's lyme, right?  Extremely unpredictable emotionally as well as physically. Yay! ;)

Nevertheless, since day one from diagnosis... well, okay... maybe month two or three or five after a whole lot of major freaking out :) ...  I decided that literally the only way for me to survive this experience was to be as positive as I could.  I was scared to lose my life, but the more immediate fear was to first lose my mind. So I promised myself to constantly look for the good.  This was extremely, crazy, psycho-difficult at first.  No kidding, right?! Especially considering that the first 18 months or so of treatment I spent primarily in bed, in pain (from quite uncomfortable to agonizing) and exhaustion.  Barely sleeping from the lyme symptoms and the herxing.  And herxing non-stop.  (Detox schmetox - why wouldn't it work!?) Plus scared of the symptoms.  Scared for my life.  Scared for my family.  And so on...

People would ask me how I was doing during that time and I would always answer 'Oh, a little tiny bit better - it's coming along'.  And I could not tell if it was.  I had no idea if it was.  It terrified me that it might not be.  But that's what I answered.  Because I had to.  Something in me had to.

I clearly remember being frightened to fall asleep each night, yet at the same time desperate for a break from the exhaustion and agony.  I would keep the phone beside me and make my husband promise, yes promise, to check on me every 20 minutes in case I died.  And I was well aware that that was sort of a stupid plan - i.e. why check to see if someone is dead?  If they are dead, they are dead! But I needed the reassurance that maybe he would somehow save me in time and I could stay alive.  The phone would be right beside me to call 911.  I was really that scared.  For many months.  Ugh.

The other part of night time that frightened me was to have myself actually fall asleep, but then wake up in an even worse state of agony and have no choice but to call 911.  I got to the point where I would rather stay awake and watch the progression of worsening symptoms and then decide to go to the hospital versus falling asleep and waking up into an emergency situation. Apparently I'm not big on surprises. ;)

Ah the fun of it all!

But through all of that, I kept holding on to the positives.  The sunshine in my window.  My dogs furry bodies cuddled up next to me.  The hot water bottle.  My cuddly socks. The fact that my sweet husband would actually promise me over and over again to check on me.  And would listen to me freaking out repeatedly.  What about the toll on him?  What about the toll on the kids?  What about the toll on all my family and friends?  What a mess.  As anyone who has or is going through this or similar knows all too well.

Anyhow, I can't say that things are easy-peasy now because I am still struggling on a daily basis.  We, as a family, are hence still struggling on a daily basis. And there are still too many times where I am scared.  But way way less than before.  For the healing that has occurred, I am so deeply and incredibly grateful.  Of course I also continue to regularly lose my sh@t due to fear, depression, guilt, anger... all those dark emotions.   I like to try to honour their course - I am human after all!  But then I pull myself out again - bring on the gratitude. Settle back into faith that this all makes sense and is okay somehow. 

Do I think I can say I am a completely 100% happy person?  No, not at all.  I wish I could.  I wish I could get to that point of faith and trust.  But there is still too much fear.  I know there are sayings like 'The only thing to fear is fear itself' but I don't buy it.  (I want to buy it!  Puhleeeeassse!) I fear pain.  I have been in such pain that I wished I was dead even though I didn't want to be dead.  I have not wanted to fall asleep at night because I don't want to wake up and have to face another day of this hellish existence.  Nevertheless... I'm still pretty happy all things considered.  Traumatized, yes.  Scared of the future?  Sometimes.  Sometimes a lot.  But I'm going to keep going - moment to moment, doing the best I can, enjoying as much as I can.  Because this is my life!

So... back to the article.  Here are the items it lists as keys to happiness:

1. Surround yourself with happy people
2. Smile when you mean it
3. Cultivate resilience: "Fall seven times, stand up eight" (Love this!)
4. Try to be happy
5. Be mindful of the good
6. appreciate simple pleasures
7. devote some of your time to giving
8. let yourself lose track of time
9. Nix the small talk for deeper conversation
10. Spend money on other people
11. Make a point to listen
12. Uphold in-person connections
13. Look on the bright side
14. Listen to uplifting music
15. Unplug from all the technology
16. Get spiritual
17. Make exercise a priority
18. Go outside
19. Rest
20. Laugh
21. Walk the walk - i.e. hold your posture in a more positive way than depressed way

This list helps me see why I am managing to be happy!  How exciting to see it written out like that! ;)

The strongest ones for me are #s: 1, 3, 4, 5, 6, 9, 12, 13, 16, 18, and 19 (ha!!!!!).

Of course, a lot of these are modified for me due to the lyme - for example, exercise may mean stretching my body one day, a short, slow, painful walk the next.  But exercise is on the table - I value it and I try.  Sometimes I have a nice walk where I sort of can pretend I'm a regular person too.  WOW.

In-person connections can be difficult to uphold when you can't leave your bed.  But I've always kept my connections as best as I can.  Emails, phone calls, friends sitting in bed to visit me.  Don't get me wrong - when I was at my sickest I was extremely lonely because there gets to be very little to say and people maybe don't want to be around when someone is that sick.  But I still held on as best as I was able.  And so, thank goodness, did my family and some of my friends. I also can't listen to music due to noise sensitivity, etc, etc... but for the most part - I see me in this list.

Cool.