another week another couple of drops

This week I have gratitude for myself.  For the 'staying power' I somehow summon up to keep on keeping on in this grand old healing from chronic lyme disease journey.

I have gratitude for all the other people out there who are courageously keeping on in their own journeys too.  People with chronic lyme, people with other chronic illnesses, people with entirely different issues that are challenging them beyond what they ever dreamed they would have to handle.  Yet handle it we do.  All inspirational.  And I'll take all the inspiration I can get. :)

I've now hit 27 drops of the houttunyia/enula.  Yippee. (Sarcasm, yes).  And despite that I've been going at this for over a month, I've decided to keep going until I hit the 30 drops I was supposed to start the rotation with. (!) Hoping to achieve this in another week or so.  Which makes me realize that I had better up the dosage to 28 drops this afternoon.  (Sipping my 27 drop before-lunch concoction right now as I type...). 

Oh joy, joy, joy.

So... it has really not been fun.  Is it always this horrendous??!! (I think it probably is... and then I conveniently, or more likely lyme-brain-foggily, forget how bad it has been until I hit the same rotation again) 

This rotation is not getting easier.  I am not sleeping well.  I get red faced and chills and generally gross feeling in the evenings. My head is foggy nearly all the time and it hurts too.  My eyesight is worse. My eyes are more tired.  Harder to read when I'm lying in bed. I'm having nightmares. 

I'm taking the Cowden protocol's Zeolyte HP for heavy metal detox too - every third night - and that often is what puts me over the edge both symptom and nightmare-wise.  The last dose I dreamt about being chased and slashed with a knife.  Over and over again to all different parts of my body.  I would wake up, realize I was dreaming, and fall back asleep and keep dreaming the same dream.  Erg.

The light at the end of the tunnel here is that my next rotation is Samento and Banderol.  Ooooo hooo hooo!  If I have a chance of feeling good on any of the antimicrobials, Samento/Banderol are the ticket!  AND... bonus of bonuses... it should coincide with the Christmas holidays.  How nice would that be to have a chance at feeling a bit better while my kiddos and dear hub are off for the holidays.  

you never really know

So here I am a month in on my houttunyia/enula rotation.  And it's been tough.  I've just hit 25 drops (started at 20).  I haven't been sleeping well, there has been indigestion.  Belching - ugh! My intestines feel out of whack.  And I am going SLOW.  My brain fog is up and my fatigue is higher than the previous month.  I want to cry a lot.  I feel down and of course everything then feels harder.

Then two nights ago, I went to bed feeling okay, and actually slept through the entire night!  Without waking up 2 hours after falling asleep.... like I regularly do because of discomfort throughout my body. 

So why the shift?  I don't really know - it could have been a fluke.  It could be that my body is finally getting used to this rotation and not reacting as badly.  That happens with time. However... I am a little extra curious... as I am doing an exchange with a friend of a friend.  I'm helping her with Nutrition and she is giving me Access Consciousness sessions.  She 'ran the bars' for me for my first time ever on the day I slept through the night. I have done a lot of energy work in the past - some learning myself and I have also gone for various treatments.  Reiki, reconnection, allergy energy work, Chinese medicine, etc.  This one was a new one for me me.  And it felt a bit different.  Very light and gentle.

At the end of the session I did not feel profoundly different - although definitely 'lighter' and happier.  I smiled for a long time afterwards.  (Which was great in contrast to the 12 hours I had spent pretty much non-stop crying a couple of days before that!!!).

So yes, the night after my Access Consciousness session is the night I slept through.  And then I had a good day afterwards.  I even cleaned out closets and decluttered - AFTER dinner!  I never have energy like that after dinner.  I ended up red faced and feeling a bit woozy - as usual.  But I did it.  It felt great.

Then I went to bed last night, had trouble falling asleep, did not feel well at all while trying to fall asleep (itching like there were bugs all over me, general aches, chills and discomfort) and I did not sleep well again - woke a few times feeling gross.  So back to the regular ol' houttunyia/enula rotation pattern.  Weird.

I'm really interested to see if the next time I have an energy session I see such a difference again.

Parenting with chronic Lyme disease

A friend shared this article on parenting with chronic illness with me and it really struck a chord.  Made me want to weep with empathy for all going through this type of experience. Made me want to be gentler on myself. Be easier on my family.

I would imagine that the people most of us with chronic illness are surrounded by are those that are well.  I have no illusions that this is life and everyone is going through something - of course we all are!  But those of us ill and mostly housebound probably see a lot of others around us that can still actively parent their kids.  I sure do.  I don't have anyone in my neighbourhood or circle of friends that I see regularly that are dealing with what our family is. We see moms and dads that leave the house with their kids.  A lot!  That volunteer at school.  That take their kids out to do sports and piano lessons.  Parents who regularly socialize with other families and have all their kids hang out together. Parents who take family vacations and go to the mall with their kids. Parents who can afford to get a babysitter once in awhile so they can go out and enjoy themselves.  And when they do go out, not feel so sick that they have to fight through it to enjoy themselves.

It's not that I am not crazy happy to be here.  I'm so grateful to still be on this earth and to be able to be here for my kids in the capacity that I am.  I see them every day.  I hug them and kiss them.  I talk to them. I've even been taking them to swimming lessons.  This is huge, massive, fantastic.  I am in love with it.

But sometimes, there is that natural overwhelm that slaps me in the face as I am constantly reminded what I can't do for them - that all their friends' parents seem to be doing.  My kids weren't allowed to have playdates at our house for several years because I didn't have the energy to supervise and I couldn't handle the noise and chaos.  They lost friendships because of it.  Now they are allowed one once a month or so. This is hard on them for the lack and hard on me for the effort. And I'm too strict when they have playdates because I still can't handle noise and chaos! We don't do sleepovers for the same reasons.  And I'm grumpy, a lot.  I wish I wasn't, but I'm tired and in pain and have trouble standing up a fair bit of the time still (lightheadedness/dizzy).  Then there are the meds that bring on anxiety and rage. (Fun!) I'm also not at work so we just don't have the cash to do the 'cool' birthday parties or buy them the latest clothes or toys.  Not that I was ever a huge believer in that sort of stuff - but sometimes it would be nice for them. I never volunteer at school because I soooo can't.

My kids hear 'No' all the time.  You thought a 2 year old's 'No's' were over the top?  Try me!  'Mom, can you help me with my homework?" "Mom, can you do this craft with me?" "Mom, can you make me a snack?" "Mom, can you read this book with me?" "Mom, can you play this game with me?".  It saddens and embarrasses me to an extent that most of the time they don't even ask me these questions anymore.  Because I almost always say No.

So that can get me down.  Can you imagine reading those statements before becoming a parent and thinking Oh yes, sign me up!  Can't wait to be such a horrible parent to these poor kids! Oh the therapy they will need when they grow up!  Dysfunction - bring it on!

So I consciously pull myself out of these thoughts once again.  I'm here.  I exist in their lives.  I can listen to them on a daily basis - maybe on my terms, but I can.  On the rare occasions I can pull myself together to play a game with them or read to them, then I do.  I embrace those times and go for it and it's amazing. With all the knowledge I have gained as I heal, I am teaching them how to take good care of their bodies.  To hear their bodies. I'm teaching them that it's not money or popularity or stuff that matters.  We don't need any of that.  It can be fun sometimes, sure.  The people around us can got caught up in it and make us think we need it too.  But it's not what true happiness is built on.  These lessons come up over and over again.

I'm blessed to have these fabulous kids in my life.  They are a ginormous part of what keeps me going.  Like the woman in the article says - faith, family.  These are the biggies for me too. I just hope the good that I'm teaching these dear children outweighs the negativity they face on a daily basis.  I really do.

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.

Return of the fog and receiving to heal

Day three of my next Mora and Cumanda rotation.  This is generally my mid-level difficulty rotation. If I was to rank them. :)  Currently, after 2.5 years of being on Cowden (and many other supplements and various meds of course) I find I have the best chance of feeling good on Samento and Banderol.  I rarely feel good on Mora and Cumanda, but it's not as bad as Enula and Houttunyia.  So we will see how these next few weeks go.

With the new rotation, I noticed almost right away that my brain fog levels went up.  And my 'get up and go' seems to have left me for the most part.  What I do ever have of it anyways.  I think I notice so much because I'm coming off the Samento and Banderol.  Where I have the most clarity in my head and the most energy in my body.  So the contrast is obvious and of course a little depressing.

But maybe it's time to once again take a conscious look at what gifts this lack of both energy and clarity bring?  It's better than the other choice...

It's not that I haven't considered the gifts of chronic lyme before.  I have, many times. On some occasions in a state of actual happiness.  On other days in total desperation for something, anything, positive to hang on to.  To make it through. It's the premise I began this blog with.  Gratitude.  Life opening up in a way it never could have before.  The gifts of chronic illness. 

So far, in between the masses of heartbreak, I have found the gifts to be many. Although I still don't trust 100% in the process of letting this journey take its course. I desperately want to.  Believe. Trust. Let go. ( But I can't always. Why can't I?  WHY???????????) I'm honestly there sometimes and then there are many moments when the doubt creeps in.  And I have to talk myself out of it. My hope is that someday I will be there, most of the time, in that state.  And be able to anchor myself in it - no matter what may be happening around me. 

I, like so many of the rest of us, have learned through my education, my career, my mere existence in North American society... that the way to live is to come up with goals and then quickly achieve them.  And I got really good at this.  (Well, I think so!).  I can plan, organize, and get things done like nobody's business.  If you need someone you can rely on to follow through and make stuff happen - I'm your gal.  Well, I used to be. 

And now I realize that it, life, is NOT up to me.  It's not really up to any of us of course.  We just live in a culture that makes us believe that we can (and absolutely should!) be in control.  So we grasp at that concept and live in massive subconscious fear that this precious control may be taken away from us.  When chronic illness hits and all the planning and intentions and fruits of one's labours go straight out the window it's one heck of a shock. So we grieve and, naturally, try desperately to regain domination over our lives.   

I freaked out initially upon diagnosis and did my fair share of grieving and grasping at threads of control.  I could no longer work, lost my home, lost my ability to parent, lost my social life, lost most hope of ever feeling less than tortured in my own body... you know the drill.  Health and financial concerns skyrocketed. I went over and over budget spreadsheets hoping to make them work somehow.  Thinking that if I put in enough effort I could magically make life turn out okay - at least on paper.

And what about now?  It took me maybe six months to start (baby steps!) learning how to let go. I'm getting better at it.  "To let go, and let God" as they say.  I do believe it's the answer.  Or at least a huge part of the answer.  (And I've given up enough that I no longer believe I can ever really 'know' the answer - and I'm good with that!). The true way to live one's life.  And honestly, at this point, what other choice do I really have if I don't want to agonize through each and every moment?

Anyhow, I have been following Life Beyond Lyme Lifestyle on Facebook the last while (https://www.facebook.com/LifeBeyondLyme) and Angela had this cool little quote that inspired me.  Apologies as I can't remember the first half of it AND I can't even seem to find it again, but the second half of it said something along the lines of 'you need to receive to heal'.   I have read so much about healing being about loving yourself.  And if you think you are loving yourself, you need to love yourself even more.  And I can understand that conceptually but at the same time it wasn't really super sinking in... in a way that touched me at my core.  This last statement did. 

So I'm watching now... watching for the ways I can receive.  For the gifts that are naturally there for me.  To love myself and nurture myself more.  To fill myself up so there is so much more to spill over and give to others. 

What does more brain fog, less clarity, and less energy offer up?  Well, less talking, less thinking, more silence, less doing, slowing down, more resting, more hanging out, less frantic and hectic, more peace and calm. And I'm here - in case anyone needs me.  Someone to talk to, to listen, to hear.  I'm available for the most part.

Except for when you're fighting FOMO, there aren't too many ways to go wrong with more peace and calm and being able to be there for your friends and family. :)

I'll keep watching.  And being grateful for these beautiful spiritual and life lessons I am receiving.

So glad to be back

It's been a month since I last posted! :(

This is not what I was planning when I began this blog. I want to write regularly. But I guess that's what can happen when you've got chronic lyme and you're at home for the summer with your kids out of school.  And then hubbie was off for 2+ weeks in the middle of August.  So a whole lot of chaos going on and me using every ounce of energy towards trying to enjoy the family time.  Or simply just trying to hold it together.

So how was it, you wonder?  I was expecting our family staycation to be fantastic, relatively-speaking, this year.  I was going to be on my best Cowden rotation - the one I have been on the longest, and herx the least with.  Samento and Banderol.  The rotation I consistently have been feeling a bit better on the last few times.

But, it didn't work.  I was pretty sick.  Lyme sick.  And I was so confused about why!  And super duper frustrated because I have been sick for 4 years now and I was really looking forward to a family vacation I didn't spend primarily in bed.  Is it not time, yet??  Come on!!

Shows how much I have learned to let go and take things in stride, doesn't it.  Not, apparently. HA!  Actually, I do think I am a lot better than I used to be with letting go and just enjoying what the day does or doesn't bring me.  But I guess I still have way too much of the 'human' in me that also gets excited and dreams and looks forward to certain things in her head.  And then reacts in anger and despair when it doesn't happen ... like a toddler having a tantrum.

All that said, we still managed to have a really nice few weeks.  Hubbie and the kiddos did the more active staycation activities on the days I was the worst - water park, hiking around a farm, that kind of thing - and I stayed in bed to rest.  I went with them to go carting - it was just an hour and a half outing - and I got to take pictures and enjoy them all zooming around the track.  I went to the beach with them.  And sat on the sand and waded a little as they swam.  It was summer.  It was hot.  It was hanging out and relaxing. I adore all these things.  I just had to let go of the illusions I was holding about the definition of what our family vacation would mean for me this year.  I knew it would involve little participation - but I still thought it would be a lot more than what I ended up managing.  

So now it's half way through the first week of school for my kids.  And what an amazing difference from the summer!  At the time, it didn't seem like it was that hard to have the kids home.  They are so sweet and self-sufficient and easy for me (for the most part!) - they know how much I struggle and they cut me slack as much as they can.  But it is still so much more restful when they are out of the house, safely at school, not my immediate responsibility - and I know they are learning and having fun with their friends. Not stuck inside bored because Mom can't get out of bed to supervise them outside.

Looking back, I think this is why I got so sick in August.  Despite how diligently I tried to care for myself - taking my meds, supplements, naps, bedtime, etc seriously - it still threw me off balance having the kids home.

Let's see how September goes!

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.

A little bit of biking!

Here I am - nearly a week since my last post, and I have just increased my Houttunyia and Enula dosages to 28 drops today.  This means it took me a full week to go from 26 to 28 drops.  It's slow.  But I'm living a little bit. :)

The kids were at the Grandparent's place for three days last weekend.  That meant hubbie and I had some free time together - wooeee, baby! I love my kids, but oh do I also love the freedom of not having that responsibility once in awhile too.

So, we packed in the frugal, uber-relaxed fun.  What do other lymies do for fun?  We are on a super tight budget, so spending in any big way is out - no shopping sprees, expensive dinners, movies and popcorn, hotel mini-vacations, spa days, etc.  And of course my fatigue and brain fog are huge still too (much better, but huge compared to a healthy person).  So we can't hike or run or zip line or anything like that either.

We ended up going to the beach for a wee walk in the water - just up to our ankles.  Heaven feeling the sand under my feet!  Water is super grounding for me too.  Then we sat on the beach for a long time.  Chatting and chilling.  We did actually go to dinner too.  But we tend to go to an organic, vegetarian place where you pay by weight.  So I get a LOT of salads.  Which I enjoy because I rarely have the energy to make these at home - a real treat.  And the food is actually safe for me to eat at this place.  We also went for a little walk around a downtown neighbourhood (my husband drove us there in the car).  We both love the architecture of the old houses as well as the lush, full gardens and mature trees in these types of neighbourhoods.  Inspiring. Tried to watch a movie one evening at home but we were too tired.  The evening before we went to a movie out - a real movie at the cinema!  This isn't in the budget, but we ask for movie gift certificates for birthdays and Christmas gifts.  A total mini-break from reality.

So these are our date night ideas... walks, a cheap and healthy bit of food out, nature that is close-by, a movie treat.  Sometimes we people watch too.  Sit on a bench in a busy area and just hang out.  Pretty fabulous considering I spent over a year primarily in bed and in pain, but I still wouldn't mind more ideas. 

(And of course all of this fun - with ample resting in between mind you! - resulted in the worst symptoms I have seen in awhile. Major word slurring, brain fog, more body pain, etc.  But I didn't care!)

I need to get to the coolest part of this post though!  We ended up at an end-of-school party for the kids near the end of June.  The host family happened to be a car-free family with a bunch of bikes.  Hubbie and I had previously played around with the idea of getting a tandem bike - so I could sit at the back, barely peddle, and not have to balance or steer.  I miss biking with my family! We searched for a bit on kijiji, but quickly realized that tandem bikes are pricey - way out of our budget.  And we didn't even know if I could actually do it.  Well, this generous family were going out of town on vacation and have just lent us a tandem bike for a few weeks!  We went for our first bike ride two nights ago.  The first time I have biked in literally years.

I adored it.  Do you remember how it feels to bike?  I don't even remember what it feels like to walk without pain - never mind run, or swim, or jump...   We went for a 20 minute ride.  It was scary and a little painful, but mostly massively awesome.  I could cry with the joy.  It's hard to absorb, it's that great.

Right now, for the record, I can walk for about 20 minutes on a usual, 'good' day.  And I'm sore, and sometimes feel like my ankles will give out, but I do it.  Riding in a car as a passenger - with pillows beneath and behind me - has the pain start at about 40 minutes into the drive.  At an hour it gets bad.  If the road is bumpy (Ontario roads!) I end up in tears from the pain. 

So being able to bike - just for a little bit - feels like a miracle.  Gratitude for little miracles!

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.

Agitated, but still better!

I'm still working with my little 'Go really slow on the Cowden Support Protocol' experiment... and I have to say, I like it!  I'm now on a rotation of Houttuynia and Enula.  My toughest rotation every single time for the 2 years I've been doing this.  I've hit the end of the 6 month Cowden Support Protocol now (obviously!) but it continues to help me heal so I simply keep repeating the last three sets of rotations.

The thing is, you're supposed to start at 30 drops for each of these rotations.  I start at 20 or my herx is too bad.  And constant.  For days and days. So now, with my 'go really slow' (although perhaps I should call it 'go really really really slow!') philosophy, it is taking me literally weeks to get up to the 30 drops.  I'm currently on 23 drops of this rotation, and it has been 14 days.

I'm feeling the best I have been though, the most consistently 'good', since I got really sick.  It is INCREDIBLE.  For example, I went to my kid's soccer game last night and pretty gross by the end.  The end!  Not through the whole thing!!!  And it was at night!  Usually my most difficult time of day.  When I don't get out of bed anyway, much less want to leave the house.  I'm going to go to another one tomorrow.  I'm looking forward to it instead of feeling scared.

This is why I'm not blogging as much.  I feel better enough that I am actually sort of, kind of, living my life. It makes me so happy.

I was hoping to go back to work part-time this summer and it's not going to happen.  I'm not that much better.  I still can't get through a whole day, at home, staying up and about with no resting or little rough patches. But I might easily be truly okay for part-time work in 6 months to a year.  As of this July, I'll have been sick for 4 years with lyme.  So,  you can imagine my excitement.

I've noticed that I'm really agitated on this rotation.  (Although still very good at the same time if that makes any sense!) Almost like I want to mini hyperventilate as I feel so much overwhelm.  Up until yesterday, I thought it was just me being a silly, out of control me.  Maybe if I could meditate more, do some better deep breathing, relax more on my walks... I would feel more relaxed and normal.  I went to bed exhausted after lunch and ready for my nap but couldn't sleep.  That rarely happens these days. 

Finally realized it's the meds.  And that helped immensely!  Instead of fighting the agitation I could embrace it.  It's not that "I'm not coping well enough", just that this is one of the side effects of this particular antimicrobial on me.  That's okay.  I'll just relax through it, embrace some reading or staring out the window while I'm in bed instead of napping.

Relief, letting that go.

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!

getting better at balance with lyme

I haven't posted in a week because life has been so busy.  What is it with kids and June?  All the school's-almost-out activities and last minute To Do's.  And everyone with a summer birthday cramming their party into June.  Don't get me wrong.  It's a fun month.  But wow, we are ready to slow down.  2 weeks to go!

I ended up coming out of that last herx and doing really well last weekend.  So well that I was out wandering around an outdoor street festival in our neighbourhood for 2 hours on Sunday with my fam.  And then I walked home!  At a normal pace!  It's only a 20 minute walk, but I hobbled at a snail's pace when I attempted the same thing a year ago.

Bonus was that I didn't feel like going straight to bed when I got home!  No spinning head, no aching body.  Well, a tiny bit.  But not enough that I was anywhere near the state where I could no longer handle standing or sitting upright.  I actually made lunch for my family after sitting outside in the hammock to regroup.  LOVE this. 

I think this is evidence my 'go slow' idea with the Cowden drops is working. I have a doctor's appointment next week and will discuss it with her.  I'd love to keep it up if it won't impede healing progress. Can you imagine a life of healing so much more bearable and, heaven forbid, fun along the way?  I dare to dream.

This last week has been a bit up and down in terms of herxes.  I've actually had an activity booked for every day.  From a 2 hour tea to a track and field meet for my kid to a dog training session for my unruly pup.  So nothing more than a couple of hours per day for the most part.  And I'm still napping daily.  I'm stronger and less fatigued and hence my activity level is up.  I haven't figured out how to balance my body quite right though.  Going in and out of herxing and I think maybe I don't need to... 

Yesterday was terrible. I actually ran out of the Cowden drops for my current rotation (Cumanda and Mora).  Poor planning! ACK!  So I did an early 'in between day' where I am off the antimicrobial drops and only on the herbal detox drops.  I usually look forward to and cherish these days as I feel so good on them - no herxing.  Well, clearly I had messed up my balance as I had a lot of fatigue, tongue and throat swelling, headache, plus general malaise going on.  My only conclusion is that it had to be the stress of the busy week.

Proof right there that this balancing act with lyme isn't easy.  My friend likened it to walking a tightrope - the smallest thing can knock you right off. 

Will keep practice getting better at it though - this is life right?  Everyone, lymie or not, has to come to know their own bodies and spirits deeply so as to keep that delicate balance of enough rest, enough play, enough nourishment - all on a daily basis.  Lyme just takes the whole deal up a notch - keeping us on our toes.

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. 

Inspiration

A healing journey is an incredible one. Fear, pain, emotional anguish, isolation, ... hope, faith, ... faked when it has to be.

I've come so far from the terror and despair of where I began this lyme journey, and have learned so much on the bumpy, twisted (ha!) path to now. My intention isn't to go into personal details about it right now but rather to express my deep gratitude for the wisdom gained. And for the gift of great inspiration from others going through tough times. Circumstances one seems to only be able to truly comprehend after experiencing a similar fate.

Today I came across a beautiful and inspirational post about healing chronic lyme. It is the second time I've seen it and I always take repetition as a sign to pay attention. So here it is: http://www.lymethriving.com/lyme-disease-surrendering-to-a-miracle/

I cherish stories like these. I resonate with the truths - about hardship and about everyday miracles. My heart wants to burst both in empathy for the agony expressed yet also for the sheer joy and beauty in the story. Confirmation, once again, how absolutely amazing this crazy life-on-earth experience is.

Feeling kind of good!

I seem to have recovered from that last weekend of guests! Woo hoo! I'm feeling good, surprisingly good. It happens so rarely. I can't help but love it like I'm a kid on Christmas morning.

I am also wondering if this new 'go slow' regimen of increasing my Cowden drop dosage very slowly - so I don't herx nearly brutally for weeks on end - is working.

Maybe I'm just having a good couple of days. But maybe it is working. :)

I don't usually feel very well on this rotation - Cumanda and Mora. Especially not as I increase my dosage from the initial 20 drops I start with to the 30 drops required. (You're supposed to start at 30 but I find I can only safely handle 20 at the beginning of each new rotation.)

I am excited.

I find myself almost deliriously happy on good days. Like life is the best thing ever. Which it can be, and I do, deep down, really believe it is. But it's such a relief not to have to try so hard to see it through massive fatigue and pain.  Don't get me wrong, I am still having symptoms. But I feel much better than usual. I can walk a bit further without feeling totally gross. Just a little gross. My head doesn't spin as much. It even feels kind of clear for parts of the day.

I can't remember what it feels like to be in a healthy body but I love these little glimpses!

Happy day.

Taking some recovery days

Here it is Wednesday and I still can't seem to recover from having out of town guests last weekend. My body is wanting rest. A tonne of it. I'm grateful that this week is a quiet week and I can give in to a lot of resting. But my poor mind feels like it is going crazy with all this exhaustion. I'm used to a fair bit of fatigue of course, (and I'm sure that is putting it mildly as I tend to minimize it all in my head as a coping strategy) but I guess I've also gotten used to having a bit of routine whereby I'm not in bed quite this much or fighting my body to be out of bed quite this much.

All an amazing indication of the healing that has gone on these past two years. :)

The solution of course is well known to me at this point in my healing journey. I need to listen to my body and give it what it needs as best I can. And listen to my emotions too. Honour my frustration and honour the grief. Honour the anger. I can, and am, doing all of this. Letting it flow.

Yet I still feel like I am going crazy!!! So this too, I honour as best I can.

So, is it worth it to have company stay? I honestly think, at this point, that I'll need to limit it in the future. I did a lot of prep before our guests arrived, I rested a lot while they were here. I stayed up too late in the evenings chatting though because it was fun. And I probably cooked and cleaned up a little bit too much while they were here. I need to learn to ask for more help. Next time I think it might be wisest to limit an overnight visit to one night too.

Lyme is really hard. I still want to be able to have guests and visits but I need to balance this with honouring my limits. And not feeling guilty about it.

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.

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!

My pup

I'm back, it's been a full week! A week where I was a bit better again. That last flare lasted another day and inexplicably went on its merry way. Or maybe very explicably considering all the alkalizing I did.

I'm still on track with my new plan to increase my med dosages very slowly to hopefully avoid the nonstop herxing I usually experience for weeks and months at a time. Too early to tell if this is going to be at all successful, because I'm just three days in to my newest herbal anti microbial rotation. I'm supposed to be at 30 drops of Mora and Cumanda for this one. I started at 20 and am up to 21 today. I've had joint swelling in my right hand and weird hive like bumps on my skin. But that's it. Usually I would take these symptoms as essentially nothing and increase my dosage more quickly - to a level just under what I would find completely intolerable. Aiming to keep it at 'actually feeling kind of okay' this time. For as long as I can.

Wish me luck.

But you the keen reader might wonder, why are you back in bed and posting if you are still feeling good like you say you are? Well, it turns out it's because of that extra gift that comes along with being female... My time of the month. PMS'ing right now and it is making me super tired and sore. How do I know it's not the antimicrobials? I can't for sure logically, but I know my body and this is PMS.

My gratitude this rainy afternoon? All of the above. Feeling good, inspired with new ideas, being a girl and honouring my body's cycles, but also my pup. You can see her in the photo. She's sitting so tightly beside me, pressing into my thigh as I type. Offering comfort, warmth and love.

Epsom salt foot bath

Trying this epsom salt foot bath out for some detoxing. Along with Nutramedix parsley drops and Ecological Formulas tri-salts (calcium, magnesium, potassium) for alkalizing. The red face keeps getting stronger, hotter, itchier... Crossing fingers this works.

Loving the luxury of the foot bath too! :)

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....

My family's patience

I got mad this evening. Really stupid angry. Ranted and raved and was not an example of the patient, wise mother that I strive to be. My little one did something I asked her not to, but in a sneaky way. She didn't actually break the rules but still did exactly what I had asked her not to do. Normal kid stuff. But it enraged me in a way it didn't need to.

I finally gave up on calming down and headed up to bed, closed the door, and am now taking a long (very long!) mommy time out. 'Space' is what we call it in our family. "Mommy needs some space". No $!&@ing kidding she does.

I can still feel lingering anger. It's crazy train. I hate this about the lyme. I don't know if it is 'Lyme rage', or simply the fact that my buttons can be pushed more easily when I'm worn down from fighting this illness, stuck in the house too much, and grumpy from symptoms and herxing.

I can be so nasty! I am sure the illness is a big part of it but that doesn't really make me feel any better about myself. In the months I was super duper insane in the membrane sick (vs the somewhat less sick but still ridiculous state I'm at now) my temper was so short. Outrageously short. I apologized a lot. In between the ranting. Yikes. Lately it's been better. Which is perhaps why it bothers me so much when I lose it in a situation that I know the normal me wouldn't be losing it in? Funny how things are harder when you're a bit better. Harder when there is farther back to fall.

So I am incredibly grateful for my family's never ending patience with me. With my moods. Still able to see the real me underneath and between it all. I am one lucky, lucky mama.

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!

Not normal

Is this normal? Raised, bright red, swollen, bumpy skin under the hypoallergenic blood test tape?

Maybe next time I need to ask for an old-fashioned nasty band-aid. Do they even have them anymore at the labs? I'll bring my own from home.

(I know this is a gratitude blog and to tie everything in, I have to say I'm grateful for 'not normal'. Nothing seems to react as expected with my body. Hello 911? Yes, I just tried a smidgen of another new drug and its not going well... As so many lymies know, to say this is not only terribly frustrating but also terrifying is an understatement. However, I'm still grateful for 'not normal'. How would my mind be this open and my compassion and empathy be this large without all the lessons being an outlier has taught me?)

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?

Puppy heater

I take an afternoon nap every day. Not really an option with the lyme fatigue. Also the headaches... sleep seems to reset me somewhat and dinner is more doable if I have slept.

My dogs get so excited as I finish up lunch: Are we going for a nap now?! Are we? Are we? Hooray! We loooove naps. They bounce around my legs, hyper-happy, like we are going to go for a walk.

I find it odd, but they really do this. Sometimes, when I get a bit depressed about having to spend even more time in bed, I just look down at them pleading with me to go curl up in bed and realize that hey maybe napping is actually pretty darn awesome. Something to be celebrated. Clearly, they say. Clearly!

My fave part is that my oldest dog, she's 15, insists on napping under the covers, curled right up tight against my back for afternoon nap time. Not at any other time of day - it's weird. But I love it. Her energy is soothing, as is the heat.

The difficult part then becomes convincing myself (and them!) to get back up.

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!

Quiet

Hanging out here, resting in bed... after supper. One kid already asleep in her room, the other watching hockey with her dad in the basement.

My bedside lamp casts a warm, comforting glow. It's quiet. So quiet and calm that the pups don't even look up when I shift positions. Everyone is content. I don't care about the pain in my body, or overwhelming fatigue in my head. Because I feel so peaceful.

Fuzzy blanket!

Today it's this warm, fuzzy beige blanket I'm grateful for. An odd material, I can't recall what it is actually made of. But it is comforting against my skin that is tender and sore to the touch. Strangely soothing to the nauseated-headache-y sensation that seems to have engulfed my entire being.

Writing this, I suddenly realize that it is like snuggling up to a giant, warm, lightweight teddy bear. No wonder it soothes!