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.

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.

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.

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!

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!

Studying

As sick as I have been, I can sometimes still study in bed. I just have to do it in short bursts with lots of rest in between. No schedule, just heeding when and how much my body says is okay.

I'm learning about holistic nutrition to help me heal. And I've discovered an absolute passion along the way. Lucky, lucky me. :)

Being heard

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

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

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

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

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

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