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.

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!

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.

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....