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!
Friday, June 14, 2013
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.
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.
Friday, June 7, 2013
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.
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.
Tuesday, June 4, 2013
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.
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.
Sunday, June 2, 2013
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.
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.
Wednesday, May 29, 2013
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.
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.
Saturday, May 25, 2013
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.
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.
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