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.
Showing posts with label herxing. Show all posts
Showing posts with label herxing. Show all posts
Wednesday, November 20, 2013
Friday, November 1, 2013
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.
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.
Tuesday, September 17, 2013
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:
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.
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:
- Surround yourself with happy people
- Smile when you mean it
- Cultivate resilience: "Fall seven times, stand up eight" (Love this!)
- Try to be happy
- Be mindful of the good
- appreciate simple pleasures
- devote some of your time to giving
- let yourself lose track of time
- Nix the small talk for deeper conversation
- Spend money on other people
- Make a point to listen
- Uphold in-person connections
- Look on the bright side
- Listen to uplifting music
- Unplug from all the technology
- Get spiritual
- Make exercise a priority
- Go outside
- Rest
- Laugh
- Walk the walk - i.e. hold your posture in a more positive way than depressed way
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.
Wednesday, July 17, 2013
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.
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.
Friday, July 5, 2013
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.
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.
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.
Thursday, May 23, 2013
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.
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.
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