This week I have gratitude for myself. For the 'staying power' I somehow summon up to keep on keeping on in this grand old healing from chronic lyme disease journey.
I have gratitude for all the other people out there who are courageously keeping on in their own journeys too. People with chronic lyme, people with other chronic illnesses, people with entirely different issues that are challenging them beyond what they ever dreamed they would have to handle. Yet handle it we do. All inspirational. And I'll take all the inspiration I can get. :)
I've now hit 27 drops of the houttunyia/enula. Yippee. (Sarcasm, yes). And despite that I've been going at this for over a month, I've decided to keep going until I hit the 30 drops I was supposed to start the rotation with. (!) Hoping to achieve this in another week or so. Which makes me realize that I had better up the dosage to 28 drops this afternoon. (Sipping my 27 drop before-lunch concoction right now as I type...).
Oh joy, joy, joy.
So... it has really not been fun. Is it always this horrendous??!! (I think it probably is... and then I conveniently, or more likely lyme-brain-foggily, forget how bad it has been until I hit the same rotation again)
This rotation is not getting easier. I am not sleeping well. I get red faced and chills and generally gross feeling in the evenings. My head is foggy nearly all the time and it hurts too. My eyesight is worse. My eyes are more tired. Harder to read when I'm lying in bed. I'm having nightmares.
I'm taking the Cowden protocol's Zeolyte HP for heavy metal detox too - every third night - and that often is what puts me over the edge both symptom and nightmare-wise. The last dose I dreamt about being chased and slashed with a knife. Over and over again to all different parts of my body. I would wake up, realize I was dreaming, and fall back asleep and keep dreaming the same dream. Erg.
The light at the end of the tunnel here is that my next rotation is Samento and Banderol. Ooooo hooo hooo! If I have a chance of feeling good on any of the antimicrobials, Samento/Banderol are the ticket! AND... bonus of bonuses... it should coincide with the Christmas holidays. How nice would that be to have a chance at feeling a bit better while my kiddos and dear hub are off for the holidays.
Wednesday, November 27, 2013
Wednesday, November 20, 2013
you never really know
So here I am a month in on my houttunyia/enula rotation. And it's been tough. I've just hit 25 drops (started at 20). I haven't been sleeping well, there has been indigestion. Belching - ugh! My intestines feel out of whack. And I am going SLOW. My brain fog is up and my fatigue is higher than the previous month. I want to cry a lot. I feel down and of course everything then feels harder.
Then two nights ago, I went to bed feeling okay, and actually slept through the entire night! Without waking up 2 hours after falling asleep.... like I regularly do because of discomfort throughout my body.
So why the shift? I don't really know - it could have been a fluke. It could be that my body is finally getting used to this rotation and not reacting as badly. That happens with time. However... I am a little extra curious... as I am doing an exchange with a friend of a friend. I'm helping her with Nutrition and she is giving me Access Consciousness sessions. She 'ran the bars' for me for my first time ever on the day I slept through the night. I have done a lot of energy work in the past - some learning myself and I have also gone for various treatments. Reiki, reconnection, allergy energy work, Chinese medicine, etc. This one was a new one for me me. And it felt a bit different. Very light and gentle.
At the end of the session I did not feel profoundly different - although definitely 'lighter' and happier. I smiled for a long time afterwards. (Which was great in contrast to the 12 hours I had spent pretty much non-stop crying a couple of days before that!!!).
So yes, the night after my Access Consciousness session is the night I slept through. And then I had a good day afterwards. I even cleaned out closets and decluttered - AFTER dinner! I never have energy like that after dinner. I ended up red faced and feeling a bit woozy - as usual. But I did it. It felt great.
Then I went to bed last night, had trouble falling asleep, did not feel well at all while trying to fall asleep (itching like there were bugs all over me, general aches, chills and discomfort) and I did not sleep well again - woke a few times feeling gross. So back to the regular ol' houttunyia/enula rotation pattern. Weird.
I'm really interested to see if the next time I have an energy session I see such a difference again.
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.
Monday, November 11, 2013
Parenting with chronic Lyme disease
A friend shared this article on parenting with chronic illness with me and it really struck a chord. Made me want to weep with empathy for all going through this type of experience. Made me want to be gentler on myself. Be easier on my family.
I would imagine that the people most of us with chronic illness are surrounded by are those that are well. I have no illusions that this is life and everyone is going through something - of course we all are! But those of us ill and mostly housebound probably see a lot of others around us that can still actively parent their kids. I sure do. I don't have anyone in my neighbourhood or circle of friends that I see regularly that are dealing with what our family is. We see moms and dads that leave the house with their kids. A lot! That volunteer at school. That take their kids out to do sports and piano lessons. Parents who regularly socialize with other families and have all their kids hang out together. Parents who take family vacations and go to the mall with their kids. Parents who can afford to get a babysitter once in awhile so they can go out and enjoy themselves. And when they do go out, not feel so sick that they have to fight through it to enjoy themselves.
It's not that I am not crazy happy to be here. I'm so grateful to still be on this earth and to be able to be here for my kids in the capacity that I am. I see them every day. I hug them and kiss them. I talk to them. I've even been taking them to swimming lessons. This is huge, massive, fantastic. I am in love with it.
But sometimes, there is that natural overwhelm that slaps me in the face as I am constantly reminded what I can't do for them - that all their friends' parents seem to be doing. My kids weren't allowed to have playdates at our house for several years because I didn't have the energy to supervise and I couldn't handle the noise and chaos. They lost friendships because of it. Now they are allowed one once a month or so. This is hard on them for the lack and hard on me for the effort. And I'm too strict when they have playdates because I still can't handle noise and chaos! We don't do sleepovers for the same reasons. And I'm grumpy, a lot. I wish I wasn't, but I'm tired and in pain and have trouble standing up a fair bit of the time still (lightheadedness/dizzy). Then there are the meds that bring on anxiety and rage. (Fun!) I'm also not at work so we just don't have the cash to do the 'cool' birthday parties or buy them the latest clothes or toys. Not that I was ever a huge believer in that sort of stuff - but sometimes it would be nice for them. I never volunteer at school because I soooo can't.
My kids hear 'No' all the time. You thought a 2 year old's 'No's' were over the top? Try me! 'Mom, can you help me with my homework?" "Mom, can you do this craft with me?" "Mom, can you make me a snack?" "Mom, can you read this book with me?" "Mom, can you play this game with me?". It saddens and embarrasses me to an extent that most of the time they don't even ask me these questions anymore. Because I almost always say No.
So that can get me down. Can you imagine reading those statements before becoming a parent and thinking Oh yes, sign me up! Can't wait to be such a horrible parent to these poor kids! Oh the therapy they will need when they grow up! Dysfunction - bring it on!
So I consciously pull myself out of these thoughts once again. I'm here. I exist in their lives. I can listen to them on a daily basis - maybe on my terms, but I can. On the rare occasions I can pull myself together to play a game with them or read to them, then I do. I embrace those times and go for it and it's amazing. With all the knowledge I have gained as I heal, I am teaching them how to take good care of their bodies. To hear their bodies. I'm teaching them that it's not money or popularity or stuff that matters. We don't need any of that. It can be fun sometimes, sure. The people around us can got caught up in it and make us think we need it too. But it's not what true happiness is built on. These lessons come up over and over again.
I'm blessed to have these fabulous kids in my life. They are a ginormous part of what keeps me going. Like the woman in the article says - faith, family. These are the biggies for me too. I just hope the good that I'm teaching these dear children outweighs the negativity they face on a daily basis. I really do.
I would imagine that the people most of us with chronic illness are surrounded by are those that are well. I have no illusions that this is life and everyone is going through something - of course we all are! But those of us ill and mostly housebound probably see a lot of others around us that can still actively parent their kids. I sure do. I don't have anyone in my neighbourhood or circle of friends that I see regularly that are dealing with what our family is. We see moms and dads that leave the house with their kids. A lot! That volunteer at school. That take their kids out to do sports and piano lessons. Parents who regularly socialize with other families and have all their kids hang out together. Parents who take family vacations and go to the mall with their kids. Parents who can afford to get a babysitter once in awhile so they can go out and enjoy themselves. And when they do go out, not feel so sick that they have to fight through it to enjoy themselves.
It's not that I am not crazy happy to be here. I'm so grateful to still be on this earth and to be able to be here for my kids in the capacity that I am. I see them every day. I hug them and kiss them. I talk to them. I've even been taking them to swimming lessons. This is huge, massive, fantastic. I am in love with it.
But sometimes, there is that natural overwhelm that slaps me in the face as I am constantly reminded what I can't do for them - that all their friends' parents seem to be doing. My kids weren't allowed to have playdates at our house for several years because I didn't have the energy to supervise and I couldn't handle the noise and chaos. They lost friendships because of it. Now they are allowed one once a month or so. This is hard on them for the lack and hard on me for the effort. And I'm too strict when they have playdates because I still can't handle noise and chaos! We don't do sleepovers for the same reasons. And I'm grumpy, a lot. I wish I wasn't, but I'm tired and in pain and have trouble standing up a fair bit of the time still (lightheadedness/dizzy). Then there are the meds that bring on anxiety and rage. (Fun!) I'm also not at work so we just don't have the cash to do the 'cool' birthday parties or buy them the latest clothes or toys. Not that I was ever a huge believer in that sort of stuff - but sometimes it would be nice for them. I never volunteer at school because I soooo can't.
My kids hear 'No' all the time. You thought a 2 year old's 'No's' were over the top? Try me! 'Mom, can you help me with my homework?" "Mom, can you do this craft with me?" "Mom, can you make me a snack?" "Mom, can you read this book with me?" "Mom, can you play this game with me?". It saddens and embarrasses me to an extent that most of the time they don't even ask me these questions anymore. Because I almost always say No.
So that can get me down. Can you imagine reading those statements before becoming a parent and thinking Oh yes, sign me up! Can't wait to be such a horrible parent to these poor kids! Oh the therapy they will need when they grow up! Dysfunction - bring it on!
So I consciously pull myself out of these thoughts once again. I'm here. I exist in their lives. I can listen to them on a daily basis - maybe on my terms, but I can. On the rare occasions I can pull myself together to play a game with them or read to them, then I do. I embrace those times and go for it and it's amazing. With all the knowledge I have gained as I heal, I am teaching them how to take good care of their bodies. To hear their bodies. I'm teaching them that it's not money or popularity or stuff that matters. We don't need any of that. It can be fun sometimes, sure. The people around us can got caught up in it and make us think we need it too. But it's not what true happiness is built on. These lessons come up over and over again.
I'm blessed to have these fabulous kids in my life. They are a ginormous part of what keeps me going. Like the woman in the article says - faith, family. These are the biggies for me too. I just hope the good that I'm teaching these dear children outweighs the negativity they face on a daily basis. I really do.
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.
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