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.
Wednesday, May 29, 2013
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.
Friday, May 24, 2013
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!
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!
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.
Thursday, May 16, 2013
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! :)
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.
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.
Wednesday, May 15, 2013
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....
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....
Monday, May 6, 2013
My family's patience
I got mad this evening. Really stupid angry. Ranted and raved and was not an example of the patient, wise mother that I strive to be. My little one did something I asked her not to, but in a sneaky way. She didn't actually break the rules but still did exactly what I had asked her not to do. Normal kid stuff. But it enraged me in a way it didn't need to.
I finally gave up on calming down and headed up to bed, closed the door, and am now taking a long (very long!) mommy time out. 'Space' is what we call it in our family. "Mommy needs some space". No $!&@ing kidding she does.
I can still feel lingering anger. It's crazy train. I hate this about the lyme. I don't know if it is 'Lyme rage', or simply the fact that my buttons can be pushed more easily when I'm worn down from fighting this illness, stuck in the house too much, and grumpy from symptoms and herxing.
I can be so nasty! I am sure the illness is a big part of it but that doesn't really make me feel any better about myself. In the months I was super duper insane in the membrane sick (vs the somewhat less sick but still ridiculous state I'm at now) my temper was so short. Outrageously short. I apologized a lot. In between the ranting. Yikes. Lately it's been better. Which is perhaps why it bothers me so much when I lose it in a situation that I know the normal me wouldn't be losing it in? Funny how things are harder when you're a bit better. Harder when there is farther back to fall.
So I am incredibly grateful for my family's never ending patience with me. With my moods. Still able to see the real me underneath and between it all. I am one lucky, lucky mama.
I finally gave up on calming down and headed up to bed, closed the door, and am now taking a long (very long!) mommy time out. 'Space' is what we call it in our family. "Mommy needs some space". No $!&@ing kidding she does.
I can still feel lingering anger. It's crazy train. I hate this about the lyme. I don't know if it is 'Lyme rage', or simply the fact that my buttons can be pushed more easily when I'm worn down from fighting this illness, stuck in the house too much, and grumpy from symptoms and herxing.
I can be so nasty! I am sure the illness is a big part of it but that doesn't really make me feel any better about myself. In the months I was super duper insane in the membrane sick (vs the somewhat less sick but still ridiculous state I'm at now) my temper was so short. Outrageously short. I apologized a lot. In between the ranting. Yikes. Lately it's been better. Which is perhaps why it bothers me so much when I lose it in a situation that I know the normal me wouldn't be losing it in? Funny how things are harder when you're a bit better. Harder when there is farther back to fall.
So I am incredibly grateful for my family's never ending patience with me. With my moods. Still able to see the real me underneath and between it all. I am one lucky, lucky mama.
Sunday, May 5, 2013
Good days
I haven't posted in a little while simply because I haven't been lying in bed as much. How absolutely freakin' fantastic is that?! This has happened to me a few times now in the nearly 4 years that I have been sick, and 2 years that I have been under treatment. Literally, a FEW times. Once last fall, once in December, once in January, and now this last week.
Yippeee skippy, happy days!
I like this. A crazy lot.
I'm on my best antimicrobial rotation - Samento and Banderol (Cowden Protocol) right now. The one I have been on the longest. The one I now herx on the least. It's my first week on it for this go round and I have been up'ing my dosage very very slowly. Trying a new idea out... What if, heaven forbid, I increase my dosage drops at a rate that does not make me herx to the point where I feel brutal all the time? And the answer to that question is that I honestly don't know. I love this protocol. I'm healing. But I herx nearly all the time and hence am an inflamed, sicko mess nearly all the time. Pulling myself through the days on sheer willpower, faith, and feigned enthusiasm. Which are all great - but how about giving myself a break for a bit?
This is what I want to try. Not much of an experiment when I start out on it with my best rotation. But, I have to start somewhere and this is the next one up. It doesn't hurt that summer seems to have appeared out of nowhere too. Snow two weeks ago and 27 degrees today. Such a relief!
I've still been in bed enough. The usual nap-time calling my name from 12:30-2:30 each afternoon. Forcing myself to get up when I wake up. Bed enticing me to retire for the evening at 7:30 pm or so... But the time I'm up in between isn't as difficult as usual. I'm in a better mood because my head isn't spinning and hurting as much. My body still hurts too, but maybe not as much either. (I don't know - I tend to ignore it a lot to keep the positive vibe going). I'm more active though. Doing a bit more, sitting a bit less. Did some weeding in the garden, took not one, but two walks with my child - even took the dog along which usually I don't have the patience for. Cooked a bit, cleaned a bit, a few loads of laundry, swept the decks and patio. Fun, fun, regular person weekend stuff.
I love the good days!
Yippeee skippy, happy days!
I like this. A crazy lot.
I'm on my best antimicrobial rotation - Samento and Banderol (Cowden Protocol) right now. The one I have been on the longest. The one I now herx on the least. It's my first week on it for this go round and I have been up'ing my dosage very very slowly. Trying a new idea out... What if, heaven forbid, I increase my dosage drops at a rate that does not make me herx to the point where I feel brutal all the time? And the answer to that question is that I honestly don't know. I love this protocol. I'm healing. But I herx nearly all the time and hence am an inflamed, sicko mess nearly all the time. Pulling myself through the days on sheer willpower, faith, and feigned enthusiasm. Which are all great - but how about giving myself a break for a bit?
This is what I want to try. Not much of an experiment when I start out on it with my best rotation. But, I have to start somewhere and this is the next one up. It doesn't hurt that summer seems to have appeared out of nowhere too. Snow two weeks ago and 27 degrees today. Such a relief!
I've still been in bed enough. The usual nap-time calling my name from 12:30-2:30 each afternoon. Forcing myself to get up when I wake up. Bed enticing me to retire for the evening at 7:30 pm or so... But the time I'm up in between isn't as difficult as usual. I'm in a better mood because my head isn't spinning and hurting as much. My body still hurts too, but maybe not as much either. (I don't know - I tend to ignore it a lot to keep the positive vibe going). I'm more active though. Doing a bit more, sitting a bit less. Did some weeding in the garden, took not one, but two walks with my child - even took the dog along which usually I don't have the patience for. Cooked a bit, cleaned a bit, a few loads of laundry, swept the decks and patio. Fun, fun, regular person weekend stuff.
I love the good days!
Subscribe to:
Posts (Atom)