Things have been crazy again... and I am not keeping up with this blog. I didn't foresee this last scare happening, but then I look at my last post about my sweet hubbie and his caregiving role and think, 'How could I have NOT foreseen it?!?'.
Oh yeah, maybe the brain fog and feeling sick all the time and just how ridiculously hard it is simply getting the family through each and every single day in one piece. That could be why I didn't foresee it. Maybe.
Two fridays ago, I had to call 911 as DH thought he was having a heart attack. Massive pain, sweating, nausea, numbness in his arms... the whole experience. It was intense and scary. My adrenalin levels didn't fall for a good 12 hours afterwards. And I have to say I'm usually really really solid in such situations. (Of course I am! Of course DH is too!). Anyhoo, to make a long story short, we had the paramedics come (they were great - always love the paramedics!!), then they took him to the hospital for tests... and... tada - no heart attack - hooray!
Turns out it was an anxiety attack from stress.
The paramedics asked him if he was under stress, the hospital did too. His doctor, in this follow-up appointment, asked if he was under stress. It comes across as such a ludicrous question to someone in our situation. How does one even begin to answer that question when it's been literally years of non-stop spirit-breaking complete-exhaustion-inducing stress? Caretaker for a partner with chronic lyme? Essentially a single dad, with mom hanging around sick ALL the time. Serious money worries. Ridiculous concern as to what the future holds. Even just the basic 'nothing 'fun' to look forward to'. Ever. Can't travel as too sick. Can't go on vacation because of no money. A staycation would be great, and it's what we do, but I can't actually DO much of anything on one. And the kids get grumpy and he gets the brunt of it all. Always.
So I think he looked at the floor and said 'yes, I am under some stress'.
Geesh.
When will it stop? It could be years. It could be forever like this. We don't know. We can't know.
We're doing what we can to improve things for him. Making sure he gets sleep and he starts to exercise again. We can do this. Small stuff.
I hope it's enough.
Showing posts with label coping. Show all posts
Showing posts with label coping. Show all posts
Friday, February 21, 2014
Friday, January 24, 2014
Let's Not Forget Our Caregivers
I am blessed beyond words in that my dear hubby has been here through the thick and thin of this chronic lyme mess and continues to care lovingly for both myself and the kids. It's coming up on 5 years now and he has never given up. Never hinted at throwing in the towel.
This blog focuses on gratitude, and I have heaps of it for his hero husband of mine. I am also well aware that there are many suffering from chronic lyme and other chronic illnesses who are suffering alone. This journey is too hard. And my heart breaks for all of us, but especially those who are soldiering on alone. You are playing both rolls, caretaker and patient. I can only imagine the insane amounts of extra strength this takes. :(
Caring for someone sick, non-stop for years, takes a massive toll. The rougher patches seem to come and go, but I can really see it in him this last month. Christmas and New Years brings up a lot of tough feelings for those with chronic lyme and their families. Memories of better times, hopes that this year will be better than before, hopes that in the future maybe life might go back to normal. Hopes that can be dashed pretty quickly without all the extra stress, pressure and exhaustion at this time of year. It's devastating.
And never mind what the bitter cold weather does for our emotions!
DH and I have been forever hopeful and positive that we're going to get through this. From day one. (In between the panicking. haha!) I am healing. I will heal. Life will be more okay again one day. An okay life of course where I am really careful not to overdo it - there is no way ever I want to hit remission and then be knocked right back out of it by overworking myself or something like that. But now, we're several years into this fight. Things have improved. But nowhere near enough for it not to be a little frightening. Not better enough for me to consider basic Mom/wife/adult norm duties - like going back to work even part time.
What if it doesn't get better?
Physically, I don't want to think about that scenario. Being in a state like this for the rest of my life. I know deep down, after going through all of this nightmarish madness, that I could do it. We could do it. But I'm really not in the mood. (Because that makes a difference... yaaaa. Ha!)
Financially, (if we want to get pragmatic), it's terrifying. Hubs and I have been through the budget literally (sigh) hundreds of times. We should be able to sort of survive long-term. If we do nothing, and buy nothing but meds and food. And if absolutely nothing else goes wrong or comes up as an emergency - ah ha ha ha... cause it never does in life, right?
Unsurprisingly, emotionally we're a train-wreck at this point. So tired of keeping on keeping on. I'm at my wits end just trying to get through each day physically, emotionally, spiritually... trying to be a Mom my kids want to remember having in their childhood vs Momzilla. He's not in a good state either. Emotionally, but also physically because he does everything. Cleaning, errands, dogs, kids, social events, holding down a job. I'm not in bed all the time anymore. I plan. I tidy! I make meals here and there. But he never knows if I will be up to which tasks or if he'll be on the hook for even more chores when he gets home from work each day. How fun.
Emotionally and spiritually speaking, he's also a boy (or anatomically speaking??!). Why don't they talk like us girls do??? How do they get the support they need? I'm here for him. But he could use more. I push him to go out with the guys for a beer when I can tell he is desperate for it (and yes, it would be better not to wait until he is desperate!). But they talk sports. Meaningless guy talk. Which is great to help DH forget his normal life for awhile. But not so great for receiving authentic empathy.
Came across this article yesterday and it of course was just perfectly timed for our troubles:
http://www.psychologytoday.com/blog/turning-straw-gold/201401/not-do-list-caregivers-the-chronically-ill
Shared it with DH and it resonated. It became clear immediately that he is not NOT doing all this stuff on her list either. Oops. Shocker.
I know it's his life which he is the boss of. And he is very private. I will continue to be open with him about this. I'll continue to encourage him to go out with friends when he can. (Difficult due to both budget and time, but we can prioritize it). Maybe get him to share these thoughts with his family.
Grateful beyond anything to have him in my life. Wishing like crazy I could help ease his burden.
In the meantime, I will let compassion flood my heart... for all of us struggling to make it through.
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.
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.
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.
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.
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