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.
Showing posts with label grief. Show all posts
Showing posts with label grief. Show all posts
Monday, November 11, 2013
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.
Saturday, September 14, 2013
Return of the fog and receiving to heal
Day three of my next Mora and Cumanda rotation. This is generally my mid-level difficulty rotation. If I was to rank them. :) Currently, after 2.5 years of being on Cowden (and many other supplements and various meds of course) I find I have the best chance of feeling good on Samento and Banderol. I rarely feel good on Mora and Cumanda, but it's not as bad as Enula and Houttunyia. So we will see how these next few weeks go.
With the new rotation, I noticed almost right away that my brain fog levels went up. And my 'get up and go' seems to have left me for the most part. What I do ever have of it anyways. I think I notice so much because I'm coming off the Samento and Banderol. Where I have the most clarity in my head and the most energy in my body. So the contrast is obvious and of course a little depressing.
But maybe it's time to once again take a conscious look at what gifts this lack of both energy and clarity bring? It's better than the other choice...
It's not that I haven't considered the gifts of chronic lyme before. I have, many times. On some occasions in a state of actual happiness. On other days in total desperation for something, anything, positive to hang on to. To make it through. It's the premise I began this blog with. Gratitude. Life opening up in a way it never could have before. The gifts of chronic illness.
So far, in between the masses of heartbreak, I have found the gifts to be many. Although I still don't trust 100% in the process of letting this journey take its course. I desperately want to. Believe. Trust. Let go. ( But I can't always. Why can't I? WHY???????????) I'm honestly there sometimes and then there are many moments when the doubt creeps in. And I have to talk myself out of it. My hope is that someday I will be there, most of the time, in that state. And be able to anchor myself in it - no matter what may be happening around me.
I, like so many of the rest of us, have learned through my education, my career, my mere existence in North American society... that the way to live is to come up with goals and then quickly achieve them. And I got really good at this. (Well, I think so!). I can plan, organize, and get things done like nobody's business. If you need someone you can rely on to follow through and make stuff happen - I'm your gal. Well, I used to be.
And now I realize that it, life, is NOT up to me. It's not really up to any of us of course. We just live in a culture that makes us believe that we can (and absolutely should!) be in control. So we grasp at that concept and live in massive subconscious fear that this precious control may be taken away from us. When chronic illness hits and all the planning and intentions and fruits of one's labours go straight out the window it's one heck of a shock. So we grieve and, naturally, try desperately to regain domination over our lives.
I freaked out initially upon diagnosis and did my fair share of grieving and grasping at threads of control. I could no longer work, lost my home, lost my ability to parent, lost my social life, lost most hope of ever feeling less than tortured in my own body... you know the drill. Health and financial concerns skyrocketed. I went over and over budget spreadsheets hoping to make them work somehow. Thinking that if I put in enough effort I could magically make life turn out okay - at least on paper.
And what about now? It took me maybe six months to start (baby steps!) learning how to let go. I'm getting better at it. "To let go, and let God" as they say. I do believe it's the answer. Or at least a huge part of the answer. (And I've given up enough that I no longer believe I can ever really 'know' the answer - and I'm good with that!). The true way to live one's life. And honestly, at this point, what other choice do I really have if I don't want to agonize through each and every moment?
Anyhow, I have been following Life Beyond Lyme Lifestyle on Facebook the last while (https://www.facebook.com/LifeBeyondLyme) and Angela had this cool little quote that inspired me. Apologies as I can't remember the first half of it AND I can't even seem to find it again, but the second half of it said something along the lines of 'you need to receive to heal'. I have read so much about healing being about loving yourself. And if you think you are loving yourself, you need to love yourself even more. And I can understand that conceptually but at the same time it wasn't really super sinking in... in a way that touched me at my core. This last statement did.
So I'm watching now... watching for the ways I can receive. For the gifts that are naturally there for me. To love myself and nurture myself more. To fill myself up so there is so much more to spill over and give to others.
What does more brain fog, less clarity, and less energy offer up? Well, less talking, less thinking, more silence, less doing, slowing down, more resting, more hanging out, less frantic and hectic, more peace and calm. And I'm here - in case anyone needs me. Someone to talk to, to listen, to hear. I'm available for the most part.
Except for when you're fighting FOMO, there aren't too many ways to go wrong with more peace and calm and being able to be there for your friends and family. :)
I'll keep watching. And being grateful for these beautiful spiritual and life lessons I am receiving.
With the new rotation, I noticed almost right away that my brain fog levels went up. And my 'get up and go' seems to have left me for the most part. What I do ever have of it anyways. I think I notice so much because I'm coming off the Samento and Banderol. Where I have the most clarity in my head and the most energy in my body. So the contrast is obvious and of course a little depressing.
But maybe it's time to once again take a conscious look at what gifts this lack of both energy and clarity bring? It's better than the other choice...
It's not that I haven't considered the gifts of chronic lyme before. I have, many times. On some occasions in a state of actual happiness. On other days in total desperation for something, anything, positive to hang on to. To make it through. It's the premise I began this blog with. Gratitude. Life opening up in a way it never could have before. The gifts of chronic illness.
So far, in between the masses of heartbreak, I have found the gifts to be many. Although I still don't trust 100% in the process of letting this journey take its course. I desperately want to. Believe. Trust. Let go. ( But I can't always. Why can't I? WHY???????????) I'm honestly there sometimes and then there are many moments when the doubt creeps in. And I have to talk myself out of it. My hope is that someday I will be there, most of the time, in that state. And be able to anchor myself in it - no matter what may be happening around me.
I, like so many of the rest of us, have learned through my education, my career, my mere existence in North American society... that the way to live is to come up with goals and then quickly achieve them. And I got really good at this. (Well, I think so!). I can plan, organize, and get things done like nobody's business. If you need someone you can rely on to follow through and make stuff happen - I'm your gal. Well, I used to be.
And now I realize that it, life, is NOT up to me. It's not really up to any of us of course. We just live in a culture that makes us believe that we can (and absolutely should!) be in control. So we grasp at that concept and live in massive subconscious fear that this precious control may be taken away from us. When chronic illness hits and all the planning and intentions and fruits of one's labours go straight out the window it's one heck of a shock. So we grieve and, naturally, try desperately to regain domination over our lives.
I freaked out initially upon diagnosis and did my fair share of grieving and grasping at threads of control. I could no longer work, lost my home, lost my ability to parent, lost my social life, lost most hope of ever feeling less than tortured in my own body... you know the drill. Health and financial concerns skyrocketed. I went over and over budget spreadsheets hoping to make them work somehow. Thinking that if I put in enough effort I could magically make life turn out okay - at least on paper.
And what about now? It took me maybe six months to start (baby steps!) learning how to let go. I'm getting better at it. "To let go, and let God" as they say. I do believe it's the answer. Or at least a huge part of the answer. (And I've given up enough that I no longer believe I can ever really 'know' the answer - and I'm good with that!). The true way to live one's life. And honestly, at this point, what other choice do I really have if I don't want to agonize through each and every moment?
Anyhow, I have been following Life Beyond Lyme Lifestyle on Facebook the last while (https://www.facebook.com/LifeBeyondLyme) and Angela had this cool little quote that inspired me. Apologies as I can't remember the first half of it AND I can't even seem to find it again, but the second half of it said something along the lines of 'you need to receive to heal'. I have read so much about healing being about loving yourself. And if you think you are loving yourself, you need to love yourself even more. And I can understand that conceptually but at the same time it wasn't really super sinking in... in a way that touched me at my core. This last statement did.
So I'm watching now... watching for the ways I can receive. For the gifts that are naturally there for me. To love myself and nurture myself more. To fill myself up so there is so much more to spill over and give to others.
What does more brain fog, less clarity, and less energy offer up? Well, less talking, less thinking, more silence, less doing, slowing down, more resting, more hanging out, less frantic and hectic, more peace and calm. And I'm here - in case anyone needs me. Someone to talk to, to listen, to hear. I'm available for the most part.
Except for when you're fighting FOMO, there aren't too many ways to go wrong with more peace and calm and being able to be there for your friends and family. :)
I'll keep watching. And being grateful for these beautiful spiritual and life lessons I am receiving.
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, April 24, 2013
Hot water bottle
A dear super sweet friend whom I will be forever grateful to picked me up and drove me to kundalini yoga with her today. This is a big, big deal for me. I don't go to yoga. I don't go to the grocery store. As of late, a trek around the block has been nearly out of reach.
It felt so freakily familiar to be in a yoga class ...oddly dream-like too. I clearly remember a pre-lyme time when my body could do such things and loved moving those ways. It wanted almost nothing of the sort today though. Even sitting still and simply imagining the movements was also, for the most part, rejected. So naturally waves of grief repeatedly overtook me as I sat and lay, mostly resting, while the others moved through the poses. No stranger to grieving, I didn't fight it. Let the intensity flow. Watched it rise and fall.
This was interspersed with gorgeous moments where strong, peaceful energy overpowered me and my eyes dripped tears of relief, my chakras buzzed happily away ... thoroughly safe and lost in the loving vibe.
I was in full body lyme pain on the drive home from the wee bits of yoga my body had allowed, and even seemed to welcome, but there was peace in my heart. Went straight to bed. However, the rest I was hoping would restore me didn't come. Rather chills and pain, and then more of that. Hubbie brought me the hot water bottle eventually, and now, finally, a couple of hours later, my body temperature is starting to balance back out. Mmmmm.... Hot water bottle. :)
Not super willing to try getting out of bed soon, although I had planned to help the kids with homework. Pain and chills, headache and sore throat, dry eyes and malaise. Want to find that peace again. Please?
It felt so freakily familiar to be in a yoga class ...oddly dream-like too. I clearly remember a pre-lyme time when my body could do such things and loved moving those ways. It wanted almost nothing of the sort today though. Even sitting still and simply imagining the movements was also, for the most part, rejected. So naturally waves of grief repeatedly overtook me as I sat and lay, mostly resting, while the others moved through the poses. No stranger to grieving, I didn't fight it. Let the intensity flow. Watched it rise and fall.
This was interspersed with gorgeous moments where strong, peaceful energy overpowered me and my eyes dripped tears of relief, my chakras buzzed happily away ... thoroughly safe and lost in the loving vibe.
I was in full body lyme pain on the drive home from the wee bits of yoga my body had allowed, and even seemed to welcome, but there was peace in my heart. Went straight to bed. However, the rest I was hoping would restore me didn't come. Rather chills and pain, and then more of that. Hubbie brought me the hot water bottle eventually, and now, finally, a couple of hours later, my body temperature is starting to balance back out. Mmmmm.... Hot water bottle. :)
Not super willing to try getting out of bed soon, although I had planned to help the kids with homework. Pain and chills, headache and sore throat, dry eyes and malaise. Want to find that peace again. Please?
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