Three in a row - this must be a personal record. But there's so much I'm processing right now, and it is so helpful to blog about it.
Yesterday was tough. Physically, and emotionally, which comes back to the physical toll. My son took the news much much better than I could have imagined. Which means (I'm taking credit, yes, owning my strengths!) that I laid it out for him in a way that made sense to him, and gave him the time to process it. His initial reaction was "well, it's cancelled for you, but I can still go, right?" I was so super proud, because I had honestly been expecting a totally different reaction.
Because I was already so tired out, I really leaned on the other adults in my village to help me help him decide whether or not going on his own was a really good idea, and as it has turned out, he is now in the tent, in the backyard, sleeping with my Mom.
So tonight's post is all about gratitude, because that is what I need to express right now.
Friday, 24 August 2012
Wednesday, 22 August 2012
Cancellation
Bet you never thought you'd hear from me again so soon. Don't know if I've EVER posted two days in a row. But today was a really hard and significant day.
I woke up feeling like crap. I could barely move, and considered cancelling my therapy appointment, but something inside me knew I needed to go. So I did. And I spent practically the whole hour in tears. I had a heartwrenching decision to make that I didn't even realize I was considering making. The end result, I am not going camping this weekend.
The significance comes from my making this decision from a place of self-care, of self-awareness and of really weighing the costs. What's new about this is that I really am learning to balance my needs and my wants when they are out of whack. And in this case, they are majorly out of whack.
I am exhausted, emotionally and physically, and I know this was the right decision, but I am so very very sad. I feel like this illness has already taken so much from me, and why does it have to take even more? Days like this it is very difficult to remember what I have gained, what I have learned and how I have grown.
I know I will look back on this day as a turning point, as the moment when caring about the cost to my health was more important than the desire to follow through with plans, the fear of letting people down, and the grief of missing out on a seriously wonderful experience. But right now, I'm just sad and disappointed, and tired.
I am going to rest now, and hope that sleep comes to play tonight.
I woke up feeling like crap. I could barely move, and considered cancelling my therapy appointment, but something inside me knew I needed to go. So I did. And I spent practically the whole hour in tears. I had a heartwrenching decision to make that I didn't even realize I was considering making. The end result, I am not going camping this weekend.
The significance comes from my making this decision from a place of self-care, of self-awareness and of really weighing the costs. What's new about this is that I really am learning to balance my needs and my wants when they are out of whack. And in this case, they are majorly out of whack.
I am exhausted, emotionally and physically, and I know this was the right decision, but I am so very very sad. I feel like this illness has already taken so much from me, and why does it have to take even more? Days like this it is very difficult to remember what I have gained, what I have learned and how I have grown.
I know I will look back on this day as a turning point, as the moment when caring about the cost to my health was more important than the desire to follow through with plans, the fear of letting people down, and the grief of missing out on a seriously wonderful experience. But right now, I'm just sad and disappointed, and tired.
I am going to rest now, and hope that sleep comes to play tonight.
Getting Ready and the Herxheimer Effect
This week, we are going on our annual camping trip. If you read the posts about this last year, then you know we go to a beautiful place, with the same people every year. We've been doing so for 6 years now, since my son and the other family's oldest daughter were very little. Every year since, we've had other families join, or not, with varying numbers of people. Last year's trip was really great and we all know what to expect of me this year - basically, nothing.
The counterbalance to that is that my son is getting older and more capable. Last week, at the cottage with his step-mom, he loaded and unloaded all the groceries, and pulled the kayaks in and out of the water, all by himself. Camping, he is all set to build and strike the tent, pump up the air mattress (which is a major change for me as of last year - I usually go rough, jut a mat, but my body has needs now), and carry all our stuff. Now, will that change again when we get there? Probably, a bit. Although the other children are becoming more involved in the set-up as well, and that helps him stay on course.
This weekend my sister took me (in the wheelchair) to Canadian Tire to pick up the last few things we needed - more ice packs for the cooler, a new camping chair - stuff like that. Step one, done. Some of the camping things from last year are still in the dining room, so I sorted those out. Step two, done. Went to the basement and assessed what needs to be brought upstairs. Step three, done. Ordered groceries online, to be delivered today. Step four, partially done. Started fixing the recliner that broke last year, covering it with duct tape (yay duct tape!), doing bits and pieces at a time. Step five, partially done. Still need to pack everything up and bring some things upstairs. Steps six and seven not even started. But I'm doing well with this whole getting ready in small and mangaeable steps thing.
The counterbalance to that is that my son is getting older and more capable. Last week, at the cottage with his step-mom, he loaded and unloaded all the groceries, and pulled the kayaks in and out of the water, all by himself. Camping, he is all set to build and strike the tent, pump up the air mattress (which is a major change for me as of last year - I usually go rough, jut a mat, but my body has needs now), and carry all our stuff. Now, will that change again when we get there? Probably, a bit. Although the other children are becoming more involved in the set-up as well, and that helps him stay on course.
This weekend my sister took me (in the wheelchair) to Canadian Tire to pick up the last few things we needed - more ice packs for the cooler, a new camping chair - stuff like that. Step one, done. Some of the camping things from last year are still in the dining room, so I sorted those out. Step two, done. Went to the basement and assessed what needs to be brought upstairs. Step three, done. Ordered groceries online, to be delivered today. Step four, partially done. Started fixing the recliner that broke last year, covering it with duct tape (yay duct tape!), doing bits and pieces at a time. Step five, partially done. Still need to pack everything up and bring some things upstairs. Steps six and seven not even started. But I'm doing well with this whole getting ready in small and mangaeable steps thing.
Friday, 17 August 2012
Real life, Meet Blog Life
I've been musing for a while, as you know if you've been sharing this journey with me, how open to be with the details of this whole extreme healing situation, with people beyond my most trusted allies (yes, I've probably been playing too many RPG's) for a great many reasons. These are the three biggest:
One - many people, and many doctors in fact, do not believe Myalgic Encephalomyelitis (ME) is real. And if they do, they probably know it as Chronic Fatigue Syndrome (CFS), the unfortunate names that leads to a great many different types of misunderstandings, like - gee, I'm always tired too, what's the big deal? The fact is that much of Western society is perpetually tired. This is not fatigue, and there is a big difference which is unfortunately not widely understood. Also, in ME, fatigue is really very very tiny part of the problem, and more of a side effect - you can read all about it on my Symptomology page. My story could perhaps convince some people that this is indeed a severe and very real illness, or at least raise little bits of awareness. On the other hand, I could face backlash.
Two - my personal and professional lives are very much intertwined, what with my Mom being my boss but not really, and my son being friends with my former students and whatnot. So to open up in my personal life to casual friends and acquaintances, means opening myself up in my professional life, and opening up in one's professional life is not normally considered the correct and professional thing to do. Especially when you combine reasons one and two. People who lose respect for me in a professional situation may very well project that onto my mother, (although that is less and less likely the longer I am on medical leave) so it is not only my professional life, but hers as well.
One - many people, and many doctors in fact, do not believe Myalgic Encephalomyelitis (ME) is real. And if they do, they probably know it as Chronic Fatigue Syndrome (CFS), the unfortunate names that leads to a great many different types of misunderstandings, like - gee, I'm always tired too, what's the big deal? The fact is that much of Western society is perpetually tired. This is not fatigue, and there is a big difference which is unfortunately not widely understood. Also, in ME, fatigue is really very very tiny part of the problem, and more of a side effect - you can read all about it on my Symptomology page. My story could perhaps convince some people that this is indeed a severe and very real illness, or at least raise little bits of awareness. On the other hand, I could face backlash.
Two - my personal and professional lives are very much intertwined, what with my Mom being my boss but not really, and my son being friends with my former students and whatnot. So to open up in my personal life to casual friends and acquaintances, means opening myself up in my professional life, and opening up in one's professional life is not normally considered the correct and professional thing to do. Especially when you combine reasons one and two. People who lose respect for me in a professional situation may very well project that onto my mother, (although that is less and less likely the longer I am on medical leave) so it is not only my professional life, but hers as well.
Monday, 13 August 2012
Busy Busy August
I've been quiet here all month, but not because nothing's going on. In fact, a lot has been going on. And I hit the point of needing to recover and I have, mostly, and still have a bit more compensating to do.
So let's play catch-up!
As I may or may not have written, my summer schedule organization was complex enough for me to feel the need to open separate google calendars for myself and my son. I have been coordinating his life between 5 households, including mine. Yep. Fun stuff. Especially on the foggy days. But it has all been going very smoothly, thanks in great part to my sister and brother-in-law who drove downtown in rush hour to camp and back for three weeks straight with all four of our kids in the van - not sure how they stayed sane.
The first weekend in August, we had the immense pleasure of hosting my aunt Cuq (who is familiar to all regular readers) and Ish (yes, it's a nickname). They were here for a very brief but so very warm and lovely visit. The best part was that most of the visit was just hanging out. I did, however, make it out to two dinners - two dinner in proper restaurants, with lots of people in one wekeend! That is definitely a record for me. The best part of being with Cuq and Ish is that there are no expectations - they know me and accept me and love me and accomodate me and protect me. They are family after all, so I don't feel weird about dropping off in the middle of a sentence, or just putting my head down in the middle of a conversation. That's pretty awesome.
So let's play catch-up!
As I may or may not have written, my summer schedule organization was complex enough for me to feel the need to open separate google calendars for myself and my son. I have been coordinating his life between 5 households, including mine. Yep. Fun stuff. Especially on the foggy days. But it has all been going very smoothly, thanks in great part to my sister and brother-in-law who drove downtown in rush hour to camp and back for three weeks straight with all four of our kids in the van - not sure how they stayed sane.
The first weekend in August, we had the immense pleasure of hosting my aunt Cuq (who is familiar to all regular readers) and Ish (yes, it's a nickname). They were here for a very brief but so very warm and lovely visit. The best part was that most of the visit was just hanging out. I did, however, make it out to two dinners - two dinner in proper restaurants, with lots of people in one wekeend! That is definitely a record for me. The best part of being with Cuq and Ish is that there are no expectations - they know me and accept me and love me and accomodate me and protect me. They are family after all, so I don't feel weird about dropping off in the middle of a sentence, or just putting my head down in the middle of a conversation. That's pretty awesome.
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