The Chronic aspect of Chronic Illness

I hope one day I can get off this see-saw.

I've been re-reading some of my older entries, and been quite surprised at how long I've been off work, how little has changed, and at the same time how much has changed. Some really strong themes going on, still... and probably forever.

In any case, I've been re-reading them because I've had a really rough month. I wanted to check, and yes, it's true, I've been in and out of my parents house now for about 18 months. I've been unable to function independently for over a year, and I don't like it.

I'm turning 40 this year. This is not what I thought I'd be doing at 40. I'm in the process of grieving again. My optimism is still intact, for sure, in a more cautious and tempered way, though. The events of the last couple of years are most definitely taking their toll.

I'd love to know if it's a common experience... I'm sure there are stages that people go through as the years of being chronically ill pass... Maybe one day I will feel up to looking it up. It would help me to know that others who are as affected by their illness go through similar patterns.

Feeling blah

I am feeling a little bit miserable. Caught me another cold. Oh yeah. Hoping this one will follow the pattern set by the last couple, which were normal, and not too long.

In the meantime, I am trying to stay present, and having a bit of trouble as my mind is going overdrive.  I'm really really paying attention though - as much as one can while struggling to stay present. The truth is, staying present when you have ME is not fun, and it's even less pleasant when one has ME and a cold to boot. It feels pretty unpleasant to be in my body right now. La-la-land is very tempting right now.

These are the times when my fear is strongest, when I start to wonder if this cold will be as bad as the first cold (the one that started this whole adventure), if it will turn into something more serious, if it will knock me out again. It's incredibly difficult to assess whether I can do things - whether it's a good idea to try to empty the dishwasher or not. Whether I can take a shower. Whether I'll be able to make and serve dinner.

It's hard because my body is more delicate, and because my mind is foggier. I've been leaving things in the microwave again. Things I wanted. Like really wanted. Or needed. So how much of that is that I'm turning 40 and how much of that is that I've got the brain fog? And does it matter? Not so much. What really matters is how it affects my functioning. I think I put the milk away this morning. But I think I forgot my pills. I know I forgot the sinus rinse (I only know that because I found it in the microwave), and the sinus rinse is pretty important, especially when congestion is going on.

So the dilemma - do I try to last, or do I ask for help, and what kind of help? My son is with me all weekend, and we have social plans of all kinds. We are having a band practice - the first with the new band members, we're having family friends over, and I'm having my best friends over while he goes off to a birthday party. This was all planned knowing that everything other than the band is totally low-key, and as we say in Mexico, these friends are absolutely "de confianza." Not sure how to translate that other than to say these are the kinds of friends I'd let in my house even if I were in my pjs for five days straight and the dishes were piled to the ceiling. I'm not cancelling them, because even if I can't move, they'll cheer me up.


I do however, need to find a way to conserve some energy because band practice... yeah... wish me luck.

Landing

It's been about a month now that I'm home. It still feels like a new experience. I'm most definitely still in a period of adjustment and reorientation, and I am more at peace with that than ever before.

My kitchen has yet to back up to the point I have to call in for reinforcements. A day at most of unwashed dishes. We've done the laundry - once (it's a good thing we both have plenty of underpants). We mopped the floor in the entryway once. I've had a few showers. My son is having regular showers. We're both sleeping well. We're both eating well. My fridge is not full of rotting food.

Presence and my Immune system

In the last few months, I've had several colds. The exciting thing has been that they actually feel like colds. For the last three years, every time I've had a cold, it's felt like an intensification of my usual symptoms. I didn't get runny noses, or congestion (although my sinuses did get backed up), coughs or sore throats. Now, though, that's exactly what happens, and strange as it may seem, it is great news! It means my immune system is working somewhat normally! When I wake up and can't breathe and my throat is all scratchy, I feel happy and relieved. Weird but true.

So with my immune system actually functional, my so far successful homecoming, and my energy reserves continuing to build, I'm once again feeling cautiously optimistic about my prognosis. Especially so because even through the several colds I've had the last few months, I've been able to stay present and relatively embodied. That is pretty cool - and a huge accomplishment for me.

Coming Home

Today a friend told me she misses reading my blog. Her saying that meant so much to me, that I've decided to see if blogging still fits me.

I did not return to my home in June. I returned to my home just in time for winter break. I returned with a child who is almost one year older. With my health in steadier, yet not all that much "better" shape. With the determination to change whatever needs to change so that I can stay here, and start to live a more independent life once again.

My energy leakage has been patched up, and I have spent the last 9 months learning how to keep it that way.

Quick update since the last time I wrote, for those who like to know what's going on medically speaking... I have started the GcMAF treatments, and I still cringe every time I have to inject myself. The result however, is a much steadier functionality level - an evening out of the see-sawing if you will - and a faster bounce-back from smaller decompensationary periods. I've been taking dessicated thyroid, which has increased my energy levels (yay!) and decreased the cognitive dysfunciton (double yay!). I've also tested positive for mycotoxins, and have begun a detoxing/binding treatment, to be followed by something or another that will actually get rid of them.

Being home again has been a process of re-orientation and rediscovery. I am grateful to the friends and family who helped me get myself settled, and so very very proud of this child who is taking responsibility for much of the housekeeping.

Since we've come home, we've already dealt with the ice storm, a cold for him, a cold for me, Christmas, a stomach bug for him, and New Years. And I'm still here. Not bad...

I am most enjoying the quiet. The shared quiet moments, like right now. These are the best!

Climbing Out Ever So Slowly

Last time I wrote, just over 3 months ago, I was scared and anxious about my energy leakage. Turns out I was right to be. I also expressed that I was sure this was another moment of growth. I was right about that too.

So what actually happened? Well, as my Facebook and real-life friends know, I was hit by a 'viral event', which turned into a serious sinus infection, and eventually developed into a full-blown 'immune event'. Quite literally overnight (again) I found myself going from feeling moderately unwell to 'holy crap I can't move, and how the hell do I make a cup of coffee again?' - the cognitive dysfunction was so bad that I had to ask my mother to make the decision to have me and my son stay at her house that night.

Up up up down

So as you may have noticed, I've had a period of relatively high energy and low symptoms. And now it's over.

Since January, I enjoyed a bit of a change, where I was able to get out of the house a little bit more, be at peace in my mind, and just generally emerge from my cocooned state a little bit. There are, however, common pitfalls in that state, and I'm afraid I fell into a couple. I am now in the process of forgiving myself for that, and of changing the habits of mind that led me there.

So what happened, you ask? Simple. I fell into old habits. I am used to doing and approaching things in certain ways (head on, full force and in totality). In the last two years, I've learned how expensive that is to my physical well-being. I learned how to pull back, and slow down. I learned to say no, and to do things a little bit at a time. It was hard, and at the same time, I had direct and clear reinforcement - periods of extreme compensation, where my body would remind me of these lessons.

Therapy

This one's going to be personal. I know what you're thinking, all my posts are personal. Yes, they are. But not like talking about therapy. I mean really, you can't get more personal. So why? Because it's come up a few times in the last little while, that I end up talking about my experience with therapy, and I happen to have an awful lot of it to share!

So what is therapy? In many ways, it's easier to say what it's not. It's not someone telling you how to fix your problems. It's not a friendship. It's not about exposing every aspect of yourself. It's not about just getting validation or being told you're awesome. It's also not about "oh poor me" "there there." It's not about blame or shame, or navel-gazing-style, or wallowing, or self-aggrandization. It is most definitely not just for people with mental health issues, severe or otherwise. It's not hard, but it's also not easy.

It is more like an exploration of what it is that shapes you and your relationship to everything in this world, including yourself, guided by someone who is able to compassionately help you see things you don't necessarily want to see, so you can get past them and live a happier healthier life. It's about airing the things you can't talk about with your friends and family and in doing so taking away their power over you. It's about getting through the harder bits and pieces of life without crashing and burning, and it's about personal growth. Sometimes it's fun, and sometimes it's really really painful.

Slowing down

Last time, I wrote about how I would love to find a way to slow down when life is speeding up around me. I am super happy and proud to report that I did it! In fact, I was sure it had been at least a month since I blogged, and that I'd been off Facebook for several weeks. Turns out I'm ten days short of a month, and my fb hiatus lasted at most a week.

That's how slow I've taking things.

The most wonderful part of all of this, is that it's all in my head. No really, it's all in how I choose to approach the situations in which I find myself. Which means that part of it is actually in my control! What an incredible discovery that was for me.

Overdue Update

Wow - it's been a month since I blogged. Yeah. Ok. Here's what's up.

Remember how I was concerned about November? Yeah, well, it was December that got me this year. Not as bad as the last few years, I hope, but I have been experiencing a period of rather intense compensation . One thing after another, and life just moving more quickly than was healthy for me. I would really like to find a way to slow myself down when life won't do it for me. I think that is a very key aspect to a longer-term recovery, in my case.

My month has included food poisoning, a burst pipe, parent-teacher interviews, family events and a huge heap of family drama, weather changes, school committee meetings, and barometric pressure drops, topped off with a little cold I caught this week. So yeah, at least I know why I'm in turtle mode. No mystery here!

November

Remember remember the 5th of November. Nothing lasts forever even cold November rain.

Yep, it's November. And that scares me. Looking back at the last few years, my biggest crashes (including the onset) have all started in November. Why is that?

Cold season? Yeah, I have caught another cold.

Aftermath of Hallowe'en? Could be - we all know I go a little cuckoo for the holiday - but I was careful this year. Although even after all the care I took, even sitting on the floor by the candy so as not to have to get up or lean over too far, my house somehow ended up as the great reunion spot for my boy, his cousins and best friend, and the assorted parents and grandparents that followed them.

Bad Day? Yeah, kind of.

I can barely move today. Not sure where my fingers are getting the ability, but I don't feel it anywhere else. Getting out of bed was a monumental effort. My eyes do not want to stay open. But as usual, my head is full of activity, and some of it wants to come out and play, so here I am.

I think there are several factors contributing to this dip. One, a relatively busy week; two, stress; three, change, which leads right back to stress; four, yeah, I don't know - oh yeah! - the weather has been very gray and rainy (although surprisingly, the air pressure has been relatively steady).

So now you want to know about my busy week, the stress and changes, right?

Energy Reserves

We have word, and the word is good.

I am now at the phase in my healing where I am starting to build a healthy energy reserve! This is so super exciting, that I need to really be very careful what I do with that excitement.

When my Osteopath finished her treatment yesterday, she turned and said "Now we need to have that talk we have to have when people start really healing." The talk consisted of her explaining how the energy reserve works, how to cultivate it, and to not under any circumstance for any reason try to start anything new for at least 12 weeks.

So I am taking from now until 2013 as an extended break. I am determined to focus on integrating all the psycho-emotional and spiritual growth I've experienced over the last two years, to ensure that should I regain prior levels of energy, stamina and ability, I will continue on the path I have begun.

Identity Breaking

My Osteopath is back! I am a happy happy girl. First thing after catching up, was treatment to help my body integrate the immune-boosting-bug-killing pills I'm taking.

I am glad to report that I am no longer feeling ill effects from the Transfer Factor, and that one pill every three days seems to be working very nicely for me. Apparently, not having immediate ill effects, however, does not mean my body is actually responding as well as it could... thus the jagged ups and downs, and the extreme reaction to air pressure drops, and other such variable reactions to various stimuli. I can honestly say that I am feeling remarkably better this weekend.

What I am now processing is the idea that I would be very well served, especially in my healing, by not attaching myself - boxing myself in, if you will - by creating and re-creating identities and identifiers for myself.

Backyard Camping

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.

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.

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.

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.

Change and the Physiological Response

Oh. My. God! I just got it. I wrote the title to this, and I got it. See, this is why I blog! Wow.

I was about to write that my dear friend, Maggie, who sometimes comments on my posts, came over last night, and we both being so intrigued by life, brains, and personal growth, got to talking about my brain and symptoms, and those of someone close to her with a mental health issue, and how they compare (a lot of them are frighteningly similar). Then I wrote "Change and the Physiological Response" and I flashed to this morning, and my involvement with the Montessori Canadian centenary celebration, and my involvement with people in general, and my distinct need to cocoon, especially when flaring. It all makes sense now.

Ok, let me go back a bit. Before I went into a state of extreme healing, I had some resistance to change, as we all do. However, I was also incredibly spontaneous, and made a real effort through most of my adult life to let go of that, and I was quite successful - you have to be to a) live with my family, and b) work in a Montessori setting. No option. At all. But since I've been home, I've been getting this really strong reaction to the slightest unexpected situations. I know how it comes off - it comes off as me being cranky and stubborn. But it's not - it's an actual physiological response.

Overly Sensitized Day

I am having a rough day today. And the last little while, I've been feeling rather resilient, so I'm hoping this does not last.

Last weekend was crazy busy for a healthy person, never mind me, and yet, I managed to get enough rest periods in there, and had a really good week, too. It was pretty productive, and restful and peaceful, and I felt really good, about what I did and didn't do. I made huge strides in terms of my sensitivity towards other people's feelings, and was able to tune into my own when I needed to. Very cool stuff. I spent the week in a very balanced way, and it was gooood.

It's even cooler, because there were emotionally critical situations both at school, in my online community, and in my support group this week. I managed to not take ownership of them, though, and keep focused on how to help others while still helping myself and not overextending. All the energy I previously would have directed to trying to fix it all and to keep anybody from feeling any pain was instead able to go into healing, which is exactly where I need it.

But yesterday, the weather in Toronto went crazy. It's as if it saved up all the rain that we did not get all through spring so far, and threw it all at us in one big huge stormy go. Traffic lights were out, there was quite a bit of flooding, and the roads were slippery and the wind was really strong.

So of course, I went for a nice loooong drive!