This one is a real cold

About a month ago, I wrote about the cold symptoms that turned out not to be a cold at all, but an overstimulation of my immune system and about how it's really important that I learn to actually feel the oncoming of a cold, so I can make adjustments to my meds to avoid the escalation I experienced a couple of months ago (http://flylittlewordsfly.blogspot.ca/2014/04/the-cold-thats-not-cold.html).

Today I'm writing because I am awfully proud of myself, and I want to share that. Last week, I felt it. Before the big symptoms hit. When it was just the teensiest shift in how I was feeling - a touch more congestion, and the vaguest sensation of a tickle in my throat. I asked for support in making the decision not to start up my immune meds again, cancelled my appointments, and settled in to wait and see.

Today, I feel like absolute crap. My sinuses are clogged, my throat is ugh, my ears are popping, I'm sneezing and coughing... you know... the classic cold. All of which as you know makes my regular symptoms that much stronger. And now I'm waiting and seeing again, hoping that by not starting up my immune meds again, I will not go into that cycle of overstimulation that ends with me on the couch for two months.

It's not pleasant in my body right now. It sucks to be feeling this way again. And yet I'm less frightened than last time. Because I know. Or rather, because I knew. I sensed something brewing and was prepared for this. I can also sense that it's not depleting my energy reserves - not yet, anyway, and I'm confident I'll be able to tell if that starts to happen.

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.

Oh you're done with that cold? Good, here's another one!

Well, my cold stayed. Lasted long enough to send me back to Mom and Dad's. The plan for staying one day turned into three weeks and counting. Then the cold turned into a sinus infection. The good news is that I noticed! I was able to get on the antibiotics before I was completely out of it. The other good news is that the antibiotics did their work. The bad news is that just as I was finishing the antibiotics, getting my appetite back and thinking going home was close, I caught another cough. I seem to be at the end of this one, so hopes are rising... but I'm still here, watching carefully to see if this one is going to sneak up and take hold in my sinuses.

Here's the really scary part: this is just what happened last year that set off my 9-month stay at Mom and Dad's. It's really really hard not to think about that. It's really hard to stay here, and now, and not go back to last year, or forward to nine months from now.

As for now, well, tomorrow we have over a dozen boys descending upon us to celebrate my son's 11th birthday. I want to be there, and at the same time I want desperately to hide away in a quiet(ish) little corner somewhere.

Ah well.
Thanks for following along.

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.

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.

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!

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?

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!

Stairs and Swelling

The last couple of days have been amazingly good, in terms of my energy levels, and mood. I feel like things are coming back together for me, and I could not be more pleased. However. The last few days have also brought on an eczema flare like I haven't had in 8 years.

I woke up on Monday, and my ears were a little itchy. Then in the afternoon, so were my hands, and my cheeks a little. And then the red splotches appeared. In what I can only imagine was a mis-guided effort, I iced one of my cheeks last night, because it was burning. When I woke up this morning, I could barely see out of that eye, it was so swollen.

In the meantime, this week, I have had some really great moments; I surprised myself by making it all the way up the stairs in one go, I went home, I did some pre-packing for the trip to Cali, and I even brainstormed with my Mom on school stuff.

Mold update...

It's been a while again... I guess there has been so much going on, and getting the keyboard set up with the tablet somewhere comfortable is not as easy as I thought it would be...

But today, I was debating whether to take a shower or go for a walk (and as my Mom said, it sucks that it's actually a choice I have to make), and I decided instead, to put my afternoon's energy into this. And so I am sitting outside, blogging!

I brought out one of the little kiddie chairs, and an old (clean!) changing pad, and I'm sitting on the ground, and the tablet/keyboard are on the chair in front of me. Much less expenditure of energy than going up the stairs to my mom's computer, and I get fresh air to boot! Yeehaw!

Updates: mold, naturopath, California, sleep

So long since I've written, and in part because there is much and yet little going on.

There is little going on in terms of my physical and emotional condition; I am still fatigued, malaised, in discomfort etc etc. I am still struggling with sleep. I am still dealing with the emotional fallout of this long relapse, and the discovery of mold.

Yes, that's the big news - we had people come in, and found high levels of mold in my basement, my bedroom, my parents' basement, and to a lesser extent my living room and the bedroom in which I sleep at my parent's house. Joy oh joy. It's not like we already had enough to deal with. And I'm so glad I can say "we" instead of "I".

Insomnia and my Overactive Brain

I was good last night. I really was. I stayed away from the screens. I played sudoku to calm my brain. I lit a candle, played quiet music and did some stretching and breathing. And I turned out the light, blew out the candle, and lay very very still. But my mind did not.

I tried relaxation techniques. I tried breathing. I tried shifting positions. I tried tuning out. I tried going with it. I tried letting go and letting be. And when I looked at my clock, at 4am, I thought, this is stupid, and got out my book. I finally went to sleep at 6am. I'm trying not to use the melatonin or other sleeping aids, because my Osteopath said to, and I trust her. But if this continues, I may just have to break out the pills again.

Today, I've had a couple of moments of peace - slow thoughts, moments of no-thought. But it doesn't take long at all for my brain to come crashing in again; I have to empty the dishwasher, I'd love to go out and buy a latte, too bad they out of tortilla chips, I should check my e-mails (cuz you know there are so many urgent ones waiting for me - not), expertise is overrated, Montessori changed the world, doctors suck, what if this thing in Cali doesn't work out, I wonder it there really is mold in here, blah blah blah blah, and it all happens so fast half the time I can't even identify what my thoughts really are. Except for when they become diatribes, arguments and essays in my head, which go on for-e-v-e-r (kind of like my longer musing posts, and thesis presentation). I know this is all a cover for something. It's a cover for fear.

I'm still here

It's been longer than usual between posts, mostly because of two factors: I still feel really crappy, although my emotional outlook is improving; although I now have a tablet (thanks to my brother in law who had an extra that he kindly donated to the cause of preserving my sanity) that allows me to actually get online at my parents' house without dragging myself up the stairs and sitting up at a desk, typing on a tablet keyboard is un-fun enough to stop me from writing. So now that I am home for one night (avoiding the cleaning lady who is going to arrive at my parents' house nice and early in the morning), I find myself yearning to post. About something. Anything. So... hi! Welcome back!

My physical reality has not shifted much since I last wrote unfortunately. I am having some moments of better energy, and of lessening of symptoms, but for the most part, I'm still really struggling with daily life. So welcome to my little pity party: My right foot is dragging again, quite a lot. I think it's a neurological thing. I'm shuffling, and I walk about as fast as my grandmother (who is turning 92 tomorrow - no - today! Amazing, eh?!). I get very lightheaded when I stand up at anything more than a turtle's pace. My head is all spinny, and my appetite is up and down. Walking to and from the kitchen has my heart racing. Climbing the stairs is a real ordeal. Sitting up for dinner makes me want to lie down again, and most of the time I am lounging, reclining or lying down. And that's only part of it.

Mold? California? So confused...

I finally got in to see my osteopath regarding these colds that won't go away and she laid down a potential shocker. Turns out, this could be mold masquerading as a cold. Oh joy.

I know nothing about mold, beyond that it's harmful, can cause all kinds of yucky reactions in humans, and is ridiculously hard to get rid of. I really really hope that I will not have to learn more about it than that. I will find out whether that is necessary after checking my and my parent's houses. Sigh. Really, none of us are up to dealing with this right now. But you do what you have to do.

In the meantime, a great many very interesting things came out of our session, and I am finding myself at yet another moment of decision making - crossroads like. This whole healing thing would be so much easier if there were just one expert who would tell me what to do and how to do it. But Nooooooo. Not only is this particular condition so mysterious and complicated that nobody yet understands what it is, or even if it is one single thing, rather than a bunch of different yet similarly presenting illnesses all being lumped under one name. So there is no one book to read, no one path to follow.

Overexerted, but for a Greater Purpose

My physical being is in a really serious mode of compensation. My body is trying so hard to heal itself, that it spares no energy beyond that and the basic task of keeping me alive. Part is the cold of which I am still complaining. But part was a choice I made this weekend to overexert, and which I still think was probably worth it. I'd just forgotten how bad this thing could really get. Post-exertional-neuro-immune-exhaustion has hit, and hit hard.

My cane has made a reappearance in my life. The last few days I have made it up and down the stairs very slowly on my bottom. I timed it, just to see. 6 minutes to get up the stairs. No joke, no exaggeration. 6 minutes. One flight. But I can still do it. The stairs have not gotten the best of me.

My boy and I are at my parents' house again, being fed and coddled. It is absolutely wonderful to wake up and find a cup of coffee already made and waiting for me at the kitchen table. It is not, however, so wonderful that my laptop doesn't work here. So to use the computer, I dragged myself up the stairs.

Seriousy? Another Cold?

I thought I was done with that! Surprise surprise, just after I wrote the last post about finally starting to recover, I get hit again. Same thing. General increase in symptom severity, general decrease in energy and predictability thereof, yada yada yada. Oh joy.

Today I used my cane, for the first time in a few months. That's how I'm doing.


I know there are people out there a lot worse off than me. I know how fortunate I am to even be able to pull myself out of bed, never mind actually climb the stairs in my house. As a good friend keeps reminding me, "any day above ground is a good day." I know that this does not define me. I know that this is another bump in the road, and certainly not the first or worst bump I've traveled over.

But it sill sucks, and I am finding myself once again going through the stages of grief, albeit mildly.

I don't think I have anything else to say about this right now. Just yuck, yuckers and yech. And I really really hope this is a light one, that will pass as quickly or more quickly than the last one, and not one of those that my naturopath was saying have the potential to knock me out for a couple of months.


Hot toddy, here I come.

Another Cold

I was planning two posts this week, one about my observation at my son's school, and one about my latest Osteopathy and Gestalt sessions, but I got sidetracked in a major way by a cold that hit me... when was it?... Thursday, I think... No really sure.
(Warning: little bits of potentially offensive language below - I'm feeling particularly expressive this morning, perhaps because I haven't been able to speak my mind fully in a few days)

I feel like I'm in a daze, and it's not brain fog - it feels different - but it's similar. I am more distracted and my memory is shorter than usual. I'm forgetting lots of things - I know I am - that I need to do or deal with... more than usual, if it's not sitting right in front of me with flashing lights, it doesn't exist. Until someone asks, and then I want to slap my own forehead and moan "oh shit, not again. But since that someone is usually my son, or within hearing range of him, I do actually hold my tongue.

Life getting in the way again

Is it possible to be doing better and worse at the same time? It must be, because I am.

Last week was one heck of a week. After the lice infestation was cleared out, and I buzzed my boy's hair down to almost nothing, he was hit with the stomach flu that's been making rounds at the school.

11:30pm, the poor thing stumbles out of bed, and throws up all over the bathroom floor. Man, I hate it when they don't make it to the toilet! So there I am, already in a state of compensation, trying to calm and settle him back down, and clean up the bathroom before things get really smelly. I managed. Somehow. 2am and here we go again. Except this time he did make it to the toilet, which made me quite a happy mom. What didn't make me so happy (although it did in a way) is that he felt the need to crawl into my bed after that - while it is lovely and comforting and all that, it makes for a much less deep and restful sleep for me.

Creepy Crawlies

The lice infestation that has several schools in the area sending kids home for a couple of months has finally hit my house. I'd been hoping against hope that we'd be spared. But alas. A part of me is laughing - I think it's funny. I really do. Part of me says no big deal. But most of me wants to go crawl under the covers with a good book and just stay there.

We managed to avoid the first two rounds of kids being sent home, and I've been checking my son's head every night as we watch TV. My sister's children have all had it, and she keeps fighting them off, but each time we think they're clear...

Tonight, as he was itching at the dinner table, I decided to do a more thorough check and did indeed found two nits. No problem, I thought, having experienced this before. Two nits is not so bad. I thought I'd just comb him out tonight, and do a treatment tomorrow with my niece and nephews.

Post-Exertional Neuroimmune Exhaustion

Along with the new definition of ME, there was a change in what we used to call Post-Extertion-Malaise. Now, having more understanding of what it actually is, the experts are calling it Post-Exertional Neuroimmune Exhaustion (PENE pen׳-e).  In my non-professional opinion, this is a far more descriptive term for what I've been feeling these last days, and I welcome the change; terminology really does affect how we sense things - hence the science of semiotics.

The new name, being more specific, has indeed changed my perception of the effects of exertion on my body. Last week's Exercise ECG has had me flat out since Thursday (that makes 5 days now, and counting) to the point that I haven't even posted anything here, and have severely limited all the other activities that usually make me feel better. My experience of this crash has been different, because I've been able to really hone in on what I'm feeling, and most of it is indeed related to my neurological and immune symptoms, and that is where the malaise and fatigue are coming from.

Synchronicity being what it is, I had been thinking about this post when I logged into the But You Don't Look Sick forums, and saw a post in which MairiD'Anaxemurderer (gotta love the moniker) described what fatigue feels like (quoted with permission):