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.

Distance, Effort and Mind

I had this thought the other day. I was sitting in the car, watching my son and his friend run to the lake, and as they got smaller, it struck me... things seem a lot farther than they used to. I lived in a house in University that was farther from the lake than I was at that moment, and I walked to the lake all the time. I walked all over campus. Heck, I used to walk to work when I lived downtown.

I wanted to go down to the lake. I wanted to sit on the bench at the boardwalk and take it in. And it was just too damn far. And that was ok, because if I'm honest with myself, it had already been a busy day and I had already done a fair bit of walking. And so I started thinking instead.

The Cold That's Not a Cold

I had a great phone session with my doctor in California. He suspects these colds I'm having are not all colds - that the symptoms are actually due to over-stimulation of my immune system due to a combination of the viruses that hit me and the meds I take to stimulate my immune system, and of course, also due to the nature of ME. Oh yeah, and to those pesky mycotoxins in my sinuses.

You see, part of what causes the fatigue and neuro-immune dysfunction has something to do with the production of cytokines being not quite right. There are already too many. So when I get sick and my body starts producing more, then there's a really big overload. Which leads to greater fatigue, brain fog, and more viral symptoms. Apparently this cytokine thing also affects cortisol? And together they make sleep really tough to come by. So add a layer of lack of sleep to all that. Oh yeah! And then when I take my immune-stimulating meds, even more cytokines get produced, and I end up a big gooey mess. I'm sure there's a lot more to it than that, but that's my understanding at the moment.

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.

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!

Quieting my Overactive Brain by Shifting Attention, and the End of My Insomnia

It is interesting to me that the post I wrote about insomnia back in February is one of the most-read pages in my entire blog. There seem to be an awful lot of people looking for solutions to insomnia related to illness and/or overactive brains. Insomnia, true insomnia, is devastating (Fight Club wasn't all that far off!). I want to thank the reader who e-mailed me privately to tell me how she thought she was alone in this; you inspired me to come back and share my answer to you with the rest of the world. And then some :)  Because in thinking about what I wrote you, I realize that finding a sleep solution was very much tied in to how I distract my brain, and how different that is from truly quieting it. I am hoping to find a more permanent, quiet-based sleep solution that requires no distraction in the long run. In the meantime, though, I'll do what it takes to get the sleep I need!

I did find a solution that works for me, for now, and since there seem to be so many people looking, I will share it, even though I don't believe there is a one-size fits all.

First, I followed all the standard Sleep Hygiene rules - I'm sure if you've been struggling with insomnia, you know all about these. The most impactful of these for me was leaving my laptop downstairs when I went to bed. None of that was enough for me, though, because every time I turned out the light and lay down my brain started up again. So I threw out one of those rules, and got out my book again. Here's how I got back to sleep:

Universality and Uniqueness

Sycnhronicity is amazing. There was a lesson I needed, and the universe conspired to put certain people and things in my vicinity so that I could see it, should I choose to. You know I choose to.

So here it is. We are Universal and we are Unique - yet another paradox to ponder. The common threads, the big picture - when you look at life like that, you can see it - when you live openly, it is there. This is my story: I was born whole. I was broken. I hit rock bottom. I remembered who I was. I chose to be that, and I evolved. Life had ups, and downs. I continue to evolve.

It's a simple story. And common. And yet, the details of it are unique to me. Where and when I was born, my familial heritage, my teachers, my influences are only mine. My DNA is unique, my fingerprints, my physical being - there is only one like me. Even my sister and I remember our childhoods and the adults that shaped them very differently, and we were very close, in age, and emotionally. The reasons I broke, how I hit rock bottom, how I came to remember and the ways in which I evolved are all in detail only things that I could have experienced. My thoughts are my own, born of each individual experience on this planet. Mine and only mine. Nobody can ever share my unique perspective. And yet. My story is universal.

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?

Introducing the Hedgie Baby

Yesterday was, as you can imagine, a big day in our family. We went to a rescue center to pick up our not-so-gently-used hedgehog. She is a real sweetie, especially considering what she's been through.

The drive out there is pretty long, so because of that, and because he just loves them so much, my son asked my parents to drive us. Which was good, because I just knew the whole day would use up a load of marbles. The nice lady at the rescue showed us how to bathe her, clip her toenails, and so forth. She also sourced everything for us, which for a spoonie is a fantastic thing. We came home fully equipped!

So far, the only extra thing I need to get used to is the constant noise of the pattering feet on the wheel. Other than that, a bit of out-of-cage time every day, and we're good to go.

Rambling Update

I've been wanting to write for a while, and I just can't seem to figure out what it is I need/want to say.

I am doing pretty well. Survived the Jewish and family holidays, and all the discombobulation of schedules that they inevitably bring. Adding to my disorientation were changes in my son's schedule due to relatively mild complications in his stepmom's pregnancy and impending birth of his half-sister. I was sure it was Monday all day Wednesday. It was not. It was indeed Wednesday. I checked. Various times. It was Wednesday every time.

Health-wise, I was very relieved to hear, and am so super happy to report that these shifts and changes did not deplete my slowly yet steadily growing energy reserve. YAY! Although they did tire me out, and I had a hard time maintaining my levels of peaceful acceptance. Especially when my house was playdate central.