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!