When Will I Be Strong?

Putrajaya, Malaysia, all beautiful at night....

I do have to laugh at myself. You see, as soon as I make a list of things to do, I am doomed. Doomed, I tell you!  Nothing ever goes according to plan.  And if you recall, I actually made a list the other day on how I would start to work my way back to feeling better, fool that I am!

These last few days have been particularly bad days, perhaps the worst I've had in years, bar the first couple of weeks after my November/December surgeries.  I know part of it is the Herxheimer-type reaction: I'm having a huge reactivation of whatever virus caused this stupid illness in the first place, a vicious full-blast reactivation most likely caused by the stress of my trip, and it is, paradoxically, getting worse as I try to get myself back on track to the place where I feel my best.  That's not asking for much, except it obviously IS in my case.  It's all coming at a price.  I feel as if what I'm going through is much like what I've read it must be like when a drug addict tries to detox.  I want to crawl out of my skin.   At other moments, I feel as if my skin is turning inside out.

All of this has been further complicated by the fact that when I get too sick and am in too much pain, I forget that I need to take my pain meds. There's always a price to be paid if the pain gets to be too bad, when you end up "chasing" the pain.  This is so well known and understood that it was THE reason I was such a ferocious lioness during the weeks my daughter was at the "major medical center," so often and for so long: the pain she experienced was off the charts and I knew first-hand how hard it would be to get back to a place of tolerable pain if and when she was given her pain meds even ten minutes late, much less a half hour to an hour late.

So, it's ironic that I forget to take pain meds when I most need them.  Usually, this isn't a problem because hubby comes home, sees me and knows I need to take my pain meds, or my daughter will call, hear something off in my voice, and immediately becomes all bossy-like, instructing me to take my pain meds.  My doctor gets frustrated with me that I don't take my pain meds as often as I should. Deep down inside, I think that a part of me feels that when I take pain meds, I'm accepting defeat, a very wrong way to think, I know!

At any rate, there were entirely too many days in Malaysia when I didn't take my pain meds, after hubby flew home, because I was in too much pain to realize I needed them and then during the various flights heading home it was just so much easier to skip too many doses.  All of which is to say, my body has been chasing the pain big time, and obviously too long.

I need to find/remember all in my arsenal for improving. I had forgotten, for example, all about my nutritional IV's and need to go that route for a while. I need to remember to take my AM magnesium (not in the PM as it counteracts the Neurontin). I need to work harder at trying to establish a sleep pattern, which is also ironic: I'm just too sick right now to work so hard at falling asleep.  To me, sleep is major labor.  I don't have it in me to work that hard at the moment, but I know I must.

Now gee, this was a cheerful post! So, if you've made it this far into my complaints, here are three rather random tips that work for me that I think can help anyone:

1. Consider using an air cleaner in your room. I have been using these for years - but of course had forgotten about them in the last couple of years of our familial insanity. I need to dig one out, pronto. The unit I like to use in my bedroom is portable and I can immediately feel that I can BREATHE. It also cuts down on environmental pollutants, as well as dust, etc.  (The filter is absolutely disgusting when you change it.)
2. Check out your Vitamin B-12 level as well as your magnesium levels. With the magnesium, make sure your doctor uses the RBC (Red Blood Cell) test.  I'll be discussing this in future posts.
3. Get yourself a notebook for lists. Just because I've been struck with the "list curse" doesn't mean the rest of the world has been!

And here's to all feeling the best they can be, only better!  Ciao and paka!

My favorite of all the air cleaners in the house, the Sun-Pure.

The Uglies We Don't Want To Talk About

Because of a fancy Flower Show, each night there were extremely impressive fireworks.

Since this IS a CFIDS/ME/fibro/insomnia/pain blog, I should occasionally, at least, talk about some of the "nasties" out there.  Oh, and give my take on them as well.  After all, otherwise, why are we here, other than to hear about my wild adventures and experiences?  Yes, yes, I hear people all over saying, "no, no!  Be your charming self...we don't need the nasties!"   But proceed I will.  I do so hope y'all can forgive!  (This, I'm afraid, is my feeble attempt at humor!)

So on with it!

This year I've been getting a lot of aphthous ulcers in my mouth, otherwise known as "canker sores." I've not really had them a lot before, intermittently off and on over the last few years, though relatively rarely, usually after something silly like accidentally biting my tongue. But this year, they're so bad that my entire tongue has been affected by them, along the ridges of the tongue, the back, the sides, the front and throughout, repeatedly. They can and do affect the back of my throat, the roof of my mouth, inside the cheeks, and along my gum line too, but not as often as with my tongue. They are painful little monsters, and it's gotten to be so bad that when they're in full-blown force, I have trouble swallowing anything whatsoever, including saliva and water.

I've talked to my doctors about them, of course, and have gotten sympathetic nods of understanding and I've been told that it's not surprising that I've developed this problem, especially after the huge amount of stress our family's been under for the last two years. My body is starting to rebel, now that it sees that the fight-or-flight mode it's been in is starting to abate (KNOCK ON WOOD!). But understanding this isn't helping much, so I'm trying to be a bit more targeted in my approach to keeping them at bay, as I'm convinced that there is more here at play than "simple stress."

I read in a few places that there are a few things that can contribute to the frequency of this condition and in doing a bit of my own research on them, here are some of the more interesting factoids/thoughts I've found and formed:

• Stress seems to be the unifying bad man - yes, stress, the mother of all evil, it seems, and to me, an all too often convenient excuse of science when something is not understood. Furthermore, stress is especially the cause of the proliferation of them. Mine can start with one or two and disappear, or the opposite, can, and usually, happens: they start multiplying and taking over like some weird version of a campy Japanese terror movie. I feel as if tiny little aliens are invading my mouth. Come to think about it, I suppose they are!
• Lack of sleep (the bane of my existence) can cause an outbreak.
• As disgusting as they sound, they are not contagious. (Whew!)
• They are often accompanied by swollen lymph nodes and even fevers...as is the case with me.
• And here I go with my political incorrectness - it's been a while! They seem to occur more often in non-smokers(!) Funny, I never had them before I stopped smoking, almost two years ago.
• Sharp food, such as toast or potato chips can trigger them, as in physical trauma. Actually, I've noticed cheese doodles are a culprit too. (Call me wild and crazy but every once in a while I'll get a cheese doodle craving...that'll have to stop!)
• Citrus fruit is a contributing factor. I forgot this one because it's so counter intuitive and got a terrible case, not surprisingly, on the plane flying to KL: stress, lack of sleep and orange juice was a winning (or is that losing?) trifecta. I also find this to be ironic because I so often drink OJ to boost my immune system. By the time I was on my way to Tokyo, my mouth was in such bad shape that it took everything I had in me to keep the tears at bay.
• Vitamin C has also been accused of being a culprit. I'm not happy with this little tidbit since one of my favorite facial treatments to reduce hyper-pigmentation (age spots!) and cause new cell turn-over, is full of Vitamin C. I've told myself that I'll watch it and not use this product if I have a break-out (THAT should be fun to see, given my memory, or lack thereof!) and I'll let you know how that comes along if there is anything pro or con here. I do know that what you put on your face does end up in your system, as I've tasted lavender oil, the papaya in a face mask or even the clay in a clay facial mask treatment.
• Because certain types of toothpastes (those with SLS) are suspected in contributing to these ulcers, I've tried changing my toothpastes a few times; I've also tried changing toothbrushes often, even though they aren't supposed to be contagious, as well as tried different types of mouthwashes, with alcohol - to kill whatever - and without alcohol - to just clean the area. Nothing, alas, seems to make a difference.
• These canker sores all too often are in for a long engagement, of at least three to four weeks, or longer. Worse yet, too often they'll be almost gone, and then bam! Right back again! For example, if I've not had sleep for a night and day (which is a frequent occurrence), they viciously come back.
• They also rob you of any energy. I couldn't believe that I was too tired to break the lock on the hotel bar and so had nothing to drink for close to 15 hours because I was afraid to drink the Chicago water: I'm not a prima donna...just someone who tries to realize how precarious my health is and, am, at times(!) reduced to being a slave to it!
• The lack of certain vitamins/minerals/nutrients (Folic Acid, Iron, zinc and Vitamin B-12) are suspected to be a cause...I laughed when I saw that - lack of Vitamin B-12 was funny since I get daily injections of Vitamin B-12 and my iron levels are fine.
• Celiac disease has been associated with these ulcers and my tests came back that I did not have it, just as I suspected. Neither do I have Crohn's Disease, nor do I wear braces.
• Dairy products are implicated. (When are they not?)
• Immune disorders are also implicated. I think we all know that one, but where does that get us?

So, what do I think? Really, I believe that no one really knows and that a lot of "causes" are thrown out there. I also know that I get rather annoyed when I see "stress" thrown into the mix because it comes all too close to throwing CFIDS/ME/fibromyalgia, and even sleep and pain, perilously close to the psychiatric wastebasket, just as "we" are climbing out of it!


In the meanwhile, I'll continue to monitor this nasty turn of events.

Notice the purple triangle up top and then the red one on the bottom.   This was a bridge that changed colors every few seconds, going from white to red to turquoise, to purple.... extremely beautiful as well as mesmerizing!