About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, July 27, 2012

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.

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