Friday Tidbits: Coping and Thriving

OK, I know that I can be strange at times, indeed very strange. That's what this dreaded CFIDS/ME/fibromyalgia life experience has done to me.  But I'm here to pass on a bit of that strangeness, which actually are survival methods, to the current generation, sort of handing off the baton, so to speak.  Make of it what you will.

• "Mind-games":

I got to the point where I was starting to go out almost NEVER.  Going to the ob/gyn was about as exciting as life got fired up around this period.  The coping mechanism/mind game I came up with, especially as I had a beautiful closet full of incredible clothes, was a bit unusual.  

On the days I felt well enough, I'd hang out an outfit on the outside of the closet door at the foot of my bed so that I felt that in some way I was still indeed a part of the world and could actually "enjoy" wearing my clothes the easy way: clothes had become difficult to wear because my skin and nerves were just that sensitive.  

It sounds crazy but I didn't even realize what I'd been doing and it helped me survive one of the worst period of my 38 years with this nightmare.  I most certainly hope that I'm not the only person in the world for whom this sort of "therapy" worked?!?  (And do I get extra points for unique thinking?)

• Attitude: 

I find that at times the smallest, unnoticeable and innocent act can throw one over and mess up carefully-conceived plans.  I had moved my son's old room armoire katty-korner to the wall and that tiny detail gave the room a completely different look and feel.  However, not too long after, a young lady was helping me with decluttering the room, as well as other rooms, and in her enthusiasm, she took it upon herself to turn that armoire back against the wall to it's "original" (read "boring") spot when I was busy elsewhere.  

I'd been making great strides with that room.  However, because it took so much energy and psych'ing myself up for this project, it took just the smallest "negativity" to make me feel as if I were a balloon that had been popped and the air was escaping too quickly, just like my hard-earned resolve.

From now on, I must try to impress upon my family how important attitude is.  They are supportive, yes. However, although they understand, somehow they do NOT understand how difficult it is for someone like me to do anything at all. Though they understand how ill I am, they are somehow unaware that a look with a puss on it's face or innocent words such as "Ugh!  I'm just so tired" can undo any "health credits" I had so carefully worked on building up in order to do a small project.  And no, two years later, that armoire is still in the "wrong spot" and the room is still a mess.  I may put this room on my to-do list this weekend if we can manage to stay healthy!

• The Lists!:

Time gets away and before you know it "C" is coming up - soon (cringe!).  Well, while channel surfing a few days ago I saw a couple trying to sell their house.  The important thing is that after a not-so-fantastic house appraisal the news station gave the couple a to-do list to be completed within 48 hours.  I saw that list and drooled!

That's it!  I'm going to start writing a list of things that MUST get done during the weekend, but very easily obtainable goals and not put down "peace in the Middle East" as a weekend goal.  However, taking in the potted tropical plants into the house for the winter and decluttering 15 items of the obviously no-longer-worn to donate is, I believe attainable, and will be on the list. 

And so you have my Friday Tidbits!  I do hope this list will be a good inspiration to some, or at least a great chuckle!

Here's to everyone having a fantastic (and productive) weekend.  I most certainly hope that everyone's feeling their very best, only better.  Ciao and paka!


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Note: above image from Polyvore.com and pinterest.com.

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.