Wednesday, August 20, 2008

Waking Up On The WRONG Side Of The Bed...


Guess which side of the bed I stepped out of this morning? Yeah, I know the "Wrong Side" is really the "Right Side" in the picture up there...I'm directionally challenged.


But as I scraped the proverbial "poo" off my feet, I became very aware of several pains in my body. The Bewitching nose twitching/vibration was buzzing at full blast as well as the tight, invisible corset that has been developing around my upper chest. And my neck felt as if it had been duct taped to my pillow while I slept (my 3 hours) while the REST of my body had obviously played a full game of toss about.


I tried to entertain the notion of *business as usual* and go about my daily activities in preparation to get to work...but my body was having a board meeting of its own, failing to inform me earlier that it planned to shut down for some kind of inventory today. It was busy tallying the multiple nights of missed or restless sleep, recent stressors, the recent heatwave in Seattle, and a few "other" issues on a hidden agenda. The more I tried to force my body to proceed, the louder the inventory count became.


On days like today, I find myself mentally punching my body with words like, "lazy", "pansy", "weakling", etc. And my body throws a great punch at my mind as well, creating confusion and word-finding difficulties...making speech and conversation quite comical. It's a no win situation for either player really.


So, I called my employer and took a "sick" day...which, in itself, seems ridden with guilt: SICK. I'm not really "sick" by definition (or at least the definition I grew up with)...I have no fever, no pus draining, no cough, no broken bone, no vomiting, no surgical incision, no rapid heart rate, no pain with urination, no diarrhea, and no need for immediate medical attention. My body just aches and I have no reserve energy available to force my body out the door...it seems to be having a rolling black out from overuse on my internal generators.


It's hard for me to call in "sick" on days like today. I have great difficulty justifying to MYSELF a rationale for not being able to push myself hard enough to get to work, let alone provide plausible excuse to my employer. There ought to be a clause in the Multiple Sclerosis contract that just allows me to call in "M.S." and leave it at that. And my employer doesn't ASK me why I'm taking a sick day (by law, it's a no-no)...I just feel guilty that I SHOULD provide a reason. I suppose if I could provide a rationale to THEM, maybe then I could accept the reasoning, too.


The worst is when well-meaning friends call and ask, "What's wrong?" It would be a much shorter list to establish "what's right". I find myself trying to prioritize the *list* in an order that would most make sense to them..."Well, my neck really hurts, and I have a...what's the word? Oh yeah, TIGHTNESS around my chest, and my nose has this buzzing/twitching thing going on that's annoying but not painful, and I haven't been able to sleep comfortably for more than 3-4 hours a night, and my calves are really stiff, and my mind is in a...oh, you know what I mean...misty cloud? ("A fog?", comes from the phone.) Yeah, a fog...and I'm just too tired to care about any of it today."


I tend to always list the FATIGUE FACTOR last...nobody *gets* it anyway. At least not my generally healthy friends. They MEAN well, but they really just DON'T get it. I sometimes hear things like, "You just need to get out more"..."maybe exercising more would help?"..."oh, man, I know what you mean. I didn't get any sleep last night either"..."what have you been doing to make you feel so tired?" That last comment is priceless and sometimes almost causes me incontinence. How do I explain to people I most likely have been doing ABSOLUTELY NOTHING THAT WOULD QUALIFY IN THEIR BOOK as an activity to "make you feel so tired"? But, they are my friends and they DO mean well (I just ignore or sarcastically *betch* at those that are NOT my friends, who have lame-a$$ed questions/suggestions.).


I DID eventually get on the *horn* this afternoon and email/call Club Med to begin what may become a very lengthy *betching* process about my TYSABRI...that entire issue, I am certain, did NOT help my current bodily complaints. I know at some point in the night, while I was contemplating all possibilities of PAYING for my TYSABRI, I DID solve the world hunger crisis or at least devised a strategy to make a dent in it. Yes, I did! I came to the conclusion that, if I simply STOPPED EATING (which would save me several hundred dollars a month that I could put toward TYSABRI infusions), there would be more food available for everyone else. These are desperate times...LOL


Dr. She Who Will Not Be Named did email me a "no" when I asked her if I should cancel my infusion appointment next Friday, so maybe SHE'S planning on paying for my medical care now. I need to know if SOMEONE besides me is going to pick up the tab or I can foresee TYSABRI causing a 1:1 ratio of developing PML (Payment Might Lapse).


Off now to crawl BACK in my bed (and try to avoid stepping in that matter on the WRONG side!) and see if I can solve the crisis in Iraq...since I've already got a pretty good plan in place on that world hunger issue...

5 comments:

Spaz Attack said...

Hey there Melted Cheese,
As one of your MS 'peeps' I certainly know exactly what you're going through when having MS days and fatigue. I used to try to explain it to well meaning friends ... the good friends I've known for years are starting to have a sense of what I mean, because they can see for themselves the different "ME." Acquaintences I just get irritated with and say, "Truly, YOU don't have a clue -- I certainly wish I was clueless, too." And leave it at that. IT is irritating.
No surprise you had a bad night and woke up bad -- I've no doubt it was/in direct relationship to the money/insurance/Tysabri woes.
My body and mind were in a terrible state when I had to go off Copaxone because of NO health insurance. After a couple months I realized it wasn't the end of the world. THANKFUlly I had a family member pay for my symtom meds (muscle relaxer and pain), and my PCP keep me supplied with anti-d's through office samples until I was able to get back on insurance through DSHS. otherwise the scales probably would have tipped to the point I dropped off permanently.
Tell Dr. She to put her clout to work and insist that you (her favorite neurotic patient) no have to pay that copay!
If that don't work out I think it important not to go broke by continuing the Tysabri. In my unprofessional but afflicted opinion your meds $$ would be better spent on drugging you at night so you can get your 8 to 12 hours of drug-induced SLEEP/rest/coma each night. Best to Give your body and mind a true time out. And if you OD in your sleep all the better. Just think...no more pain in your neck - HA

Denver Refashionista said...

I love the way you make me laugh even when you feel like crap.

I totally get your calling in sick mind set. I often have done the same thing. I even found a ride to work when I had vertigo so bad the world was sideways and I could barely even see.

I also get the whole fatigue issue. It is annoying to explain and I keep thinking "this is ridiculous, I just slept 12 hours and I feel like I need to go back to bed."

I hope your symptoms recede with a day of rest. Don't feel guilty for calling in. That is my new resolution, " If I am not 100% I'll call in."

LISA EMRICH said...

I'm sorry... but LMAO.

it's not cool that you are feeling this way, but it is cool that you are able to face it. It sucks to be sick without actually being sick. Very few can truly understand.

Blinders Off said...

This post sounds like me when I use to work. When I would force myself to go to work on days like you are having now, I never completed a full day. A co-worker or my daughter would have to take me home.

Like you I felt I owed an explanation instead of calling in I am taking a sick day. It also became obvious co-workers thought I was lying and being lazy about working because they did not understand my illness.

I finally called it quits with working 8 to 4 once I realized I could no longer give a 100% and went out on disability.

You did the right thing for yourself today and you told it in a humorous way.

Blindbeard said...

How funny! I have come up with some great solutions myself while waiting for my "night meds" to kick in. I have such horrible RLS and the meds for it assure me a beautiful night of sleep as soon as they start working. So far I have come up with a great plan for new facials (clogged pores being a horror of mine), and I keep coming up with new ways to rearrange the furniture throughout the house to maximize space while minimizing what I will trip over. Your solutions are so much more noble than mine -- world peace vs. clean pores. You win hands down.