Friday, August 29, 2014

It's 3:49 AM Do You Know Where Your Skippy Is?

In front of her computer, of course.

I know you probably aren't surprised Tadpoles, considering how you know my woes of insomnia.

But?  I have to tell you - since I got back - I have been sleeping an inordinate amount of time.  From 10ish at night until the rooster [across the street] crows. And then, after I got everyone out the door, I would collapse back into bed and sleep until 3 or 4 pm.

It was the best thing in my world.
Sleep. Glorious sleep.
The kind of sleep where you drool and wake up stuck to your pillow because you are so exhausted you didn't move in over 6-8-10 hours.

I haven't had that but once in a hoodle in over a decade.

And yet?  I had it for almost a week.

The thing about sleep, we all know, is that it does rejuvenate a body. Does it not?
However, you can't make up for lost sleep by sleeping extra after a few days of lack of sleep.

For example - say, you pulled 4 twelve hour shifts and only slept 5 hours a night that week.  You would be dragging at the end of that week, but sleeping for 15 hours on Saturday isn't going to make up for the sleep you lost working those shifts.  It doesn't work that way.

Ha.Ha. My body didn't get that memo and decided that "Oh! Lucky charms! She IS going to feel better if we put her in a semi coma for a week."  I can't describe what it is to be without sleep, but you do get used to not sleeping and you get accustomed to the tiredness and fatigue that goes along with bad body parts, especially when one of those is your heart. You compensate, I suppose.  I usually fade around noon, from pain and fatigue and then by the time bedtime rolled around - bedtime for the family - I was too exhausted and in pain to sleep.

Then came the sleep-a-thon week.

Which did cause a few problems.  I started to laugh as I wrote the last sentence imagining y'all saying "Where is the 'BUT' Skippy?"  Yes....I know. And that introduced it, did it not.

After the past few weeks of being immobile and stationary, then finally able to sleep the sleep of a Disney princess, I had so much energy.  SO much energy.

Here is my failure. It is fake energy.  It is pretend. It is any word you want to pull out of your thesaurus that means it can disappear in the snap of your fingers.

The one thing I crave, desire, want so much is to be the old me. Even after years of dealing with this and experiencing getting worse, I still want to be me.  Y'all have heard this refrain too many times. I know.  I can accept a lot of things [don't get me started] but not this.

Fake energy being what it is I was running around, literally, driving Ozcarz, grocery shopping [alone!] at more than one store, laundry, cooking, baking. . .you name it, I did it. Like the old me.

And the family noticed.
And the family was happy.
Happier than I had ever seen them in quite a few years.
"Look! Old Mom is back.  Doesn't your laundry smell so much better when Mom does it? No wrinkles too."
"Oh...fresh bread with dinner, everynight!"  "Pie! How many pies has Mom made?"
"Who mopped the kitchen floor? Mom? Really?"

Then last night it started.  The pain. The ache. The one thing I can't escape, nor fall asleep to, unless I pass out from exhaustion. Every bone, joint, muscle, follicle screamed when I laid down to sleep.

I can wait for the exhaustion part. I have done it before. I get goofy as sh*t, but it does come, eventually and I get a few hours to reboot.

So as to not be boring. . .allow me to continue

The spasms came next and those are their own special treat.  They are a newer occurrence, since last summer, and are a progression of the disease[s] which haunt me.  Imagine a charlie horse, in your calf, then multiply that from your calves to your ankles, feet, toes, hands, fingers, wrists - aw hell, I had my jaw lock up on one side the other day while talking to Steven on the phone.  Name a muscle in your body and if it can clamp up? My body knows how to do it and has.

I had a whole week without this. A whole week!

Everyone takes for granted going to bed and falling asleep, only to be awakened by an alarm clock, a baby crying, a bump in the night or a rooster, right?  Then there are those of us that lay down and hold perfectly still hoping that if we don't move a single muscle those muscles that inhabit our bodies might not notice and won't spaz [or pop, as I say to Steven.]  I know many, many people suffer from insomnia, as I did too - and lack of sleep can be one of the most debilitating things to a person.  Sleep is as valuable as air, water and food to our health - yet, it isn't insomnia that is keeping me out of bed now.

Tonight, and for the past year, with brief respites, it is because the only way to find relief is to sit or stand upright.  But I am too tired to do any of the things I want to do.  Like laundry [yes, I am the only woman in America that actually wants to do laundry, go figure] or bake or cook.

I still do those things, but it swamps me.  I can't NOT do it. It makes Steven and Evie too happy.  They don't realize how their wonderful reactions hit me deeply. I want this everyday. I want to hear how great it is not to have to do their own laundry or mop the wood floors or drive to shop.

But it ruins me.

Shuts me down and keeps me in my chair.

Two, three days?  I am done.  For a week. Or two.  And then it all piles up. [Laundry metaphor Tadpoles. You're welcome. hee ]

My PCP tries every remedy he has in his arsenal, but to no avail. My former RA doctor simply patted me on the head and said "It has reached your back and with your other conditions, what did you expect?"  Hence why the bitch is my former RA doctor. And yes, this woman, who is young enough to be my daughter PATTED me on the head.  I damn near bit her.  It was the one appointment that Steven couldn't attend. It was also my last with her.

I could take oodles of narcotics to give me relief and quit my own bitchen', but there are a few problems.  There are very few drugs I am willing to take for fear of compromising my heart and liver. The doctors toss this sh*t at me and say things like "Well....[long pause]. . . it will relieve your pain. Don't worry about the death it might cause." I kid you not.  Not those exact words, but they figure I am going to die anyway, why not practice medicine on the sick chick. It drives me nuts. I am waiting on a transplant, yet, she is trying to move me up the transplant list faster? If I hit the top 10 I still may not receive one, especially if I damaged myself by agreeing to her voodoo. It doesn't make sense.

Then there are the things they have prescribed I can take safely and tho' they worked, the side effects ranged from sheet thrashing nightmares ["Why suffer from regular insomnia when we can keep you up for days with one little pill!"] and copious vomiting.  I don't say that lightly.  I know the step count between my chair, the kitchen sink and the bathroom.  I know how long it takes me to get to each.

A few months ago I told Steven "I miss our old powder room [sink and toilet]."  He asked me why and I replied "It's the only place that when I was sitting down to go potty I could rest my chin on the edge of the sink to throw up at the same time."  Yes, he did laugh. But it's true. That was one damn small bathroom. giggle

It's now 5 am  and time for me to push Steven out the door to work. Thank goodness it's Friday of a three day weekend.  I have coffee to perk and kisses goodbye to give.

Gang?  Hang in there - it isn't easy, but it is a helluva' lot of fun if you let it be.  I know this post might not illustrate that, but in my heart there is more to be grateful for than to allow your world to be colored dark because of it.

I try to explain myself, but since none of you is sitting directly across from me listening to my deep voice, tinged in southern drawl, it doesn't make a whole lot of sense.

I am just tired and rambly.  Then again, when aren't I? ::grin::

Smile loudly, life is a gift!  We'll see you on the flipside.

Love and hugs, Janine


life in the mom lane said...

There is no way anyone can comprehend what you're going through. The fact that you can feel grateful on top of everything amazes me, estounds me, humbles me.

My hope for you is relief, however that can be achieved.

Gentle but warm hugs dear friend. Xo

Gypsy said...

I've had weeks where all I could do was sleep night and day, but there was no one else to do anything for so I just slept most of the time. Or napperd - you really don't get good sleep when there is something wrong with you.

I hope you get the transplant you are waiting for, and soon, so you can get on a true road to recovery. I can't imagine what it must be like, waiting and suffering. Hang in there, darlin' - it's about time you have something good happen.

CWMartin said...

Cold comfort here, but kind of reminds me of Scrappy. For example today, he was unwilling to sit down and rest on a hot day until he HAD to sit down and rest. Literally so hot it took four tries for him to get his tongue back in his mouth at one point. But gets pissed at me if I make him sit and rest.

Then comes home and limps for three days.

Juli G said...

I have no words of comfort to say here other than I think I too may be just like Chris's dog Scrappy.

Jean said...

If I had some advice on how to pace yourself, I would give it. A good day is a GOOD DAY!!! Pain is difficult - when we have it - we are miserable but it is impossible to convey to another person. When it is gone, it is difficult to remember just how awful it was - we are so happy to be ourselves that we forget that the pain will return if we tax ourselves - hell, we know it's gonna come back anyway so we want to pack as much as we can in before it does and hope that somehow, maybe, it won't.

I think I was probably awake when you wrote this. However, I don't go online when I can't sleep because it always makes me even more awake.

msj09027 said...


My mom had many health problems due to bad valves in her heart and eventually received a transplant. She suffered from cramps like you. Originally, the Dr.s gave her quinine pills and that worked immediately. But the govt. in their caring wisdom passed a law that only malaria victims could take it in pill form. Hmmmmm, not a recreational drug, IMNSHO. But what did help is tonic water, as it contains quinine. It really does help with the debilitating cramps. Also, Tramadol is a pretty good pain relieved and it does not contain acetaminophen.
Good Luck!