transparent spacer transparent spacer Imagine waking in the morning. Imagine waking and being afraid to move. Being afraid to move, yet knowing that soon you must. Being afraid to move even a single muscle, for you know the consequences. Afraid of what is coming next, yet you cringe and move anyway. And imagine that this happens every day without fail. And you don't know yet whether it will be a good day, or a bad one.

Imagine waking to find that you are laying flat upon your back.... or finding yourself flat upon your belly. Imagine that you are barely aware of your legs. Just a touch of awareness...just enough to convince you that your limbs are still there. Imagine too, that a band across your lower back always feels stiff and sore. And then you try to move and you realize that you are stuck in that position. You realize that you cannot move anything below your waist, no matter how hard it is you concentrate. Had you the choice, you would not move, but your back has begun to twitch, so you have to. Imagine as well, that you must ask your companion to push or pull you onto your side. You are rolled onto your side, all the while gritting your teeth. You sometimes scream!! Finally you are on your side, and feeling fairly quickly returns.

And imagine that it feels like someone has put sand into your spine, and into your pelvis, and as the bones slowly move, you feel a burning, grinding pain radiate down your legs to your toes, especially your left...and you can literally feel where every nerve is located.

Or imagine that you stayed out of the danger positions while you slept. Most nights you don't get stuck, so you carefully begin to rise for the day. Your head is already hurting, and you wonder whether it's a new headache every time you open your eyes? ...or just one, long, nonstop headache? It doesn't matter really... It's usually just a dull-roar throb in the background, achey and annoying and constant.

But your nerves are already"zinging". You call it zinging because, if you listened close enough you would almost believe that you can actually hear the sound of synapses firing. And you call it zinging because it feels like the nerves are short-circuiting...; like they feel when your foot "goes to sleep" and it starts to "wakeup" and is getting its feeling back. Right now, it's an annoying twitchy feeling. But, it builds. It builds every day; until it goes beyond comfortable. It builds until you twitch all over and your nerves feel like they are on fire. And you pray for it to stop. But no-one seems to hear your prayer.

Imagine waking to discover that your left arm, positioned in a way that was previously quite comfortable, burns as if a fire were coursing through it. Or imagine that you are sitting in a chair, upright in as good a posture as you can muster, and your arm throbs; and the muscles feel like someone has been punching them...but nobody has.. You can barely move your arm, but you move it nonetheless. It feels as if every muscle has begun to tighten. And you try to relax it, but it won't relax. And you go about your day, muscles taut, nerves zinging, and unable to relax. You tilt your head to one side, and the throbbing lessens a little. It doesn't go away, though. You imagine that, maybe, if you could tilt your head far enough, the throbbing might end. But you can't, and so it never does.

Now, imagine sitting, holding your morning cup of coffee...with both hands sometimes, because you shake so much. You shake and twitch. You reach out for your cup, expecting to grasp the handle. Usually, you do alright, and you lift your cup to take a sip. But, you don't know at times, whether you will sip your coffee...or wear it. You shake a little nearly all the time, though when you do something active, it lessens the twitches...for now. It builds and grows throughout the day however. You keep busy. You do little things and bigger things, just to keep from being still. Stillness isn't your friend anymore. It's not even possible anymore, for when you relax into the stillness, the twitching and shaking worsens. And it builds...and it builds...all day.

And finally, you just can't take it anymore. You feel as if every nerve is charged, and every muscle is taut, and you are so tired from the twitching. So, finally you take some painkillers. And most of the time, you don't want to take anything for it. You don't want to, because the only pain medications strong enough to put a dent in the pain, are too strong. You don't want to, because muscle relaxers don't seem to work at all, and only make you "loopy." So, you steel yourself and bear it. It wears at you. On, and on, and on... Somehow, you hang in ...

You gave up on aspirin, and acetaminophen (Tylenol), and ibuprofen a long time ago. They just weren't strong enough, and the amounts you had to take were causing other problems. Your doctors have prescribed Vicodin. It is only partially effective, but at least it does something to ease the pain. But, finally your doctors realize that you are also getting toxic levels of acetominophen so they prescribe Oxycontin, which doesn't have the tylenol in it. And it helps a bit. It seems to be the only thing that lessens both the pain and the twitches. But, you are having to take it every single day without fail.

Every day because, if you don't, you wake late at night shaking steadily, if not outright violently... and it takes an hour to an hour-and-a-half for the medication to take effect. Nor can you take very much of it, either. At least, not if you want to function with any clarity of mind.

Imagine that you already have had problems with concentration and you know that the medication just makes it worse. And you can not take it too often...because your physician doesn't want you to get addicted to the painkillers. So, although your prescription says you can take three tablets a day, you limit yourself to one...or two on really bad days. You hang in and put up with the pain all day long. And your physician thinks that, because you don't take the full prescription, the pain must not be all that bad. You hang in and go about your day. You hope the doctors will someday listen to you! You hope the doctors will someday listen to you!

Imagine that your day is different now. Far different from what it was three years past, when this all began. Back then, you were a runner. You liked to get out on the roads and run for mile after mile. But you don't run anymore. You can't. You woke up one morning unable to feel your legs, and when the feeling returned, you realized that you can barely walk anymore. You can barely shuffle around because it hurts so much. And because your legs don't really seem to respond quite right. Around your house, you lean on the walls, and bookshelves. Outside, you must lean on one, or usually two, crutches...and every step is agony. And if you must go any distance, you have to sit in a wheelchair, because you have neither the strength, nor the tolerance for pain, to remain standing for long.

Imagine, now, that your lifestyle has changed dramatically. That you can no longer count yourself among the working professionals. That went by the wayside more than a year and a half ago. You had a well-paying position requiring sharp, aware concentration. But, you cannot concentrate anymore. Sitting in front of a computer screen for long periods of time isn't possible anymore. Keeping focused on your codes and graphics is difficult on good days, and impossible on bad ones.

Imagine, too, that you have times of deep despair. You despair of every knowing what life is like without pain. And you despair of ever being able to work a steady job again. You despair because some physicians say this is permanent, and another says that you will get somewhat better, but how much remains to be seen. And you despair because all the doctors want to do is send you to physical therapists. But you have been to them five different eight-week sessions, and it never works...but the doctors prescribe it anyway. You despair because neurologists keep telling you that you are crazy; that it's "all in your head." Yet, psychiatrists, saying that it is not "in your head" had you referred to the neurologists in the first place. Too, you despair because you are told you have multiple sclerosis; ... or is it Lyme disease? On top of a spine that seems to want to deteriorate. ...And either way, your health insuror doesn't want to pay for any treatments.

And imagine that you despair because you feel so ill so much of the time. You seem never able to build up any strength and wear out very quickly. And you have no appetite, so you eat sporadically at best. Often you eat only because you must in order to survive and, perhaps, get well. You eat to keep your strength up, but after a few bites it begins to gag you, so you have to stop. And you keep trying, since if you don't, your medications will eat at your stomach... and they are part of the reason you can't eat anyway.

Finally, imagine that you are so sick and tired of constantly running up against these brick walls. You are so tired of physicians who care more about getting insurance company blood-money, than they do about your health. And you are so tired of paying out of your own pocket for treatments, and specialist visits, and emergencies, because your health insuror, US HELLCARE, refuses to.

Now, try to imagine that you are Laura . You don't have to imagine any longer. It's not your imagination, but your daily REALITY. You wish it were a nightmare, so you could wake up from it. But it's not... It is the REALITY that you wake up to every day now.

You are so tired of feeling that no-one gives a damn.

I am Laura, and I don't have to IMAGINE... I LIVE it... If I seem, to you, a little ragged around the edges...Forgive Me... After all, it is difficult to remain civil all the time when the only thing you can truly count on is PAIN!!

Laura Stephanie deGrey
klila bat sarah v'bat avraham

I wrote that on January 28, 1999. Ahhhh.....but, the saga continues...

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The Wheel In The Sky Keeps On Turning
© 2000 Laura S. deGrey. All Rights, Privileges and Responsibilities retained.
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