In the Middle of the Night - Once Again
Living with a chronic illness can be a vicious combination of pain, insomnia, and depression.
Here I am. It is the middle of the night. I sit here, in the dark corner of the bedroom with just the light of the computer screen to illuminate the keyboard. But, I don’t need lights. I have learned to write without having to see the keyboard. I’ve had plenty of practice. In fact, I’ve had more than 16 years of practice. I’ve been practicing with my old friend, Mr. Fibromyalgia.
Here we sit, Fibromyalgia Syndrome and I, or FMS for short. The wife is in the bed not to far from where my weary body is trying to hack out words to express what I feel.
You would think that after more than 16 years of living with this dreadful and persistent disease, I would be used to this. You would think that the pain, the never-ending fatigue, and the sleep disturbance would all be old familiar friends by now. They are NOT friends. They ARE enemies.
Long ago, when I had to surrender my ability to work to this enemy, I thought it was then that I had accepted my illness. In a sense I did. I was able, by the grace of God, and some very good lawyers, to convince the disability board that having an illness, one for which there is no cure, one that forces you to have to sleep nonstop (sometimes) would not be compatible with working a 9-5 job. The board agreed. It was then that I began executing the official duties of a full-time disabled person.
Oh, boy!
But, even though I have been disabled and have had to learn to cope with all that is suppose to mean, I am so fed up with not being able to sleep. I haven’t slept through the night in so long, I can’t remember when I did. I think sleeping is the key to all of this. I could be wrong.
The way I understand it, sleep is supposed to be the answer to replenishing your body’s ability to deal with muscle repair among other things. When you stress your body with exercise or even the normal activities of the day, small micro-tears creep up in the muscle. Sleep fixes this.
This is the cycle: The pain prevents sleep. The sleeplessness produces more pain. This creates fatigue. The Alpha-Delta Sleep Interruption doesn’t allow your body to repair, this produces more pain, and you are in a constant stage of fatigue, pain, and depression from it all.
Last night, after a movie and dinner, I almost fell to the ground trying to get down some stairs in one of Guanajuato, Mexico’s tunnels. I stumbled. I wasn’t hurt. A normal person would have gotten a good laugh at his lack of coordination and forgotten about it.
My body wouldn’t let me forget. No, sir.
Exercise, carrying something heavier than you’re used to, a fall in a ill-lit tunnel, can cause tiny, sometimes unnoticeable tears in your muscle. Usually, when you sleep, you body releases amounts of hormones that repair those micro-tears. In the body of someone with FMS, this does not happen.
Sleep disturbance is one of the features of this disease. We have what some experts call the “Alpha-Delta Sleep Interruption”. This is where someone with FMS falls asleep, and we go from the Alpha stage, or stage one, to the Delta stage, or stage four, something jerks us out of the much needed stage four sleep and back into one of the other sleep stages.
If you’ve ever had surgery where they slip you something that just barely knocks you out and you can hear and sense some things going on in the operating room, this is what it feels like to be caught in this hideous state where you can’t quite fall asleep. I cannot begin to convey to you the utter frustration I go through when I can’t sleep.
Sometimes I wake from this trance and sometimes I don’t. I just lay there knowing I can’t sleep but in a sleep limbo.
People with FMS usually can fall asleep easily enough. That is how I am. I can fall asleep but when in an FMS flare-up, caused by a near fall to the ground, I usually wake up 3-4 hours later. I am wide-awake and have to get up. To lay there would cause my never-ending pain to get worse.
If this sounds like a confusing nightmare, you have no idea. When I fell last night, I knew that the fall I took would come back like a delayed fuse. And it did. It hit me a few hours later and roused me out of sleep. I had to get up and hunt for the pain pills.
This is the cycle: The pain prevents sleep. The sleeplessness produces more pain. This creates fatigue. The Alpha-Delta Sleep Interruption doesn’t allow your body to repair, this produces more pain, and you are in a constant stage of fatigue, pain, and depression from it all. Sometimes you can hit a remission plateau of sorts, where you are feeling pretty good and then something happens. You “over do it”, like a near fall-on-your-face mishap, and it starts the cycle all over again.
It never ends…
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About the Author:
Doug Bower is a freelance writer and book author. His most recent writing credits include The Atlanta Journal-Constitution, The Houston Chronicle, The Philadelphia Inquirer, Associated Content, Transitions Abroad, International Living, Escape Artist, and The Front Porch Syndicate. He is founder of Mexican Living Print & eBooks.
Article Source: Ezinearticles





















I think so many of us can relate to this article. The only difference in my problem is that I have trouble going to sleep also, especially if I have overdone it that day. That in itself is weird because normal people usually go to sleep faster if they exert themselves all day. It is a vicious cycle. No sleep, pain, no sleep, pain…..where does it end? And I have tried so many different sleep meds and natural remedies and none of them work, even if I do go to sleep I never rest. I always wake up feeling worse than I did before I went to sleep.
WOW This poor man hit the nail on the head for how we feel in the dark of night. I have suffered so long with the lack of sleep at night and FINALLY the Dr. realized what I have. Started me on LYRICA. My best to the author of the article.
Sleeping Better now,
Sandi
This is an interesting story, with some interesting points, but Mr. Fibromyalgia affects everyone differently. I for one cannot sleep without a combo of clonazepam, soma, and a natural supplement called ‘Power to Sleep PM’ by Irwin Naturals. I have to take them all at the same time or they won’t work. My pain med now causes a rebound affect and although it dulls the pain it no longer works for sleep. In fact, just the opposite, it acts as a stimulant. What do I take? you ask….Codiene w/tylenol. I am allergic to so many medications that it is a thin wire I walk.
I pace myself but being a night owl is boring as I can not take care of normal business activities that day people take for granted. If, for instance, my 4 year old grandson spends the night, even if we are low key, I am exhausted for two days and I hurt more. Just the mental stress of taking care of another life for 12 - 24 hours is overwhelming. I want to go back to work but I am not sustainable. I am high risk. That does not go over well in the work force. Employers want folks who are dependable. I no longer am. I am hireable but not sustainable……
Couple Fibro with a stroke and life takes on a whole new perspective. I must just take it moment by moment, literally. When I hurt, I must exercise, mildly. When I am tired, I must rest even if I cannot sleep. Without a minimum of 12 hours of sleep with the above mentioned sleep cocktail I am useless. My mind refuses to wake up completely. If I don’t take the medication I will stay up for up to 36 hours, then sleep for 4 hours maximum. There is no middle ground for those of us with this dreaded disease.
Before the stroke and the triggering of the extreme fibro I was a type A personality. Not because I wanted to be but because I had been conditioned by my upbringing to strive, strive, strive, to do better, be the best, try harder. That is not who I was. By Gods design I am laid back and mellow.
I guess maybe, this was and is Gods way of making me slow down. I could attribute the whole thing to satan but I won’t give him that much credit. God allowed this and God will heal me in His time, if He so chooses.
God bless all who suffer from this and other chronic conditions. Suffering has its own rewards. I do not know what that means, just that I was supposed to say it. I am learning to go with my intuition, rather than the solidity of this world. Be more spiritually oriented. Trust in God, Jesus, and The Holy Spirit. Learning to live above the natural, and into the supernatural. Develop my creative side, which was and has been stifled for most of my life. I know I am creative, I was never encouraged to develop that facet of my self. Now I have no other choice.
Thank you for allowing me to post.
Susanne aka unchained
Wow! here i am awake right now and reading this! made me think of the sleep study i had done. I had to go for a total of three visits. yea, try to sleep with all those wires attached to you, laying flat on your back, with one pillow, on an uncomfortable bed, in a strange place, with someone coming in and out of the room, while they are watching you from a monitor! yea so relaxing!!! anyway, on the last visit the doctor had to give me a sleeping pill as none of the tests were getting anywhere, on that last night, she came in to take off the wires and you know what she told me??? you DEFINITELY have fibromyalgia! Even with a sleeping pill your brain doesn’t completely fall asleep. I don’t know how you do it, she says. well we “live with it”.
So if any of you think you are crazy, your not. You actually can’t sleep, even when you think your sleeping you aren’t. So all the sleeping changes advice we get on how we can sleep better, it doesn’t work. We need a cure for our disease! yes, it is a disease! not a syndrome! you can get over a syndrome, you can’t get over a disease. We just need a cure!