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Chronic Fatigue, Pain and Painsomnia

If I start to sound whiney in this post I apologize in advance. So many posts I read from others who suffer from these same debilitating conditions do sound whiney to me even though I understand their plight. I mean I am living it for god's sake and yet at times I want to say "Get a grip!"

I am sure that people have wanted to tell me to "Cowgirl up!" at times and, in fact, they have often said things that were much less kind than that. There are people who have no clue what battle we face just to get out of bed some days and yet they feel that they have the right to judge us. Well, they don't. No one does. I don't even have the right to feel like some who write about their illnesses sound whiney so I know that none of us are perfect but the ones who are really nasty need to reel it in and think about what it is like to walk in our shoes. A little empathy never hurt anyone and I doubt that it ever will.

I have chronic pain. I have had chronic pain at least since I was 14 years old and in a car wreck that mess up my back. My parents made sure I had the best medical care that they could get for me back in 1972. My mother who worked nights missed many hours of sleep making sure that I had treatment opportunities. Some injuries just never
heal completely. You just live with it and go on. I have had myriad other incidents that have injured me over the years. I seem to be an accident waiting to happen. Some of the incidents have an interesting story and others are so unreal that I can't believe that they caused me to be in acute pain to the degree that they did. They still befuddle me.

Aging, accidents and arthritis have had their way with me. For the most part I have gotten to where I can life almost peacefully with some of my chronic pain but then something happens to flare it up. Then all bets are off.

This leads to a lack of sleep from either not being able to go to sleep or not being able to stay asleep because the pain awakens you. I often talk about "my good friend pain" waking me up. Pain has to be my "good friend" because it lives with me all of the time and I would hate to see what pain would be like were it my "enemy." So my "good friend pain" and I wander around the house together reading, watching a few minutes of television, playing some mindless games on the computer and then we try to go to bed again where we do the "toss and turn" Tango until we either go back to sleep or get up and start all over again.

This "song and dance" with pain is called Painsomnia. Now I have had good old fashioned insomnia most of my life. When I was younger it wasn't as much of a problem because I had lots of extra energy. That is no longer the case. There is some secret vortex that sucks up all of my energy and spews it into the stratosphere for other things to feast on and delight in while I feel like a turtle who has been on a three day drunk from drinking some really cheap whiskey. Now that is really a slowed down and dragged out feeling. It is most yucky.

It is techinally called chronic fatigue. Everything is overwhelming. You are tired...beyond tired actually. Brain fog overwhems you, your skin is hypersensitive, your eyes feel like they are about to crack like glass from being so
tired and dry. That is just a start of what chronic fatigue feels like. It is something that grows bigger and bigger
kind of like kudzu does in the wild. The more sleep deprivation you have due to pain the deeper your chronic fatigue
abyss grows until you realize you are completely lost and consumed by the fatigue and do not know which end is up. It is a living hell.

Lately the chronic pain I have lived with for years has been followed by a new variation that seems to intircately combine two conditions that affect one's nervous system. Let me just say that nerve pain is a whole different animal than other kinds of pains. The commercials that talk about nerve pain don't even show the half of it. Even though I do not have shingles I can understand why they are so horridly painful for some and I hope to be able to afford the vaccine before I find out for myself.

There are other kinds of pain I have not experienced besides back, joint, muscle and nerve pain. I know this. It is my hope that I never do because the swamp of painsomnia, pain and chronic fatigue threaten me daily with being buried alive by them.

I do not just sit around and wait for my pain to simmer down. I may sit for a minute to rest but I take care of my house, cook, clean, do laundry, care for my little dog and spend time trying to do what I can. I have help with some things like taking out the trash, grocery shopping and such but for the most part I care for myself and my dog alone. I try to push myself to do more every day. I am not going to just sit back and wait for life to pass me by if I can keep from it.

Sometimes the chronic fatigue slows me down to the point that I cannot do everything I need or want to do. At those times I respect that my body needs rest and I let it have it. I only have one body and if I abuse it the way I once did in the past I won't be able to keep doing the things that I can now. It is a win/win situaiton really so I will rest when needed and work as I can. It is all a matter of balance.

In the meantime, however, if anyone invents a way to better manage chronic pain, and I have tried just about everything available that I can afford, please let me know because I sure would like to try some new things that I have never been able to do, I would like to be able to ride a bicycle again and I have never given up my dream to go to Machu Picchu.

Those of us who live with chronic fatigue, chronic pain and painsomnia can find means to cope in our own ways but it is not easy. It is one step at a time as we work through the torture that surrounds us to reclaim our bodies and live the lives we were meant to live to the best of our ability. You see, we all do the best we can, where we are and with what we have. This is our life, please don't judge us. Help us to celebrate our victories no matter how small and support us along the way. We have value. We try not to forget that. we need you to follow our example.

Ciao babes!


White Trash Foot

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