Chronically, Chronically Ill

Being Chronically Ill is more than being sick chronically-- it is facing a whole new chronically Chronically Ill world. It is facing this world and being forced to become a resident at one of the lowest, if not the lowest, times of your life. It is being blind sided and shanghaied when you are so tired and the pain is unending and you do not understand what the hell is going on.

It is pain like you have never known. Where is it coming from, what is causing it? You cannot move without wincing in pain. Aspirin, Tylenol, Ibuprofen -- they are like water, they don't touch a thing. Nothing you do helps. Must be a flu. I'll tough it out. It will go away. It will go away. You don't know this world yet. But you will.

In this new world you will learn a new language. It is learning, or re-learning, how to do research. It is learning how to do research in this new language. It is reading articles online with one page open to a medical dictionary, one page open to webmd to help you understand what you have just read in the medical dictionary, and a word document open so you can cut and paste info to ask one of your many doctors what it truly means and if it has anything to do with you anyway.

It is learning the names and specialties of an ever growing list of new doctors. It is learning what these specialists specialize in and learning why you are so DAMN special that you need to see all of these new specialists.

It is learning the names, the spellings, the pronunciations, and the uses of an ever growing list of new medications. It is learning how to make a chart on a Word document to document all of the medicines you take, how much you take, who prescribed it and when, if you went off of it , why. Or, god forbid, learning how to make an Excel spreadsheet to keep track of all of the doctors, all of the medications, and all of the "conditions" you have now been special enough to have been diagnosed with.

Chronically, Chronically Ill.

And, this is only the foreword...

Ten of the Many Causes of My Depression…

Not necessarily in any particular order:

1. Unrelenting,"Un"-curable, Searing, Aching, Burning pain, Each and Every Day, Day in and Day out…

2. Unyielding, Relentless, Exhausting, Fatigue Day in and Day out Each and Every Day…

3. Uninformed, Un-supportive, Presumptuous, Judgmental, Impudent Medical Professionals...

4. Judgmental, Un-supportive, Deserting, Vanishing Friends…

5. Blood test upon blood test upon blood test, MRI's, x-rays, CAT scans, Nerve Conduction Study (NCS), electromyograms (EMG), Nerve Conduction Velocity tests (NCV), etc., etc., etc... All Tests Normal

6. Insomnia, Restless Leg Syndrome (RLS), Tossing and turning, Edginess, Un-restorative sleep, Up and Down All Night Long, Walking in my Sleep, Eating in my Sleep, Waking when I Fall...

7. Anxiety, Apprehension Uneasiness, Distraught, Tearful, Jumpy, Sensitive to noise, smell, touch, Ready to Jump Out of my Skin...

8. Loneliness, Despondency, Sense of Loss, Detachment, Self-made Seclusion and Isolation...

9. Failure, Useless, Hopeless, Inadequate, Ineffective, Afraid, Afraid of the Future...

10. Unfocused, Forgetful, Muddled, Disarrayed, Disorganized...

Depression rears its ugly head from time to time, most often without any warning. It is a constant battle. Unfortunately an unending one, much like Fibro and CFS.

Graceful Agony is having a Blog Carnival entitled "Who Turned Out the Lights?" examining the topic of Depression. It is very touching and thought provoking and most certainly worth your time.

me,

CJ, in time

Let Me Introduce Myself...

Hello. I am CJ, let me introduce myself. I am an almost 56 year old menopausal (Does it ever end? Is anyone ever post menopausal?) married 27 years (holy smoke!!) homemaker with two children, 25 and 22 years old. I still call myself a homemaker though I haven't really fulfilled this role for four or more years. I call myself a homemaker on those forms that ask "Occupation"? I do this because I can't think of any occupation title that describes what it is I do. This would be because I am not sure exactly what it is I do... anymore.

I hear the phrases, "I am not my disease" "My disease does not define me". This puzzles me. I am thrilled for those that can say this, those that can think of themselves and not think of their disease. I am in awe of their mindset. I have not gotten there yet. I have not even driven by it, much less walked. I am in the coliseum...at the very top...in the nose bleed seats...behind a column.

I am CJ and I have chronic illnesses. These illnesses, Fibromyalgia and Chronic Fatigue to name a couple, shape every portion of my life. I cannot think of me and not think of them. They have taken away so much of me. It truly is like a puzzle. I am the puzzle, a puzzle of many colors, of many small, sometimes oddly shaped, pieces. Fibro and CFS have smashed into the puzzle and have lost so many pieces that I am not sure if I can patch me up.

However, I am trying to put the puzzle back together, just like Ol' Humpty Dumpty's men. I am fairly certain it will not be the same shape it was before, some pieces are gone forever. Perhaps I can fashion some new pieces that can fit with the old. Maybe I can reshape some of these pieces to look somewhat like they did before, shape them well enough to fit in the puzzle.

If I am able to gather all of the pieces of me, how do I go about putting me back into some semblance of what I once was? My blog, CJ In Time has been surprisingly helpful in that effort. I am not sure what I expected when I started it, but it has become a lifeline for me. It began when I found "I Really do Miss Myself"(now Seeking Equilibrium). I could sure relate to that title. And, I found I could relate to Rose. And, Rose not only commented on my posts, she introduced me to other bloggers. I then found "Graceful Agony". This title I could not relate to...but boy did it intrigue me. How could anyone make agony graceful? Jolene has. And she has lifted me up, too, just like Rose, and Miss Dogkisses, and Lynn-Marie.

I have a long way to go, putting CJ together. Because of this chronic illness community of bloggers I am feeling hopeful again. One might think such a serious topic with such serious issues would be a total downer. But, we "get" each other. Even in our posts that whine, we get a lift. Someone always responds "I know what you mean" and, immediately we are not alone.

Hi, I'm CJ and I have chronic illnesses. But, I'm not whipped yet.

Living with Someone Who Has Fibromyalgia

Living with someone who has Fibromyalgia: a fate worse than Fibro?

1. Is it okay to still participate in activities and sports that you used to do together?
2. Can you accept invitations to get-togethers and activities that were for just the two of you, for ones that are for the whole family?
3. Can you still have your standing Saturday morning golf game, followed by lunch with the guys?
4. Is it okay to be upset that the house looks like hell and you haven't had a decent meal in, you can't remember when?
5. Is it alright to be mad when you work outside all day Saturday doing all the yard work and you come inside and find your chronically ill spouse laying on the couch watching TV--AGAIN?
6. Can you ever think or feel anything, ever again, without feeling guilty?

Well of course the answer to all of these is ---well, we all know what we want the answer to be. And, believe it or not your chronically ill spouse would agree with you---she wants to agree with you. She wants you to do to all the things you used to do, all the things you want to do. But, she wants to do them, too!

So there is a tug of envy and jealousy. There is some button pushing. There is some martyrdom. There is some lip quivering. But, honestly and truly she wants you to go, she understands why you're mad. All of that stuff is because she is mad at her disease. She is tired of always hurting and being tired. She is sad that she can't come with you. She is sad that you can never share many of those things ever again. She is sad that she can't even do the simplest things--like clean the house, fix dinner, pull weeds.

So, you both need to keep talking. But, even more important than that, you both need to LISTEN. Listen to each other when you are talking, really listen. Try and put yourself in the other person's shoes. This is no picnic for anybody. It is excruciating -- for everyone.

Life never will be the same. But it doesn't need to be a death sentence. It doesn't need to be the end of everything your life used to be. Through the pain and through the fatigue, and through the confusion and the questions a new life can be formed, and adjusted, and re-sized. There will be tweaking along the way, new information and new symptoms and new feelings means the conversation needs to be ongoing.

There needs to be talking. There needs to be listening. There needs to be an everlasting discussion.

Variable Prevailing Visibility

Variable Prevailing Visibility: a condition in which the prevailing (current) visibility fluctuates rapidly while the observation is being made.

So maybe Fibro has variable visibility? We have “fibro fog”, so why not go with the weather analogy? After all, that damn weather – humidity and the barometric pressure – rules our lives. Check the forecast; you will know whether the next few days are going to be excruciatingly painful or agonizingly painful or maybe just horribly painful or unpleasantly painful or perhaps merely painful.

Variable visibility: "You don't look sick." "You sound like you are doing better." "You look good today." Thank you. We are glad we do not look like we should be wearing sackcloth and ashes. We are glad we don't look like death warmed over. That's good, thank you.

But could you observe for a moment? Could you see the pain and apprehension in our eyes as we slowly sit down? Could you see us wince as we squirm in the chair to try and get comfortable? Could you hear and see the sigh, the slump of our shoulders, and the sigh of relief, as we finally do get off of our feet?

Visibility: So, could it possibly be: "You don't look sick. I don't know how you do it when you feel so bad." "You sound like you are doing better. I hope that means you have found something to help with your pain." "You look good today. I hope that means you are having a good day."

If you could work with us a little, maybe we could be visible all of the time. Maybe you could understand that this is it. This is us. This is the way it is going to be. We have fibro/CFS/ or any one of the many other chronic diseases that suck the life right out of us.

Here we are. We don't like it, but we are trying to manage as best we can. Can you please see us? The person you have known is still in here--I hope--somewhere in here underneath the pain and fatigue. Please see us and accept us as we are now. Maybe if you do maybe, just maybe, we can accept us, too. Maybe, just maybe we can find ourselves again. Even with the pain and fatigue.

Later,

me
CJ, in time -- maybe, just maybe...

I Need a Hug

Soooo, I went to the neurologist (yeah, I thought it was last week, too, but I pulled a CJ and showed up one week early). Anyway, you know what its like for us, those of us with Fibro, Chronic Fatigue, heck, most any chronic illness. We HURT. I MEAN HURT! Beyond comprehension HURT! And, we are TIRED, BEYOND TIRED, THERE NEEDS TO BE ANOTHER NAME FOR WHAT WE ARE TIRED!

Soooo, this neurologist, who has been practicing for what has to be over 30 years. This college educated man. This specialist. This man who I have come to for help. Help with the peripheral neuropathy that burns and sears and makes it impossible for me to stand for more than five minutes without almost collapsing in pain. This man says:

"You need to exercise."

Really. I need a hug.

Later,
me
CJ

BTW, sorry I yelled. I am preaching to the choir.