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...

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.

significant others

I know you love me. I know you would do just about anything to make me better. I feel guilty as hell about becoming the person I have become. I hate living it. And, I am so sorry you have been dragged into my hell as well.

There is no way I enjoy living this way every day, day in and day out, night in and night out. I hate feeling like crap everyday, all day. I can't even stand to live with myself. How do you stand to live with me? I hate saying how much I hurt. I hate saying how tired I am. I don't like listening to it, you must be going mad having to listen to it, too.

But, what is there to do? I can't lie and say I am fine. Well, I can and I do, but it hurts even more to not be able to say how I truly feel. I hate it, but the disease is who I am right now.

I know it shouldn't be that way. I know there are chronically ill people out there screaming at their computer screen: "The disease does NOT define us!" I apologize. I truly, sincerely do. But it is the way I feel right now. I have been in denial for so long--this will go away--this is not happening--this did not happen to me--this simply can Not be.

But, yes it is happening. It has happened. It is. And so I must figure this out.

To Do List:

1) Redefine self.

2)

I am struggling to do number one. Does anyone have any pointers on how to redefine self? So many of you have done it, can you give me some ideas? I have lost touch with CJ. I have the added dilemma of becoming an empty nester. My life has centered around my family and my volunteer work. My kids are all but gone (my son will be graduating from college soon) and I cannot do any of the volunteer work I was doing. Right now my husband and I are living apart since we are in the middle of relocating. I am struggling. Who am I?

Did you know that chronic illness truly inhales profusely?

me,

CJ, whoever she is

If I'd known I was going to live this long.....

You know the old joke: "If I'd known I was going to live this long I would have taken better care of myself."

Truly, what a horrible thought. After the kids came along I never did take very good care of myself. I never took time for myself. I gave up regular exercise. We ate meals on the run from one activity to another--if I ate at all. Well, of course I ate. Late at night, when I was up not sleeping. And, of course I ate the most nutritious stuff! I remember vividly one spring night I had been up all night with a sick baby--chronic ear infections--and I "needed" something. And, what I needed was a Reese's chocolate peanut butter cup! So I went riffling thru my daughters Easter basket in search of an egg shaped chocolate Reese's peanut butter cup!

I should have taken charge then. What kind of reasonable adult steals from her child's Easter basket in the middle of the night??? I should have recognized I had a problem then. I could not handle stress. I was overwhelmed and depressed, but I could not admit that. I was Super Mom. I could handle it. I could manage everything and anything and everyone else's everything and anything. The load on my back just got heavier and heavier as the years went on.

I was on a very young spindly seedling of a tree with that heavy load. And now and again a branch would snap. I would snap. And I would make a grab for another fragile, spindly branch. I usually caught it and stuffed "whatever" into my ever increasing load. Stuff it. Stuff it. Stuff it. I never dealt with these things I stuffed. I was supposed to handle it myself. I learned that early on. I was the baby. My older siblings had "issues" and I didn't want to add to my parents already over full plate. So I took care of myself and stuffed. I stuffed all the pain, all the loneliness,all the unmerciful teasing I received at school , all of the incredible sadness I felt. It all went into that load and on to that tree. That poor Charlie Brown Christmas tree tree.

And then the dam broke and the tree was bent over, in peril of washing away. The load broke open. It all poured out in sickness --- physical ills, mental ills - paranoia and depression and anxiety and "acting out". I became someone I didn't know, behaving in ways I could not imagine. I was saved from total self destruction, but my load was still more than I could handle. I wouldn't, couldn't ask for help. I wouldn't, couldn't talk with anyone about my load. I again reached out for a spindly, wet branch. And I stuffed.

And here I am, thirty years later, stuffing. And I wonder sometimes, if I didn't set myself up for this life I have now? I would like to change things. I would like to be different. I would like to make things right. But, I know its too late for some of the truly important things. Damn it. I really blew it on some things. I really blew it with some very, very important people.

I feel like I am trapped under that load now. Everything shifted and it has all come down on me. I feel trapped under all of that stuff and trapped inside this very sick, very messed up, body.

I don't know if I can ever make it right now.

Later,

me

CJ

So who is CJ?

Well, I wish I knew. Do any of us know who we are after getting this diagnosis? Everything I ever knew about myself went out the window. I "am" what I do -- and now I don't DO anything. So, who the heck am I?

I was a wife -- I am still married, but I am not a wife. No, not really anymore. And that is a pain that goes so deep and hurts so, so very much. I was a mother -- well, that one is a crap shoot because I am going thru the empty nest syndrome. But, if they were here and younger I sure the heck would not be the mother that I was. The over involved mother, but in a good way!! Honestly, the girl scout and boy scout leader, the home room mother, the PTA volunteer (who never said "No" to anything), the Sunday school teacher, the VBS coordinator, the auction chairperson, the Children's Council chairperson, the Special Education representative, the founder of the parent support group for Special Educ., the Odyssey of the Mind coach(3 out of 5 years taking them to "Worlds"), the PG Food Unchair(I refused to take on another chairperson title, I was just going to help--HA!)--in other words "Super Mom". A title I relished and felt privileged and so very lucky (since I did not have to work outside the home) to have.

I knew that job of super mom would pretty much end when the kids finished college. But, I had made plans for that. I wanted to teach Sunday school again-- how I loved those second graders. I wanted to continue my work with Special Education. I wanted to more with the gifted children group. I wanted to get a part time job -- doing what, I wasn't sure, but I was going to find something! I wanted to travel with my husband. I wanted to do scrapbooking of some 25 odd years of pictures.

"Life is what happens when you are making other plans." John Lennon

Yeah, life is what happened...

More -- later,
me
CJ