my outlook...

Yes, this really is my blog. I have been gone, suffering thru many, many new tests and many, many new diagnoses. The change in my blog reflects my "being" presently. Out of sorts, maybe, and all over the place.

A little dark and cloudy. But, with remembrances of my beloved desert home, which I shall be leaving by the years end. A sky filled with lightning, with upheaval, with some foreboding of what may come.

I hurt constantly now. I am so tired, so very, very tired. Life has gotten to be almost more than I can bear at times. But, I reach for my happy face to put on when its needed and just curl up and hide otherwise. My emotions are all over the place. I might look and sound perfectly fine one moment and in tears the next.

But you all know this place. It is a world that we all reside in at times. It just seems to be taking over more and more of late...

Depression or Reality check?

"I will never let go of

the fight to get well.

I will never let go

of hope that there will

one day be a cure.

I will never let go

of my "survivor" personality.

I will never calmly sit by

and give in to my pain.

I will never let go.

Period."

These words come from Rose. Rose, who always touches me with her words. Rose, who always checks in with me to see how I am doing--even in the middle of a family crisis. If you do not already read Rose, you really must. She gets it. She gets all of it, and she is still fighting.

I truly wish I could say, "Yes me too!", Rose.

But, I can -- not. I am feeling beat down. I have never thought of myself as a "survivor". I have never thought of myself as being strong--except when it comes to fighting for my kids. Do not cross me there.

I am feeling defeated. I have pretty much lost hope. I am holding on to what little hope I have by a thin, thin, worn and weary slip of thread.

I do not like feeling this way, but ... it is what it is.

It has been this way for a while. I don't think it’s my depression. It doesn't feel the same way. It feels like I have just come to face reality. This is my life. I am in constant pain. Pain that adds new body parts daily. A mere tap on the shoulder and I grab for my arm, wincing and trying to rub away the pain. And, the look from the person who just touched me. Puzzlement. Shock and surprise. And, then ... "You have GOT to be kidding!"

I am so tired, just so very, very, tired.

me,

CJ

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

Thank you -- it's all I've got

I want to thank all of you who have commented on my blog of late. And, thank you to those signing up to follow my blog for that very special gift.

I have been, and I still am, in a very hard place. Your words have comforted me more than you could know. Its funny, I really don't find it difficult to open up here in this place of absolute wide open public exposure. I find that rather astounding, don't you?

Well, you shouldn't. It is because of you that I feel safe and protected and un-judged. Yes, I know there is no such word (well, in most dictionaries), but there certainly is the feeling. I know that no matter what I say, you will not judge me. I am simply saying how I feel and what I am thinking. Unvarnished, unadulterated, bold faced truth. My truth, anyway, at a given point in time. And, I thank you so much for allowing me that. Somehow it lifts some of the weight of the unending pain and exhaustion.

Your comments don't make the pain go away. They don't refresh the unyielding fatigue. But, they sure do fill me up. They fill me with up with a warmth of support and understanding. They make me smile, they touch my heart. They do revive me to fight thru another minute, hour, day.

So, thank you. Thank you 100 times over for taking the time to leave a little bit of you with me -- to help me persevere, to keep me company, if only for a moment, and to help me lean back from that slippery, dark, deep hole.

Thank you.
me,
CJ

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

I could do without it...

I have been feeling kicked around by the universe.

I have experienced, as we all have, the many health "care" people who acknowledge Fibro as though they have a very bad taste in their mouth. Some simply spit it out, as there is no such thing. Some wince at the taste, okay there is some research and some fellow health "care" professionals believe there is something to this syndrome, but it still tastes bitter and makes them gag. Others do the tongue click thing--yeah, yeah you have it, but there is nothing I can do about it. Shuffle, shuffle, scoot, scoot -- me, out the door.

And now I am feeling a pull within the Fibro community. Am I taking an “easy” way out? (Like there is anything “easy” about Fibro!)

I have been feeling a struggle of whether to continue with my choice to use a traditional medicine approach to treat these symptoms of Fibro versus the notion and proposal by some of using a natural means thru yoga, meditation, acupuncture, vitamin and other supplements, getting off all narcotics, and something called “an adrenal fatigue supplement”. I have two people who are telling me they swear by the latter. However, as you probably know, health insurance does not cover any of these non-traditional means. I had a fabulous doctor, a physiatrist, two or so years back that helped me in many ways. However, it came to the point where he said that the only thing else he could do for me was thru non-traditional medicine. And, it was not inexpensive. As a matter of fact it was expensive. My husbands company was shaky at that time and we had two kids in college. You know what I chose.

Well, the financial situation is still not the best, with paying a mortgage on our home and the rent on an apartment for him, plus one kid still in college and me unable to work. So, what to do? Thankfully I have a PC who really is wonderful and supportive. At this time I can NOT imagine managing without the pain medications I take. Period. No question. I have been miserable the last two weeks with them, the thought of giving them up is scary and unbearable to imagine.

Does this make me an addict? Does this make me someone who is “wallowing” in their misery, in their disease? Does this make me lazy? Does this make me a wallowing, lazy, addict?

Today I don’t know. My neck and shoulders hurt so bad I can hardly stand it. The pain in my head feels like hot embers being seared in. I haven’t been writing on my blog because of the pain. And, I miss “venting” and having responses that say “I know what you mean.” “I am sorry you hurt.”

Right now I wish I could take something else for this pain. But, there is nothing left. I will go sit with the ice packs followed by the heating pad (in 95 degree weather!) and pray for some relief.

Does this make me an addict?

I truly don’t know. The emotional pain is unbearable. The physical pain is unbearable. I am watching the clock to see when I can take more drugs. Kinda sounds like an addict to me. Only I guess they wouldn’t watch the clock---they’d just take more…now.

Is that what separates me from the addicts?

What a s---- way to live.

Later,

me

CJ

Can I just be done now?

So, how full of myself did I sound in that last blog? I really was not trying to brag, boast, whatever. This whole blog thing is a journal of sorts for me-which I assume it is for many of you. I am really floundering in this new life. I am clinically depressed, I know that since I am being treated for it. And, I am in that place where I can't see myself ever doing anything but very minimal self/home maintenance. I can do the laundry, pick up around the house (but can no longer clean it myself), I can go to the grocery, do some cooking--but don't often. I cannot see myself being productive at all, can't see myself contributing or making a difference. So, I listed all the things I could remember I did, hoping I could say "See, you can do it, you did it". But all that did is say "Yeah, you did all that stuff then...but you can't do squat now." Useless, taking up space. For what? For my kids. I don't want to mess them up any more than I may have already. My husband? He would be ever so much better without me. I guess you aren't supposed to talk about stuff like this out in the "web". I don't know. Its how I'm feeling. Its what I am thinking. Not in a good place.

The fatigue is killing me. When I stand up I feel like I have 100 pound weights hanging on my arms and legs. I can barely make it across the floor to the other side of the room. People think I exaggerate--but I DON"T! I never thought a person could be sooo tired and sooo weak. And, if tomorrow I am up walking around easily people will say"I knew it wasn't that bad.Brother!!" But it WAS that bad and tomorrow or tonight or this afternoon it may be that bad again. "Yeah, yeah. What a hypochondriac!" DAMN this Fibro! Sometimes I wish it would just do me in so I could be done. And, so everybody else could be done, too. DAMN IT! damn it...damn it...damn it.

Later,
me
CJ,in time (really? when???)