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

An Open Letter To Celia

Oh. my gosh, Celia your symptoms (aside from the breast infection (?)) are classic Fibro. I was going to say so, but went on to read about everything else you have going on and I felt it best to wait for that resolution. Awful as Fibro is, you are dealing with much larger issues right now.

A primer on Fibromyalgia (by CJ, my opinion, my experience only):

• You may or may not get the impression that it is "all in your head" from the first doctors you see. There are still some doctors who believe it is due to depression, unresolved life issues, and "soccer mom" syndrome. I recently saw another neurologist who was of that opinion. RUN, do not walk, away from them as fast as you can.
• Your GP should be able to refer you to a Rheumatologist who treats Fibro. The search for an appropriate doctor may take awhile. Be prepared and try not to become too discouraged. They can say things that can beat you down, but stand firm until you get a reasonable diagnosis and treatment plan. There are some wonderful doctors out there that truly care and want to help you manage your symptoms and reclaim at least some of your "old" life. Take copious notes! Or have a trusted family member or friend keep them for you. But, you stay on top of them.
  
• There are many approaches to treating the symptoms of Fibro. Some use natural or non-traditional treatments, herbs and the like. They may or may not work for you. Before trying any herbal remedy check with your doctor. One of the problems with herbs is that they can have very, very bad consequences when mixed with traditional medications. I am not dissing a natural, non-traditional approach at all. I am not promoting a traditional approach only. My experience has been that I AM IN UNBEARABLE PAIN. But, you need to know that I have at least two other serious incurable conditions that also cause chronic pain. I personally take four medications daily to manage my pain. Note I said "manage", I am still in pain each and everyday. The meds make my life livable (most days). I have tried both non-traditional and traditional treatment and I am using a combination of the two. How do you manage the unpredictability of the level of pain from one day to the next? Well, hopefully you have a "break thru" pain med that you do not take daily, only when you are experiencing a particularly rough day. This might be Tylenol 3, Darvocet, Vicodin, or Percocet. Take notes. Keep an up-to-date list of all of the meds--Rx or OTC--and the dosage you take with you at all times.
  
• Yes, the fibro drugs can make you a stumbling zombie. Try and give your body time to adjust and give any meds a fair chance (within reason, of course.) Warnings are included with all medications: READ THEM. Log your symptoms of possible side effects and report them to your doctor. The pain meds for nerves cause sleepiness. It may take a few weeks or more to adjust to them. These meds can be dosed for once a day, twice a day, or three times a day, with one, two, three, or four pills each time. As I say, it takes time. BUT, do NOT ignore side effects. They need to be reported ASAP! Take notes.
• You will probably need more than one doctor to manage this disease. Presently I have only two, my rheumatologist and my GP. But you may also see a pain management specialist, a physical therapist, a physiatrist (a doctor who specializes in physical medicine and treats the whole patient, not just the symptoms - I had a jewel of one, then insurance and finances stepped in!), or any of several other specialists.
• Now the hard one: "When will the pain stop?" The truth, probably never. However, you will find success stories of people who have come almost full circle and rarely experience the fibro pain. Unfortunately, these are hard to come by. The pain can, however, be managed. Some days quite well, some days not so much.
  

I hate, truly hate, that I have made this sound like doom, defeat, and despair. But, Celia, it is one of the most incredibly difficult, exhausting, and depressing struggles a person can face. Now, before people start throwing things at their monitors: of course there are more serious, complex, and pain inducing diseases. But, this is not a contest. There is no reason to say "You think you have it bad?" Believe me, Fibro patients heap the guilt upon themselves about this all of the time. We know there are people out there facing much more dire diagnoses with much less positive prognoses. Fibro is not fatal. We know all of that. But, Fibromyalgia is a serious condition. It is chronic and incurable. It is extremely painful and exhausting.

I am praying for you in all manner I can think of. I am here for you. I hardly know you, Celia, but you have touched my heart in a very special way. I care and I would like to help in any way I can.

Gentle hugs with fondness,

CJ


A Disclaimer to anyone else reading this: I am not a doctor. I am not prescribing nor am I diagnosing anything. I am a Fibromyalgia and Chronic Fatigue patient. PLEASE, see your doctor if you have any concerns or symptoms.

Is there a point?

I am having those thoughts when I really wonder if its truly worth it anymore. I hurt so much and I can't sleep and I am way past exhausted. The meds barely take the edge off. The side effects of weight gain, excessive perspiration, swollen legs and ankles make me totally miserable and a horrid sight to behold. I am 100 pounds over weight and because of this damn health of mine I can't make a dent. I have tried. I have tried! (That "!" is for the people who give me the look "What a lazy, fat slob with no self control.")

What is the point in living this way? I am barely able to do the stupid little things everyone must do--grocery shopping, going to the bank, paying bills (hopefully on time), laundry. That is it. That is pretty much my life. The rest is spent sitting on the couch watching TV. It hurts to hold the phone up for very long at all, I'm on my 8th or 9th set of head phones. It hurts to hold up a book, a magazine, a newspaper. It hurts too much these days to do this--type or browse on the computer. My neck and shoulders are on fire with pain. My shoulder muscles are hard as a rock, my neck pinches with every move.

What is the point? I am soon to be 56 years old, but I feel 86. I truly think I should stay put and let my husband start a new life in New Orleans. If I suggested it he would say no way, because he is that kind of guy. But if he was honest with himself he would love the opportunity. I am not the person he married, have not been for years. He would not be leaving me, he'd be leaving what I have mutated into.

I hurt in every cell in my body. I have already taken all of the medicine I can. I guess I will go for the ice and heating pad and maybe a rum and coke. Yeah, I know what most of the 24 meds I take say on the bottle. But really, what possible difference could it make?

me
CJ, lost in time

p.s. Don't call the cops. I will not do anything. My son and I live here alone and I would never do that to him.

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

Do-overs

It is amazing to me how much all of us FM/CF sufferers have in common. We share so many of the same thoughts and feelings, coping mechanisms and non-coping mechanisms, ups and downs, ins and outs. So many of us are the Type quadruple A personality. We used to "do" and now we can't, and it makes it all so much harder. My family used to tell me I was burning the candle at both ends and in the middle, too. I was going to burn myself out...Do you suppose that is what I did? Burned myself out and now the jokes on me? OMG what a horrible thought! Can I have do-overs?

Many times over the last five years, egad! going on six years, since I was "labeled" as having Fibro I have wished to the heavens I could go back and take better care of myself , make better choices, evaluate and make better decisions. YOUNG PEOPLE OUT THERE--WARNING!!! YOU REALLY DO TAKE BETTER CARE OF YOUR FAMILY IF YOU TAKE CARE OF YOURSELF FIRST!!!

Another old joke: If I can't be a good example then I can , at least, serve as a horrible warning.

I am not, for one instant, implying that I think I brought Fibro on to myself. No, what I am beating myself up with is the fact that because I was in lousy shape before I got Fibro that I have made it triply hard to manage it now. I never dealt with stress so, as a result, I have several other physical conditions that are associated with stress and with not taking care of my health in general, like not regularly exercising, not eating healthy, and not dealing with stress!

Now those health problems are in a vicious cycle with themselves. The medicines cause side effects that aggravate this, which also makes that worse, and this issue makes it nearly impossible to exercise which affects my eating habits because I am depressed, which makes me eat too many carbs, which makes me gain weight, which aggravates those two problems which scares me and initiates the anxiety and drops me deeper into the hole of depression which affects my sleep that is also affected by the fibro and makes me sooo tired and the chronic fatigue and increased pain cause that last domino to tip and.....

You have self-imploding CJ.

Stop the world, I want to get off.

Later,

me

CJ

p.s. I have been alone a lot lately and have been quite introspective. Please don't think I am sitting back letting things happen to me. I have been observing and scrutinizing my life of late. I am still working on this "thing" and trying to determine the best way for me to attack it.

I have had a lot of input from family and friends and fellow Fibro patients. A lot. I appreciate the information, I really do. But simply because it worked for so and so does not mean it will work for me. I want to continue receiving the input, but please, all of you out there that mean well, give us information, support us, but please don't judge us.

This is a complex, confounding array of symptoms. It is debilitating and, as of today, incurable. It’s not possible that you used to have it, but now after your treatment you are cured. I am elated for you that you are no longer in pain from whatever it was you had. But, don't judge me because I don't jump on the band wagon of your "cure". I have tried so many, many things over these five plus years. I may have tried your solution, I may have not. And, I may have not because it is too expensive. It might not have coordinated with the myriad of other "conditions" I have. You really don't know and I don't want to list everything I have tried and you sure the heck do not want to hear about all the things I have tried. So, please continue to offer me information and most importantly offer me your support. But, please don't judge me. I am doing the best that I can.

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...

Friends?

I ran into one of those "friends" that unceremoniously dropped me over a year ago. This was a group of seven "friends" that had been together for over five years, that emailed almost daily, that got together at least 2-3 times a month. This was a group of ladies I thought were forever friends. We would get the whole gang together with our husbands and go out to eat, watch the super bowl, etc. We talked about how we would still be together in our 70's and 80's. These were my friends.

And then I became depressed, seriously, critically, clinically depressed. Then the Fibro kicked in with a vengeance. I retreated. I crawled into a hole. I became a zombie, doing only what absolutely had to be done for me and my family to exist. And, only exist. The living, the life was gone.

Well, I guess my "friends" had enough. They stopped emailing. They stopped calling. They, as a group, decided I had "moved on". They, as a group, were no longer going to email or call or invite me to the get togethers. They, as a group, were through being my friend. Can you imagine? I did.

I pictured them gathered around the table. What to do about CJ? She doesn't email. She doesn't come out anymore. She must have moved on. We will, too. We will drop her as our friend. All in favor, raise your hand. Opposed? No? No. She is no longer our friend.

So, today this "friend" sees me for the first time in over a year. I am getting a pedicure (a luxury I allow myself every now and then). She is finished and comes over to me. "CJ, how are things?" Like nothing had ever happened. Like she saw me last month and wanted to catch up. She peppered me with questions. How's your husband? How's your daughter? How's your son? With each question I had to fight the tears back. I dug my nails into the palm of my hand. Harder. Harder. How could she act this way? How could she be asking about my family like she was still a part of my life? How could she act this way after the way she treated me? What the hell is a friend, anyway? Can I melt into this chair and get away from this pain? Does she not see it? Hear it in my voice?

No. She couldn't. I was the cashier at the grocery store - the woman at the dry cleaners - the girl who just did her nails. I was just another person in her day that required polite behavior. Just another faceless person to attend to when you are polite and behave with good manners.

She didn't see me. She didn't see the pain she was causing. The pain she caused. I have dreaded this day. The day I would run into one of my old "friends". Living in a hole left little chance that I would. I was safe in that hole.

And now I hurt. And I am so tired. I hurt physically and emotionally. I can feel the tension in my shoulders and in my neck. And in my hands, with the indentations of my fingernails deep inside my palms. I hurt and I have a headache. I have a killer headache from holding back the tears.

How could she not see?How could they not see? How could I be put out like yesterday's garbage? Gad, I hurt. I am so tired. I hurt. I hurt. I hurt.

Stress? Yes, it affects fibro symptoms.

me,
just me

but maybe, just maybe,
CJ, in time

There, but for the grace of God...

I was reading another Fibro blog -- A Patient's Perspective on Fibromyalgia -- and she was talking about the effects of stress on fibro symptoms. How timely. I am a new blogger so not many follow my blog. Those that do are the cream of the crop, though! Anyway, I haven't written anything in almost two weeks. Did ya miss me? The effects of stress got to me. Big time!

I have, since February, been dealing with repairs on my house, needed due to the three leaks found in my roof--plus the ensuing mold. It is amazing how much mold we can grow in the desert. Since the discovery of these leaks I have had infernal machines running 24/7 x 90 some days, various forms and all manner of destruction in order to restructure, all manner of handymen in and out of the house, and all manner of "we also found..." or "this needs to be done before we can even begin to look at...". This nightmare began approximately one month after my husband packed up and moved out of state to take a new job. The plan was for me to follow after the house was sold. I figure at the rate we are going I will be joining him sometime in the year 2012.

During this same time, actually since December, I have been trying to get someone, anyone, to figure out what is wrong with my right foot that makes it nigh on to impossible for me to walk. You know another problem about having fibro? Now, any pain I have is chalked up to fibro (or the peripheral neuropathy). Well folks now four months later, No, it’s not the Fibro or the neuropathy, it is a ruptured tendon in my arch. Now starts the PT.

So my life has been hammering, sawing, stomping five days a week. Infernal machines 24/7 seven days a week. PT two days a week, sprinkled with an assortment of doctor appointments ("You need to exercise.") generally one a week.

I snapped under the pressure. And, I have MISSED you guys! But, I couldn't bring myself to write. What a wimp. Rose had her appendix taken out and she's still writing! Gees! But, the kicker was a Mother's Day story in our paper about a family of five who have been living in an old school bus since February, a step up from the month they had lived in their van, since they became homeless. And, the mother was just diagnosed with Fibromyalgia. Can you imagine? This week a program here, for homeless children, is moving them into an apartment and will help the dad find a job. Can I get an Amen? AMEN!

So, I am thankful for my leaking roof, because I have a roof. I am thankful for the noise and the handymen, because we can afford to fix our home. I am thankful that my husband is living out of state, because he now, after nine months of unemployment, has a job.

I have two fantastic children that make me proud, make me laugh; make me feel loved every day. I am in a flare of all flares, didn't do a thing but watch a marathon of Eureka on the Syfy channel with my son ( my daughter is married and lives out of state), but I had a great Mother's Day!

me
CJ, in time

Rose, I am so glad to hear you are okay. Don't try and come back too fast---TAKE CARE of yourself!!! HUGS!

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.

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???)

How do you start?

So, how do you start one of these things? It seems odd to just jump in the middle of my life (Is this the middle? No, think that happened a few years back. Okay, more than a few.) Start at the beginning of this Fibro thing? I have no idea when that was. It seems like it has always been here. I read about someone who said they have had Fibro for over 30 years! Yikes! Well, I guess if you can think back that far maybe you can trace it. Me, I can't think past this morning.

It seems like this THING has always been here. Yet I know it hasn't been this bad. I actually used to have a life. I do know that. I was a mover and a shaker. Well, I did things. Lots of things. I never learned the art of saying "No". That is until this THING came along. Now its "I'm sorry, no." That happened enough times that I lost a whole group of friends."Friends" that I had for over five years. They decided I had "moved on". They said they were still my friends. They just took me off the group email. I have heard from one of them in the past year. She sent a card.

Moved on. Yeah, well. I guess I have moved--to a totally different world. A world of unending pain. A world of unrelenting fatigue--make that exhaustion. A world of doctors, one right after the other. A world of medicines, one right after the other. A world of unending depression. A world of heart jumping anxiety. A world of "No, I'm sorry."

A state of existence. I don't feel like I am living in this world right now. Just existing. There is oh so much more than the Fibro going on that has me in this hole. It would be the "whole" of my life. But, the Fibro makes everything else so hard to manage. My health, or lack of, is ruling my life. Everything depends on how I feel from moment to moment, hour to hour, day to day. For so long the pain and exhaustion have had me tied to the couch.

I have got to find a way off of this couch.

me,
CJ, in time