Tuesday, April 27, 2010

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.


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

Sunday, April 25, 2010

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.

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

Friday, April 23, 2010

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,

Friday, April 16, 2010

fire storm or solar flare?

I am in a very, very long, intense flare, or as my sister (who has this nasty thing, too), says "firestorm" (much more accurate, don't you think? Or maybe even "solar flare").

I have been in so much pain for months. There have been no okay days. There have been no not too bad days. There have only been DAMN IT, I HURT days -- for months. I know it is stress. Way too much crap happening all at once. And, its been that way for way too long, too. One frickin' thing after another. Why does it go like this? Why is all of this happening to my family (I include my extended family, we make any soap opera look like Sesame Street)? Other families manage to have dry spells of misery-less-ness (I often make up words - the right ones won't come to me). Why the heck can't we just have one nice week of blissful rut-ness? You know--"I'm in a rut," people lament. They have no idea how lucky they are!

Along with the unending pain is an exhaustion I have never known before. It feels as though I have walked 500 miles. I feel so weak, I can barely raise an arm or a leg. It is all I can do to get from one side of the room to the other. And then I can hardly catch my breath. I know I am out of shape--okay there is absolutely NO shape, just a big, big blob of shuddering humanity -- but even at my worst before, I could breath. I am now developing a fear of suffocating, because sometimes I feel as though I am.

I genuinely feel sometimes like I am suffocating. But, there is also the feeling of suffocating under the weight of this chronic illness. I can't seem to make any positive moves toward accepting my life. Or, even figuring out how to live this life.

Michael J. Fox has been haunting me lately. That man is a marvel. I have been seeing him or hearing about him often the last few weeks. He was on "Rachael Ray". He is on the cover of Reader's Digest, "What My Illness Taught Me". Where does he find the strength, the positive outlook, the ability to keep going? He shames me. I am a sniveling coward and wimp. I haven't even gotten up the guts to read the article yet. He just smiles out at me from the cover. And I feel ashamed of myself. I should be able to do this. Other people do. Others go on with their jobs. They go on with their commitments. They go on with their life. Look at Michael. Smiling.

Thursday, April 15, 2010

No pain, no gain...BS!!!

So, I started physical therapy yesterday. Actually, I was "evaluated" for physical therapy. I guess I passed because I was given exercises to do at the end of the appointment. They do not call it Pain and Torture for nothing. I had high hopes for this therapy (I have had PT many times in the past for various things) because there was actually a place on the Health History that had a box for Fibromyalgia! Right in there with High Blood Pressure, Allergies/Asthma! First time I have seen that. So, here I am thinking, "This is great, they will recognize that Fibro people have a different pain tolerance than other people." WRONG! "'Hurts' does not equal damage." HA! You want to see me today and see what damage you caused yesterday?

This PT is not for Fibro. No, I am collecting other "ills" just because the Fibro alone is not enough. This is for PTTD--I tore the hell out of, basically ruptured the MD thinks-- the posterior tendon in my right foot. That would be the one that does the bulk of the work for things like...walking. Which I can not do right now. Not without great pain that is. This is not helping the Fibro at all.

I see a new neurologist next week. I believe he is the sixth. Why do I not have a good feeling about this?

CJ, in time

Wednesday, April 14, 2010

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.

CJ, in time