What does it feel like......

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TammyJ
Regular Member


Date Joined Feb 2011
Total Posts : 51
   Posted 2/6/2011 6:10 PM (GMT -6)   
What does it feel like to know that when you wake up in the morning you may not be able to get out of bed? I had a whirlwind romance with a lovely woman who has Lupus and Fibor and she put an end to the whirlwind part of us first and then I agreed that I needed to work on a few things within me too before I was ready to live with her and marry her. Even though I had asked and she said yes.
 
One of the things she said to me was that she didn't know if she could involve me in her life at that level because when she goes to bed at night she isn't sure if in the morning she will be able to get out of bed. What does that type of fear feel like? I am sober and I understand the fears of not being good enough and not being worthy, but her fear is a whole different level. What does she feel like?
 
I don't know how to respond to her when she says that she is afraid she won't be able to get out of bed. I have played the all confident the universe revolves around me and I can handle anything even you not being able to get out of bed role and all that has done is portray me as immature and naive and it pushed her away and as much as it hurt my pride and ego I had to admit to her she was right that approach was not what she needs. And I had to admit I don't know what she needs, but I am willing to go and learn and try to find out what she dies need I love her that much.
 
I don't have a clue how to talk to her. I have chatted with a couple people over the weekend who have helped me immensely on this site and I will forever be grateful. Like today she had been up helping a friend who had surgery over the weekend and now she is home and utterly exhausted but when I asked how she was holding up she said "fine"--"I said I know you must be exhausted not sure that qualifies as fine you don't have to minimize things you must be really tired today"--I got no response because like she said she is taking her pills and going to bed--I'm trying to be ok with not getting a response because like I said I understood she must be utterly exhausted--but to say it and to feel ok with not getting a response are two different things--I don't want to come off as condescending but at the same time I want her to know I know she is not "fine." Did I do ok communicating what I wanted to her?  How would you suggest I express I know you're not fine and you can tell me that and I'll right here to listen to you even though I am powerless and can't make you better?
 
I also want to ask what the guilt feels like that she talks about--she feels guilty for needing people to take care of her for long periods of time. I want to be a part of taking care of her in her dealing with chronic illness--she means so much to me, but she keeps saying that she has to work through her guilt of involving me in her illnesses--how do you do that--work through the guilt--in my mind when she says she feels guilty I hear she doesn't trust me to take care of her--but I guess over the weekend I have come to realize that trust has nothing to do with it. What does that guilt feel like and how do I help her see that she has nothing to feel guilty over?
 
I have broken our lives up into tangibles and untangibles--she gives me all the intangibles and I do mean all of them--gentleness, kindness, forgiveness b/c I've been a real jerk the last weeks of weeks b/c I couldn't feel what she was going through, patience, love, tenderness, passion, she motivates me to want to be all I can be--these things are priceless to me and are intangibles and there are more than I listed that she so freely and readily gives to me--when we first started talking about slowing down and backing up and giving each other more time to get to know each other and for me to really take the time to see how much my life will change being with a person with chronic illness and giving her time to work through her guilt she kept saying I don't know if I'm relationship material anymore--I didn't understand what she was saying--I am not sure I completely do now, but I understand it more than I did a few weeks ago thanks to this website.
 
What does that guilt feel like and how to I let her know that the tangible stuff like laundry, housework, earning a living, cooking are all things I have to do anyways so I don't care about those things that somedays she can't partake in--what she already gives on her sickest day is enough for me and what she gives is that I know she wants me in her life--that's enough for me--but her guilt doesn't allow her to believe that--now she is saying she isn't sure if she has what it takes emotionally to be in a relationship--again she isn't seeing herself through my eyes and I don't know how to make that happen--can I make that happen for her?
 
I don't know much, but I do know I want to marry her and I need to learn how she ticks so I can support her and take care of her without making her feel guilty--I keep saying I'm volunteering to be with you and the chronic illness, but she doesn't think I know what I am in for and she is right I'm just learning.
 
I'd like any help you all can give me--I can't dump all this on her because it is inappropriate--I can talk to her in small doses, but I have to work through a lot of this on my own--she told me I have to find my own way and I was angry about that before because I took it as her rejecting me but now I get what she is saying--I do have to find my own way and share with her what I am finding, but not burden her to help me find the way. Hope that makes sense. I'm calling my old counselor tomorrow to see if I can get back in to get some help--I'm willing to take care of my immaturity and my naivety to be with her--how do I show her I'm doing it without being over zealous and too enthusiastic and too in her face--because all that just pushes her away.
 
Thank you.
Tammy

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 2/6/2011 9:42 PM (GMT -6)   
First, I applaud you for taking the initiative and asking some tough questions. We are all different and respond to this disease every way imaginable. I would strongly suggest that BOTH of you talk to a counselor, together and alone. And maybe print your post out and take it with you to the counselor. It would be a good starting point. Good luck.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

TammyJ
Regular Member


Date Joined Feb 2011
Total Posts : 51
   Posted 2/6/2011 10:13 PM (GMT -6)   
Thank you Fran--that is a good idea. I like the comments and the relief that I am not alone, but no one is answering or describing to me what the guilt and fear feels. I guess it is even difficult to discuss such difficult things here too. I just know that the emotions from chronic illness this far are overwhelmingly powerful--it is weird to feel so much--it feels like I have never been so alive because I am feeling so much--does anyone know what I mean by that? And it is not a happy alive it is just a real feeling that OMG I'm alive finally. Thank you.
If you see yourself in others, then whom can you harm? .........Dalai Lama

ebteb
New Member


Date Joined Dec 2010
Total Posts : 12
   Posted 2/9/2011 5:02 PM (GMT -6)   

Hi Tammy.  Your post touched me in so many ways.  I actually did a double take b/c for a moment, it seemed like it was my husband posting your thoughts!

My first thought on dealing with your side of the street -- you mentioned you are sober.  it's going on 8 yrs for me. My husband has 7.  Al-Anon has been helpful.  I'll just leave that there.

The guilt.  Wow.  The guilt.  Here's the thing with that from my own personal experience, and bear with me please, I may be a bit long-winded, but I truly get the guilt part.

And really, when I'm looking at this right now, (thank you for your post as it is helping me clarify some stuff I've been going through here...) I believe it's less about actual guilt and more about acceptance.  Go figure.  Anyway, here's my experience and I hope it offers you some strength and hope:

In December 2006, after being in a really abusive relationship with a very wealthy man who was older, would not permit me to work, nor allow me to have a cell phone, computer, clean the house or do the laundry (I didn't do it to his specs...), talk on the phone, watch tv or even take a walk while he was in the home, I was "strong" enough to leave him.  Before meeting him, I was extremely successful, traveled coast-to-coast for business, made a very good living.  After we met, that all changed as he didn't want me to work, blah, blah,blah.

Anyway, the point is, that when I left, MY plan was to get back into my business and let me tell you, I was soooo excited!  I didn't take anything from my ex; I didn't want anything.  I had been sober for 3+ years, I felt emotionally and physically strong and healthy.  I really did.  I was just thrilled to have my life back.  I can't even tell you.  It was so incredibly, unbelievably empowering.

By February 26, 2007, however, I was in the hospital.  Almost completely blind from what turned out to be the 1st of countless episodes of recurrent autoimmune optic neuritis related to Lupus.

For the first year, the blindness came and went so often that I was on intervenous steroids 5x's in one year and high doses of oral steroids (no less than 30mg) the rest of the year.  I had reverse affect reaction to the 'roids, meaning that my blood pressure decreased - literally while it was being administred!  I lost weight and I was constantly absolutely exhausted. 

Self-worth?  What self worth?  Here this former six figure income self proclaimed real-estate czar (okay-ego was wacked...) who thinks she's a real zero cause she leaves her job for this whack-o, finally gets the nerve to leave him so she can work, AND CAN"T EVEN GET THAT RIGHT!  To add insult to injury, I couldn't even hold down my 39 hour/wk job at JoAnn Fabric as the CUTTING counter girl!!!!

Tammy, I was able to find peace with the above and the not being able to work at two other "meaneal jobs" through God's grace only.  I was humbled, finally, because my ego and identity was so tied to my career -- I was my career.   But, outside of the career deal, I must tell you that there has been much more humiliation, acceptance, peace, humiliation, acceptance, peace, etc.  It's hard to discribe the disgrace of not knowing you have to pee then completely losing your bladder in public.  To go to the grocery store and accidently knock down an entire display b/c you are so dizzy or lose your balance.  To bounce a check b/c all of a sudden you can't remember how to subtract.  To not be able to pull the laundry out of the washing machine cause it's too heavy.  Too drop the milk carton cause it too is too heavy, etc.

Last Thursday, Febraury 3rd, I had my disability hearing.  I thought I was prepared.  I had been waiting since september 2008.  I thought I was prepared.  But when the judge started asking me questions about my days, I just started sobbing.  I mean sobbing.  I guess I was still holding on to that career dream ego of I used to.. You see, I used to be able to rember entire legal arguements and contract verbatim.  Verbatim.  I was my advisaries worst nightmare!  I used to make more than 100K a year.  I used to spend weekends in Aspen following a 70hr workweek out west.  I used to be a triathlete.  I used to...

Well Tammy, I am not that woman anymore.  That woman has morphed into something new.  Something very very different.  That's the hardest part in all this for me.  Not being who I was.  Yeah, okay, so alot of what I was was an a*#hole.  And, yeah, I know, we all get older and our bodies change and stuff.  But this disease is so flippin tough.  For one, I don't even look sick.  For another, I never know if I'm going to have a good bad day or a bad bad day.  I know who I was.  I Know who I am today right now, but who am I gonna be in 10 minute or  5 hours from now?  Let alone tomorrow, for goodness sake!  The unpredictablibity can be mindblowing, IF I LET IT.  And, some days, or parts of days, I do.  It's hard sometimes to find the positive in it.  What I TRY to do is stay out of myself by helping others.  People tell us to stay in the moment (in recovery).  Well, sometimes the moments suck, ALOT.  So, I TRY to muster what strenght I can to talk to others -- sometimes just to listen.  I am selective.  Part of my illness includes brain atrophy which means I have literal periods/chuncks of time I can't recall.  Just like drinking without the booze!  But, it forces me to be somewhat protective of whom I share so deeply with.

I want to contribute, financially, physically (around the house).  It is very difficult for my husband and I right now financially.  He's in construction and out of work and although I won my case with disability, I won't see any of that for another 6 months.  That makes me feel guilty, ashamed, less than. 

It comes down to another level of acceptance.  Acceptance of where this disease is right now, what CAN I do about it (help others, today I can take a walk...), what CAN'T I do about it (change the dx, personally I can't really afford to feel sorry for myself but sometimes I do), then do what I can, accept what I can't and then that peace will come again! 

I'm not certain this will help.  What I can tell you is that my husband, like you, struggles with me.  Patience.  Prayer together, if that's something you're into, works very well for us.  We pray for "patience, tollerance and love for one another as we struggle through this journey".  Exact wording.  And keep on talking, a problem shared is a problem cut in half!

Blessings,  Elizabeth


TammyJ
Regular Member


Date Joined Feb 2011
Total Posts : 51
   Posted 2/9/2011 5:57 PM (GMT -6)   
Elizabeth--thank you for your letter--all of this has been quite an eye-opening experience for me--March 15 I celebrate 3 yrs--this is my 2nd time around--1st time I had 10 years--everything looked good but I was dying on the inside and now I've lost everything in sobriety and the inside is starting to get better--*** :) anyway!!!
 
A woman wrote to me yesterday on the Fibro thread and I have no argument with anything she said in fact I am trying to decide if it makes me not the type of person I want to be because I need and want to be in a relationship with someone who can be in a relationship with me. I believe if "my girl" and I would have been living together and she left our relationship to deal with her illness flare mentally, emotionally and physically I would have handled it differently. It was too much for me emotionally to go from I want to move in, to thank you for sharing becoming a grandparent with me, to I've picked out my wedding dress and I want to take your last name when we marry at the end of the year. I told her from the beginning that my struggle would be in not having anything to do because I couldn't care for her physically if we lived a part--I was up front and honest--I need to be able to help like make a cup of tea, her super or help her out of bed--I am a doer and so that little difference would have meant a lot. This is what the woman wrote:
 
"This is the hard part. I have no doubt by what I read that you love her but your love is very "needy". Trying to keep up with your "love" is exhausting and that is very likely the problem. Even though you say that you will always be there for her, you are constantly putting the pressure of that on her. Your constant need to know how much she loves you, what you can do to change, how does she want you to change, what is it she expects from you, etc, etc is putting all the stress of the possible success of your relationship on her and she is just too darn tired to deal with it. Better to be alone and in peace than have a loved one around that has a constant need to be reassured. Instead of just doing what you can to help (when needed) or giving her time to be alone, you constantly badger her about how much you need to be in her life. Does this make sense to you??"
 
I have no reply to such a comment and I have to do some serious soul searching because as we know in recovery our personalities don't change, but our behaviors due--so I am trying to change my behavior and treat contacting "my girl" like not drinking--I sent the passage above to her and I've txt her today with no response--so I have to get through the rest of the day being abstinent--and tomorrow like I get on my knees to ask that I be kept away from a drink I will ask for the ability to stay away from her--I am a great believer in silence speaks volumes--my job now is to deal with how I feel about being "needy" and the type of person who badgers someone who is chronically ill--doesn't make me feel very good about myself and so I have some things to accept about me. Am I beating myself up yes--the program has taught me that I need not take anymore than 50% of the blame, but how can a chronically ill person be responsible for 50% when they are just trying to get through the day.
 
So thank you again--this website has absolutely blown my mind with the love and honesty and caring that pours out of everyone--you truly are wonderful people.
 

 
If you see yourself in others, then whom can you harm? .........Dalai Lama

Hickoryone
Regular Member


Date Joined Feb 2011
Total Posts : 32
   Posted 2/9/2011 6:33 PM (GMT -6)   
Elizabeth,

I know what you mean about pride in working, a sense of usefulness, etc., However, what I have learned is that there ARE NO JOBS that are too below me, someone has to do these jobs as well.

Society has us all thinking that we should be these "success'" but what is the truest definition of the word? To buy a huge home, too big to clean yourself you have to hire someone else to clean it, a brand new expensive car that looses value each year...a very poor investment....but hey, it looks like I'm a success after all.

We need a better understanding of what success really means in terms of us as humans. This is much of the economic problem facing many today, bought too much house for what they could really afford, too fancy a car, credit card debt to keep up with the latest in overpriced cloth?

Success to me is my happiness, friendships, having a great day, dancing till I'm tired, and doing the best I can at any job....no matter what job it is...that I can do. It's priceless really.

I believe in a Higher Power, you believe in God as he is described to you throughout your life. I also believe it's not my higher power nor a God that gives me what I need on any given day.....it is from within myself I gather my strength and success'.

As I have explained to Tammy.....we go through a grieving process just as if we had lost someone to death; all steps are included in the processing of the loss of the healthy person we once were.

I could tell by your post that you are still very hung up on making lots of money, jet setting, etc., Ask yourself if your life is REALLY any less for not being able to pull in all that cash....go to Colorado for ski weekends, etc.,? Thinking that these things bring a happy life is a human lie....the worst human lie ever told.

Not being able to do that any longer in no way takes away from the person you truly are. Whether you are healthy or not, we are not, there is much to gather from life.....I have, despite making some nice money in my time, never forgotten the simple pleasures in life....the smells after a rain, the silence when it is snowing out that comes across the land, the sound of ice as you stomp on a mud puddle in the early spring.

I actually have a huge swing I put up on my property. Yep, a swing. I loved it as a child, I love it still today! It's a form of meditation and it's helped me keep my muscles in my arms, stomach, shoulders, and hands in good shape since I am not as active as I once was. Swinging back and forth, high as I can go...butterflies in my stomach....looking at the trees, clouds and what they look like, etc., Perhaps you can find something like this for yourself, don't think of it as childish either if you like things like this......to help align your spirit with acceptance.

I learn to live with the guilt of being ill and not being fully "present" in those I loves' lives by recognizing it is not something I can help, not something I asked for. This is easiest to do when running a low grade or fighting malaise and fatigue since your mind gets into some sort of "I could care less..." mode....all you want is sleep, the low grade to go away, etc.,

I wish you the best in your process of grieving because that is truly what it is. If I have learned that any cliche' is truth it would be...."Time works to heal all things." The longer one is chronically ill the more in-tune they become in dealing with all the steps that are a inevitable part of a chronic or terminal illness.

My best to you......

Hickoryone
Regular Member


Date Joined Feb 2011
Total Posts : 32
   Posted 2/9/2011 6:58 PM (GMT -6)   
Tammy,

Whew! That response to you, about you being needy, etc., was quite a blow really.

You are treading in uncharted waters and this person who responded that way apparently didn't "get that". I did since I began talking with you.

The flow of any relationship is tied to knowing.....yours is a "new" relationship and it has with it a "twist" if you will. Under the best of circumstances it's difficult to gather that "harmony" when wanting to be with another; you each bring to the table your life.....they can be as differing as night and day.

You are, I notice beating yourself up when you think you didn't act appropriately for whatever the circumstance with your girlfriend.......you are doing the best you can given what little you know. You will have to stop that...lol

I am unsure it's tied into your history......I am a child of a alcoholic and trust me when I tell you I know of GUILT. Children of alcoholics feel guilty about EVERYTHING and I have had to learn in the last 26 years how not to feel guilty for things I had no control over, was not part of, etc., I don't know, you tell me...is it the same for the person who has the substance problem?
I could learn this from you, from my father's perspective and you can learn from me about having Lupus.....win/win.

This chronic disease has taught me alot about guilt that I needed to learn. It has taught me that when I have no control over something.....how can I, why should I...feel guilty? Am I thankful for Lupus and what it can teach? What it can teach, yes!

If I said when someone asked, "How are you?"...and I say "Fine..." that is because I don't wish to go over the list of the things that hurt, my exhaustion, etc., Human pride perhaps but I believe it has more to do with the fact that oftentimes I am too tired or running a fever and all I want to do is sleep. It's a "stock answer" and anyone with the disease will tell you that.

If she tells you..."I'm ok," or "I'm fine"....it's best to leave it at that as that is her way of ending the topic on how she feels.

If you ask a person with Lupus "How are you?" they will always say the same thing...."Fine." There is a "vulnerability" the human has when being sick and it includes admitting they in-fact don't feel well. I don't know if this stems from some form of "survival" mechanism that is actually primitive (instinctual) or if it is a societal thing that has us not ever wishing to look "weak" and vulnerable. Then there is the Lupus patient who feels many think they are fine because of how they look (I went over this with you)...and so any complaints are looked at with skepticism by others; something one with Lupus deals with ALOT. Perhaps if we could gush blood, our bones could somehow protrude through our skin for even just a moment while being asked....things would be far different.

I think given the circumstances of a new relationship....a illness involved....you are doing quite well; the best you can. The fact that you came on board to a site which caters to the disease she has shows great character.

My best to you Tammy....

TammyJ
Regular Member


Date Joined Feb 2011
Total Posts : 51
   Posted 2/9/2011 7:55 PM (GMT -6)   
You are a doll--yes beating myself up--rethinking everything--I don't think I need to go on--but I need to move on--I can't change how she sees me or what she thinks of me--and I absolutely have no idea what that is right now so I am leaving her alone "one day at a time." That is the best I can do. I can change some social network relationship status things back to single and let her feel I am moving on and that is about all I can do--she pushed me away--if she wants to talk to me or see me she knows where I live and how to contact me.
 
I guess what was the blow was not so much the being "needy" reply--it actually helped me hear what she was saying and has been saying--that fact that I couldn't hear is what made me immature and the fact that I couldn't shut my feels off or down or whatever it was she expected made me childish, manipulative and emotionally unhealthy--when I put it all together that pursuing her was stressing her out and that made me immature that was the blow--I thought being willing to take on a relationship with a person who has chronic illnesses was a mature thing not immature--I thought her last girlfriend was immature when she sat on the edge of her bed and told her she was ruinning her life because she couldn't play anymore was immature--I was the complete opposite which I thought made me mature--that was the blow--the fact that by suiting up and showing up and not running away when it got hard made me immature--I don't understand that paradox.
 
I think this is where I am at in my sobriety--if you were to ask my past relationships what I was like with them they all say the same thing aloof--and in the 3 yeas of being sober as I have learned how to be in the day, in the moment, in the present I have come to like somethings about myself that are NOT being liked be her--in this relationship I was completely in the moment, confident, self-assured, attentive, active, had patience the list goes on but all that ended when one day we were getting married and the next day we were friends--I am not saying that I didn't agree that we should slow down and that moving in and marriage should be a longer process than within the year because with a chronic illness I know starting a life with someone is a big risk and I wanted to be on better financial footing and emotional too if I am honest because I was just learning about the illnesses so I thought slowing down was good for me too--I just didn't realize slowing down meant she would disappear and I would be left standing empty handed.
 
I was absolutely fine with slowing down in fact it took some pressure off me to be honest--what I wasn't fine with is the emotional abandonment that came with the flare up--that triggered all the insecurities and I didn't act like her other friends who are able to let her go for months at a time--I don't know if I want to be that type of person who can just shut down and then turn it back on--I guess I was sooooo confident our relationship could endure anything that I thought she would be able to remain emotionally attached instead of just disappearing and then completely blocking me out--the more she blocked me out everything in me told me to show her you aren't going anywhere you love her and are sticking around no matter how hard it gets.
 
I'm not understanding why our love was so easy to shut off. I don't get how a disease makes you emotionally abandon the people you love--I don't love like that, but I'm also not sick like that--I can't identify with her--I can't identify with what she feels like lying in that bed--she txt me yesterday and asked if I was ok and I was honest and said no not really and that I was at a mtg so she would know that I was taking care of myself--I then called her later in the day and got voicemail and I told her I felt better and I was fine--no response--then I sent her the "needy" passage and told her that I feel this is what she has been trying to tell me--no response--I txt this morning said hi and hope the break in the weather is helping--no response--she doesn't want me in her life right now maybe not anymore--my trying to make her feel safe, loved and cared for turned her away.
 
I don't get how that works in a person when she is still able to tell me she loves me just a few days ago--I don't get it and I am not going to get and I don't know if I want to become the type of person who does get it emotionally because I have worked so hard in sobriety to feel and love and be in the moment with someone--emotionally having to shut down the way she seems to have wanted is a step backwards for me not forward--there was some effort for a couple of weeks but as the flare progressed and the pain meds began take hold there became no effort.
 
I may be naive to think that communication could have been better on her part--but then I read on this support page that she doesn't have the energy for emotional things and so that reality makes me feel like crap because I am needy--I need to hear I love you and I need to see her in my bed or on my couch I don't care how many hours she sleeps--she lives with her parents and isn't happy and doesn't feel comfortable having her friends over let alone her girlfriend--with her parents being gay is like in the military don't ask don't tell--too much stuff stacked against my personality and the direction I am going in, in my sobriety--I feel bad but I am getting angry now and I don't want to be angry at her and because that makes me feel worse of a human being.
 
I don't know--I am just incredibly confused--she said love wasn't enough--I don't buy in to that theory--I believed it was--she made her feelings about love not being enough into a reality and I am powerless right now so I am just moving forward--I don't know what else to do. And I know the becoming single on the social network site was out of anger on my part--but that is what I am POed!!!! because it didn't have to be this way--there was different choices she just didn't make them she went and hid in her bed at her parents.
If you see yourself in others, then whom can you harm? .........Dalai Lama

ebteb
New Member


Date Joined Dec 2010
Total Posts : 12
   Posted 2/9/2011 8:34 PM (GMT -6)   

Dear Hickoryone:

How I loved your note to me!  Thank you!  Thank you for the swing!  I love to swing!  In fact, I live in walking distance to one of those school yard swing sets where you can go super high and I laugh so freakin loud and hard!  And I laugh like a loon in heat so it makes me laugh even harder and louder, ya know.  You made me smile.  However, swinging probably won't be an option until about late April or early May here, so in the meantime, for me it's sitting on our covered front porch, late at night, all the lights out (we live in the country) listening to the beautiful music of the wind.  Doesn't matter how cold it is, I just add another layer of blankets and listen to it blow.  So awesome.  Thank you!  (Maybe not tonight, though, it's -7 out there, even the collie said, "enough").

Anyway.  It's so bizarre.  I really felt as though I had gotten sooooo past the whole 'money card'.  And, really, in large part, I have.  When I first got sick I had some sort of a spiritual awakening that opened my eyes to what was important and what was simply ego gone wild (how about ego on steroids?) and frivilous, ya know.  It's almost like I had to lose everything to get to that point if that makes any sense.  Then, during my hearing last week.  WHAMM-O.  Wasn't expecting that reaction.  Where the heck did that come from?  Anger, fear, resentment (of disease), anger again, and oh yeah,  did I mention that fear?  Fear of the unknown-- of the disease, of my disibility case, of not being able to support myself.  Anger at myself for getting sick came back - came back in an instant!  Freaked me out.  I was wipped out for three days.  The good news is that, in reading the posts from Tammy and you, I am putting the pieces back together so the healing can take over. 

Also, I wanted to share with you what I told the judge about those "little jobs".  And I do say that very sarcastically, by the way, because in my 20's, 30's and early 40's, that's what I would have thought they would be, but after I got sick, I was grateful at the opportunity to try to work!  Regardless, what I shared with the judge was that my job as the cutting counter girl was the best job I ever had.  I met the most wonderful women, children and even on occassion, men.  Had great and meaningful conversations with them, learned so much about so many different crafts that I hadn't attempted before, and the like.  But, I couldn't work the fabric gun b/c I could't rember how to from one order to the next, the bolts were killing me and the hours sent me into treatment three times.  I made $7.75/hr and worked 39 hours a week and it was the best job I ever had.  Period.  Oh, how my youth was wasted when I was young...

But, Hickoryone, you certainly have helped me clarify some things that have been fuzzy here for the last week and I am so very grateful.  Thank you!  Thank you for listening and for sharing.  Elizabeth


TammyJ
Regular Member


Date Joined Feb 2011
Total Posts : 51
   Posted 2/10/2011 3:46 PM (GMT -6)   
Good Afternoon everyone--thank you for letting me rant last night--I apologize--you all have been so kind and gentle with me--I hope I didn't take advantage. Tammy
If you see yourself in others, then whom can you harm? .........Dalai Lama

Hickoryone
Regular Member


Date Joined Feb 2011
Total Posts : 32
   Posted 2/10/2011 6:16 PM (GMT -6)   
Tammy,

All is well. There is nothing, zip, zero easy about living with one, loving one, or being the one with chronic illness. Trust we all have our days and venting is just the way to handle it so it doesn't hang inside you.

I hope things are better for you today.....

TammyJ
Regular Member


Date Joined Feb 2011
Total Posts : 51
   Posted 2/10/2011 6:30 PM (GMT -6)   
Yes--better than yesterday each day will get better. I have found a project for cargivers to keep me busy--if all that comes out of this past year is that I am able to create something to help someone then it was all worth it :) That is what life is about in my mind and heart anyway--helping others--it gives me incredible gifts and tons of gratitude and today I have some gratitude--yesterday not so much!!!!!! Peace :) And thank you soooooo much.
If you see yourself in others, then whom can you harm? .........Dalai Lama

TammyJ
Regular Member


Date Joined Feb 2011
Total Posts : 51
   Posted 2/11/2011 4:32 PM (GMT -6)   
I was just thinking about everyone--wanted to say hi--I am headed back to counseling next Thursday--that will be good. "My girl" and I talked to day for the first since that eye-opening epiphany I had with the "Needy" reply. I told her about the car I'm getting over the weekend--talk was just surface and then I was heading to a mtg so I said good bye--and that was that. I feel angry and numb at the same time. Just wanted to touch base. Have a good evening. What do you do with the emptiness after a nothing conversation?
If you see yourself in others, then whom can you harm? .........Dalai Lama

Hickoryone
Regular Member


Date Joined Feb 2011
Total Posts : 32
   Posted 2/11/2011 8:09 PM (GMT -6)   
Well Tammy.....you learn to do like I do.....let it go.

Sometimes it's best, and it's not easy trust that, to let what is be as it is. There are two possibilities and worrying won't change the final outcome....either things will get better or not and stay the same.

I have learned to pick those things that are important and discard general everyday issues and title them; unimportant or unworthy of my worry. As I say, this is not easy....unless you are a Sociopath or Psychopath.....it requires patience and time.

I wish you all the best.....

TammyJ
Regular Member


Date Joined Feb 2011
Total Posts : 51
   Posted 2/11/2011 10:39 PM (GMT -6)   
****!!!!!!!! Sociopath of psychopath--too funny--I say funny only b/c I relate and resemble those remarks from time to time. What an understatement that this about this not being easy--this is hard like being and getting sober is hard--it requires a different way of thinking and being--psyche change--of sorts.

Pick my battles--I'm trying to keep busy and limit the times in which I feel empty after a phone call--I don't have to feel that way everyday--just on the days I am spiritually fit to not have it consume me. Sometimes she doesn't even remember we talked.

When the person wrote the "needy" email it hurt my ego but I finally felt what "my girl" was feeling instead of just thinking I got it because I really didn't get it--I thought I was so wonderful how could she just give in to me--LOL!!!!! The great I am. I know when I am laughing at myself I am on the right track--so I'm taking that as a good sign.

I just want to get through Valentine's Day without applying pressure on her or stressing her out--I think it is best that I forget Monday is Valentine's Day altogether--if she were well we would be in Boston having dinner and going to a show--so why remind her of that--I don't think I should even send a Happy V-Day txt. I sent her the "needy" email saying I got it so now I have to act like I do.

Well I am going to go work on my blog so I will say good night. Thank you--you are someone I would love to go have coffee with and spend the afternoon talking to. You are very wise.

TTYL,
Tammy
If you see yourself in others, then whom can you harm? .........Dalai Lama

Hickoryone
Regular Member


Date Joined Feb 2011
Total Posts : 32
   Posted 2/15/2011 11:04 AM (GMT -6)   
My thoughts on Valentines' Day are alot like my thoughts of Christmas as it exists now; a nice thought initially and now it's turned into a commercial endeavor by the likes of Hallmark and others who profit from these holidays.

I don't require a day pointed out to me on a calendar to tell those I love that I love them nor Christmas to buy them something I know they would like, treat them to a lunch, spend time with them laughing, etc.,

Notice that by Halloweens' end the Christmas materialism begins and is it any wonder people go into "hock" and are completely stressed out.

I tell people I love them after chatting on a phone, as I leave from a visit, in a e-mail, etc., I don't require a man made holiday to proclaim what I feel as truth or send a card someone else wrote; I prefer blank cards when I send them....so I can write in them.

It's difficult to respond on all of these posts which is why I felt giving my number would be more helpful; responses immediate rather than waiting to see if the other responded, etc.,

You sound like me in terms of how you will give things up; this instance a car....I gave away two cars in my life, one was brand new...and went even further with the nonsense by sending my ex a car payment for the next month and money to get a oil change.....oi vey!

Don't know if I am what can be considered "wise"....I just know what I have learned in my own life from my experiences; I don't always learn immediately the lessons.....but I try. Thank you for the compliment.

I am on Central time, just so you know when you call, you I believe are a hour ahead of me.....but you can call me.....I am not free with my number but I think it will help us communicate better than this thread.

My hope is you have a better day......sending a smile and hug....


:-)

Hickoryone
Regular Member


Date Joined Feb 2011
Total Posts : 32
   Posted 2/15/2011 11:09 AM (GMT -6)   
Tammy,

And about Sociopaths.....you aren't one.....a Sociopath wouldn't care how another feels, only what they want and they are ruthless to get what they want with no worry of consequences, etc., I had a neighbor who was a Sociopath so I researched, much to the boredom of it.....sociopathy because I could not wrap my head around how there can be these people walking around. He actually became a complete danger....stalker....and much more.

Nope....you are not a Sociopath...lol

TammyJ
Regular Member


Date Joined Feb 2011
Total Posts : 51
   Posted 2/15/2011 11:10 AM (GMT -6)   
Thank you--I am gathering financial things to go car shopping--I willl talk to you tonight--Yes I think we are very simialr :) TTYL Have a good day. Tammy
If you see yourself in others, then whom can you harm? .........Dalai Lama

TammyJ
Regular Member


Date Joined Feb 2011
Total Posts : 51
   Posted 2/15/2011 11:14 AM (GMT -6)   
****!!!!! thank you--thank God!!!!! I'm not a sociopath--I'm hoping she at some point can stoip feeling obligated--and I don't even know if that is how she feels--me thinking that of her makes it easier for me not to call or txt her--as always I don't know what she thinks or feels b/c she wont talk about it--so I sit here wondering and not knowing how to act--do I txt or not txt. I just don't I can't stand the feeling of think she feels obligated....that makes me physically ill. Got to go--talk to you tonight :) 9ish my time--8ish yours ????
If you see yourself in others, then whom can you harm? .........Dalai Lama

Hickoryone
Regular Member


Date Joined Feb 2011
Total Posts : 32
   Posted 2/15/2011 11:25 AM (GMT -6)   
Sure....8ish sounds good
Talk to you then...good luck on getting a car!
"I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not when I came to die, discover that I had not lived." Thoreau

Hickoryone
Regular Member


Date Joined Feb 2011
Total Posts : 32
   Posted 2/15/2011 1:29 PM (GMT -6)   
Another thing I failed to mention....if my phone sends you to voice mail....some glitch that is happening with it....I will notice it and call you back.....
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