Hello everyone, the longer I go on with this problem & pain the more guilty I feel with my family & friends. I can not be the person I used to be & am having a terrable time dealing with it. I no longer feel dependable, nor do I feel I can contibute much. I have cut back majorly with work, so financially I am not a big help. My husband starts radiation this week & we expect he is going to be tired, I can not do a quarter of what I use to. My kids don't get near as much of me as they used to. I don't have the energy to deal with things anymore. All I feel is guilt. I definantly am not gettting better, how can I make the doctors understand? They are taking forever to do anything about this infalmmation & pain. When it comes to the rest of my family & friends they just don't get it. I feel like screaming when I can't keep my word about helping one of my sisters, or hearing someone complain about the work they have to do, like painting or mopping ect... I wish, really wish I could do it all again. My husband is so angry at it all, at times I feel like he really is angry at me. Although he says he is not. The word frustation don't even descibe how I feel right now. I feel isolated & tired of it. What does it feel like to wake up with out pain? To have a day where you can do anything you want? I use to do it all, I love to help others & now I can't even help myself. So how do you deal with all these feelings? How do you make others understand? I am even afraid of making new friends, because who I am now is not the real me, I am moody & not the joking love to laugh person I use to be. I feel myself with drawling from others because of this & I tell myself don't allow this to happen, do not allow this to take over your life! How do you do that? Sammy
Well one ting that I do is go to counseling because I just get to depressed. It helps me. It is expensie now because I do not have coverage for it at this time.
The counselor I see is a licenced clinical social worker and she helps me to think and act differently.
Right now I am working on some family things that are really hard and it feels like doing it different is just as darn upsetting and emotionaly painful as doing it the dysfunctional way.
I feel myself wanting to isolate more and more, just like you, I don't want to commit to things because I never know how I will feel. It is just easier to say NO than to have to cancel something later. It SUCKS
Somewhere ther has to be a light at the end of the dam tunnel.
I know that I only have control over how I act and react and right now I am even having a hard time with that!!! It is probably a good thing that I live alone because I got way to much going on!!
Hang in there!!! I can hold your hand if you will hold mine....through cyber space of course. Heheheheeheee we can be Pissy together and we can work through all this......Pissy Chrissy
My family is really good about it all. My poor husband has neck and lower back stuff (and chronic eczema, acid reflux...) so he truly gets what misery is. He is almost 57 and had nothing wrong with him until 2 yrs ago. Then the proverbial $%^&* started hitting the fan. We kind of nurse ourselves thru stuff. But HERE is where I really relate:
I have a group of 10 ladies that I met when I was divorced and not yet remarried. I was single from 1998-2002. As nice as these ladies are, I dont think they get my stuff and I think they think I am a complainer. I have learned to not say anything anymore because I think they are sick of hearing it. Plus, without going into detail, a few of them have have TRAGIC TRAGIC things happen to them (not so much health but life stuff), so my stuff sounds really trivial to them. They all know I have had alot of surgeries and I think they are just sensitized to the fact that I am the one in the group that has surgeries and health crap. I dont hang out one on one with any of them. It always group parties for our birthdays or other social stuff (much of where I have to leave early from pain).We all support one another (for the most part), but I dont feel comfortable enough to talk about it much anymore with any of them in a group setting. Once in awhile, one of them will call me to see how I am doing. Then I open up. They all kind of know if I dont attend something, it mostly because I am in too much pain to sit thru a night of stuff. Next Sat. I have another party I should go to. If I use my brains, I will only stay for about half of the thing. Otherwise I will pay for days afterwards (from sitting at table for hours while everyone gabs and laughs). Its good for my soul but bad for my body. My BEST friends I am sure do not judge me, though. But of course, most of them live in other states, so I dont have the luxury of them being close. These are friends from when I was little.
Thanks all, I am just going through this tired of it all phase, this is just so very hard for me. I was the one who did everything, & I mean everything (family get togethers, holiday dinners,all the work around the house, helped everyone else out ect..). I wish now I did not do so much. The more you do the more expected of you. As for my family, sisters & in laws (we have big families) some understand & some just look at me like it is all in my head, I have learned to ignore them. The family members that I was aways there for totally turned their backs on me. That was a huge slap in the face & it hurt. But hey that is people, but my family suffers from the family ignoring me to. I never take advantage of anyone so I don't get it. I am the mothering type, & always there for others. Pretty much now I am alone, at least that is how I feel. I tell myself just except it, & don't let it change the person you are, I am not so angry anymore. People are people. I cannot just get up & go anymore, I can't drive @ times, can't wear the seatbelt & can't lift my arm. I went off myself last week to spend the night at my sisters & got stuck out there (way out in the country), woke up in major pain , could not drive, had to get ride home. Really brought the reality of the situation to life, I realized I am limited at this time & can't take chances otherwise I disrupt everyones life.
I do not understand these doctors, they lecture about taking pain meds, but don't do much about the pain & inflammation. they talk about it like you may have to start therapy, or this or that, but they don't act on it. Lets do this first & so on... mean while my life is a mess. I am point blank telling the doc. next monday that I want something done, at least try. My gosh takes forever to get an appointment & nothing is ever done. Let me tell you with out this board I would be in counseling. No doubt about it. These meds. make me moody & tired & I can't wait to get off them, so I get tired of people & doctors acting like I am going to become an addict. I swear doctors do not listen when you are talking. My family has no choice but to except this is the way it is for now, I will have to learn to deal with the guilt. when your life changes so drastically it is hard to deal with. I guess with my husband starting radiation tomm. I am panicing abit. Bad enough with one of us out of commision. I have find ways of dealing with this alittle better. At least when I am on this board I realize I am not alone. Thanks everyone. Sammy
Excuse me for having a terrible memory here. Did you ever go to the Dr. that the schmucky neurologist told you to see? (I may have that messed up). I am talking about the dr. that told really scared you that time when he said stuff about what he thought the problem was.
Skz, well lets see I have been to a few so not sure which one that would be, had a couple say some scary stuff, had one mention fibro. which I highly doudt I have, that scared my husband. Then had another who talked about auto ammune desease. Now the latest (rehab. doc) has not said anything about either. Had hope for him, he did the EMG & right away took note of the pain. Of course now last visit to him left me with the impression he is not the most patient of doctors, none of them have had their crap together, so far after waiting forever to get in none of my records have been forwarded, you would think they know you have the appointment & would note before you arrive that your test results & records are not there. I know doctors are not god & have already been told I am going to be difficult to diaganos & treat but enough is enough. No attempts have been made outside of meds to help this problem, went to pt late spring, sent by old doctor, the pt stopped therapy because I was not getting better & he could not figure out why I was staying so inflammed. Now I am not even sure he was treating the area that needed to be treated. All I know is I am not getting better, I am getting worse, can't hardly fell the ice packs @ times. These meds are just a band aide that are giving all kind of nice side effects, & having more symptoms,almost afraid to tell the doctors because they kind of look at you like your from outer space @ times. I have pieced things together such as when I am near my menstrual cycle the hip & leg bother me, so I am assuming it is do to more inflammation due to water retention. Like I need anymore of that. When that time of the month hits everything is ten times worse. I think I will welcome menapause @ this point. This doc asked me where did I think it was coming from the neck or scapula area, heck how do I know it all hurts, even pt said it was all inflamed. Every doctor has had their own opinion on where the problem is orginating from, so how the heck can I say. I have asked myself is it just me or is it the doctors? ct scan today, appointment with rehab. doc on monday, so I am getting prepared to speak up & let him know I want something started here. Going to be honest about the impact this is having on my life here, husband starts radiation today, so you watch this doc. will say I am having anxiety. Which I don't doudt to a degree, but has nothing to do with the real problem. Wish me luck, Sammy