Breaking

They didn't have any real answers for me at the hospital but they did give me some meds for some relief (at least for a little while) and I am hoping that this new doctor at the clinic will be something resembling a human being... I somehow doubt it (I have only met one that seems to be of the human persuasion so far) but hope is what it is supposed to be about I guess.

I was doing the shaking/tremor/seizure type thing all the way to the hospital and all during the waiting room wait. There were kids sitting right across from us and most of the others in there just openly stared at me like I was a complete freak or something so I tried to keep it under control as much as I could... Mostly for the children's sake.

They were so full up I ended up in a bed in the hallway and my back graduated to full-blown actual spasms where the entire low back would seize up for what seemed like forever before letting up for 30 seconds and then starting the whole dreaded thing over again. Apparently I looked pitiful enough that the doctor seemed to actually care a tiny bit. Reading back on this it all sounds so jaded but man, with my experiences the past five years I have a lot of trouble not feeling a great deal of animosity towards any and all doctors.

It is probably not a secret but I have really lost most all hope for any of this to get better at all. I have tried everything anyone can think of and the only thing that helps (meds) is the one thing that doc's mostly refuse to help with. I have been to every doctor I am able to see with my current situation and have been crying out for help (mostly figuratively but every once in a while literally) to every medical professional I see and it usually gets me absolutely nowhere. I used to think I was approaching a breaking point with this but I believe I have actually passed it by now. Sheer stubbornness is the only thing keeping me going on and still trying. My life used to have some form of dignity and some semblance of functionality. That is no more. Everything has become a study in misery and pain. It's a hell of a way to live.

Most nights I am kept awake by the pain and I have nothing left to do but lay there moving from one position to the next over and over trying to find a way to escape the agony that is now defining me. This leaves me a lot of time to think and more and more it seems to be bleak thoughts that creep in and seem to take hold and not let go. I have always been the type of person to make a distinction in my head between the less than desirable things in my life which could be changed and those which could not. If it could be changed and it was a desirable change, I would change it. If it could not be helped, then I would do my best to simply deal with it and find a way to just let it be and live with it the best I could.

This worked for me for a very long time but I have now come upon something which I cannot change and cannot escape. Something which the only people who could help, refuse to. Usually the only thing left for me at this point would be to find a way to live with this or simply forget about it altogether. But this, this is something I have tried to ignore as long as I could but pain at this level simply cannot be ignored. Living with it has become next to impossible. For a long time I felt that I was simply weak for not being about to "suck it up" and "deal with it". To a certain extent I still feel this way, that I am just not man enough to face a future which has such a bleak outlook. Five years is a long time and it appalls me to think of an indefinite future like this. Hell, even five more years of this seems so intolerable it's almost fantastic.

My kids are always disappointed in me (or rather, the lack of me that is left). My family, which I used to be able to support, are suffering from the effects of my situation and inability to perform basic life functions. I have never been one to enjoy doing nothing for even short periods of time but I have been brought to a point where I do not have much to give. I miss life and all the miraculous little things that accompany it. I miss me. I miss my family and friends. I miss all the small things that give it all meaning.

Here is the thing that really kills me though; there are so many people that have it worse than I do. I have seen it, witnessed it and even have participated in peoples lives who had things so much worse than I do. I think this is where the feelings about being able to "suck it up", etc. come in. The only reasoning I can come up with is that most of these people (from my personal experience anyway) KNEW what the score was. That something was going to give eventually and usually very soon. If this were the case, maybe I would be able to accept it. But to know that this is seemingly going to go on and on and on... It is very hard to come to terms with. When bending over for a few minutes sends me into agony for hours and hours... I don't know, I just don't know how to deal with that. Especially when any other physical activity is close to being just as bad. So for all the people who have said "well, then don't DO that," they just have no idea.

I would despise this letter as a pity-party or self-indulgent whining but I am just so tired of it all that I have reached a rather scary point of ambivalence pertaining to the whole mess. Ambivalence itself can be a very dangerous thing; once you have lost any fear of, well, anything; it can lead to very bad, very bleak places. I have been to a place like this before but it was a wholly mental experience and once I was able to find a way to come to terms with the unfairness of life and death (as in the deaths of loved ones) I was able to get past the malaise. I don't know what to do when there is a very physical, unrelenting cause for the problem. One that I have absolutely no control over. What am I supposed to do with that? The only thing I can find to do about it is to keep on trying, which is what I am fighting to do on a daily basis.

The problem seems to be that even though I have kept on trying, I am losing. Every time I have a hope that I may be able to get help, I have those hopes crushed. So much so that it is not just expected at this point but, at least in my mind, seems to always be a certainty. So far, that certainty has not been dis-proven.

Skrape

Skrape,

You were able to put your thoughts into words in a way that profoundly affected me.... I read and reread your post a few times - and can see myself in most of what you wrote.... which is why I think it's impacted me on a very deep level.

There was nothing about your words that I viewed as "self indulgent" or that it was a "pity party".... it came across as an extremely honest attempt to say that you are literally at the end of your rope, with your situation... Unfortunately, I have been there on both levels (from a mental perspective and physically, too).

I do remember you and I know I've posted to you before; that being said, forgive me for not remembering your latest issue.... I will try to look back through past posts. But why are the doctors refusing you the meds that work? Regardless of the answer to that.... I absolutely know what's that like... when there is "something" that works, yet you can't get it for whatever reason. I have one thing that does work for me (and I literally mean it's the only thing (aside from IV) that even touches my pain), and my insurance won't cover it - and we don't have $3500/monthly (if not more) to cover it.

I wish I had something to say to you that would help you. I really do. I CAN tell you that most of here can find themselves in what you wrote - and that you probably made many here feel a lot less alone. I can tell you that - just by reading your post - you are by no means weak.... your strength is shown by just how hard you are fighting to help yourself.

All of this is HUGELY unfair... and I know what it's like to have a bit of hope and have it crushed. I've been there, and - in many ways - am still there. All I can say is that you have to find "something"... whatever it is for you, even if it's sheer stubborness... to keep fighting another day. I try not to even look past tomorrow, because it's too overwhelming. Mentally, I keep myself focused only on making it through each day.

I wish I could do more for you.... and I absolutely pray that you are able to find something that helps you, anything at all, to feel better.

--Tina

Wow,

This is one of the most deep reaching and touching threads I have read in a very long time. There was a time I felt exactly like the pain descibed here. I still have days I feel that way, but there are better days now. I still have such deep wounds from the pain and depression that they bubble up when I least expect them.

I have never thought about it as: please let it be me to spare my loved one the pain...but that is so profound. I am glad now that it is me and that my beloved daughter is pain free. I will do better with my attitude now!

Often there are other "people" who inflict emotional pain on us too and I got really bogged down in my feelings about that a few years ago. It was honestly before my horrible chronic pain became so severe and I look back now with different eyes...however...I reached out for help (which I used to think was for basket cases) but I was a basket case at that time and didn't want to admit it. After several sessions, he asked me what made me so special...basically, what made me think this person/people were just doing these things to me and not others. I expained that he/they weren't just doing to to me and he said...exactly...the problem is not with you, it is with the person/people who are using their power to inflict pain.

Somehow it changed the way I felt about things....what made me so special? They had done this over and over and I had never realized what impact it had on others until it happened to me. I made it my goal in life to never inflict pain on others in any way that I can reasonably prevent. Your thread has renewed that in me and I will again do better in my relations with other people.

The only honest thing I can say at this point is that you are not a whining person, you are a person in pain. It changes how we see everything and how we feel about everything....somehow it defines us and we cannot see our way out at times, but there will be a way out...it will come when the right Dr comes your way or when some research you have done turns out to be the relevation. There will be a better time.

I no longer believe time heals all wounds...I will never get better in some ways, my medical conditions are not the kind that heal, but I am better, much better today than I was three years ago when I was in the depths of despair, the most insane pain that I have ever even imagined, and when I felt my life was over.