Is life going to get better?

Ever since I have developed memory, and probably even before, I am hoping* that one day I will finally feel better. (*even though the hope fades away more and more because I get in touch with reality more.)

And I think the question all is about is: is this going to happen, is it worth to withstand hard times in your life even if they endure and finally is life worth living?

The last part of the question is of course the most difficult to answer. There are hole books with hundreds of pages about it. And the possible answers are anything but simple...

The other question - for me - is are things going to improve? Of course, if one is truly happy, one doesn't have to hope that things improve. If everything is fine, that's fine. But if you are ill, or suffer from a disorder like anxiety or depression or OCD or psychosomatic pain or something similar (or completely different but another bad thing) or are simply not happy, you maybe hope that you will be able to overcome this one day. So do I. So did I.

I want to explain you.

When I was a child, I was not happy. I had a lot of anxiety and I was easily scared and also a lot of negative things happened (abuse), probably because I was just too stupid to tell anyone (I thought they would know anyways. It didn't came to my mind that someone who doesn't see doesn't know if I don't tell. I didn't get this at all.) There have been moments when I have had hope or felt some kind of happyness, though. I remember a situation, where I was walking up the stairs (I don't know why I have exactly this picture in my head) thinking I was pregnant (I didn't know about biology, or maybe I didn't wanted to know) and I was happy (or had hope or something like that) because I thought this child I would give birth to would understand me. I felt understood by this child (I was like 6 or 7, so a child myself). This kept me living for a long time (not only this situation of course, it was just an example because I remember it so clearly like it was yesterday).

At school I was bullied a lot, because I was very different from the other pupils. But I was in my own world and I didn't value the opinion of the other people in my class, so I guess this made it less painful. Even though sometimes it was physically painful and one thing I hated a lot was when they stared at me or tried to put my trousers of. But I didn't understand a lot of the words they said to me and I didn't even tried to understand. Also for the bullying it came out a few years later that my parents didn't know. I always thought they knew because it was just so natural for me. But I most probably never told them.

Of course, due to this, I didn't liked school, and I didn't liked going home. But I somehow was still able to live. At a certain point I started cutting, but at that point it really helped me. And as I didn't wanted to stop it wasn't a struggle.

In 1994 my father got diabetes type 1 which is a common disease (not as common as diabetes type 2, but still quite common). The problem is, that he can't handle this disease very well and was in coma due to hypoglycemia several times. For several years we had to call the ambulance like once every two weeks or so... My parents fight over this a lot: what my father eats, how his blood-sugar levels are and so on...

I have always been a thin child and I've never enjoyed eating. My weight has always been around or under the 3rd percentile. A few years (about 2) before my higher school diploma I started to sometimes walk home from school or taking the bike to and from school even though I had a long way to go to school (about 15-20 km / 9-12 miles each direction).This was calming me down. The problem was that I also reduced my calorie intake to almost zero (in 2004). I liked to watch my body wasting away. I liked the feeling of almost fainting. I liked the energy bursts I got from diet coke. So I went down to a really live-threatening low weight. Strangely enough I remember this time as a good time. I was too starved to worry.

I was admitted to hospital at that weight. The first days were an up and down (emotionally). I felt alone (even tough I was not more alone than before) and scared. But physically I started to feel better really fast. The first day (or first few days, I don't remember) they only gave me sugar through an i.v.. This increased my energy levels so much. I could walk around the hospital flors (with the i.v. in my arm). This felt great, because before I was admitted, I could barely walk anymore. Then they put a stomach-tube down through my nose. And then something was wrong with my blood so I was put on intensive care. There I got an port to fed me. I don't remember that time very well. My brain was very dizzy and I got lots of medications. After that I got a stomach-tube again because I was "released" into closed psychiatry. The time in psychiatry was very stressful to me and I think that they made so many thinks false. They didn't explain anything to me (maybe they thought it would be clear and everybody would now, but it wasn't and I didn't realize some obvious things) and I haven't had therapy. It was just being locked up, not much more. Maybe I will write a comment / blog entry about that time one day later, it's too much for now.

From this psychiatry I was referred to a psychosomatic unit at a hospital and than from there again to several psychiatrys. It would take to long to tell all this now.

But I gained my weight back. Have already been at a low weight (BMI around 14-16 range) when all this started (or got really serve) and I still was underweight when I finally left psychiatry. However, I have never had a therapy for an eating-disorder. I have had one for the cutting in one of the psychiatrys though. It was no talking-psychotherapy, but a therapy where they told you that you should try to focus on other things.

I don't know if it is due to the fact that I have never "relearned" (or even learned form childhood on) normal eating, I was very confused when I had to decide and eat on my own. I didn't know when and what to eat and when I'm full or hungry. This ended in a overeating (binging would maybe be a too strong word as my binges haven't been so big) - purging circle. This lasted the hole time I spend in university, but I finally got it under control. I'm still underweight, though.

During that time at university I also developed a headache which occured everyday. I went to a lot of doctors and tried a lot of medications but nothings seemed to work also some triptans (medication for migrane). But then I finally found a triptan which helped very well and now I don't have this problem anymore, even though I have headach quite often. I'm also taking a medication to prevent it.

Then since autumn 2010 I have the back/bud-pain I already wrote about. I also have a lot of stress of work and worry a lot, I'm sometimes really depressed have sometimes the strong urge to cut (but don't want to) and miss so many things (sometimes).

So if I look at this history I think that things didn't improve for me so far (of course a lot is missing but this is already sooo long - sorry for that). One trouble was just exchanged against another one. I really wonder if I could be free of trouble of thouse kinds as described abouve - and I doubt that.

I never felt really good/happy. There were always troubles, and I hoped and hoped and hoped they would not happen again. Of course they happened again. And again, and again, and again. And again the day after that. And so forth. And if I finally god rid of something - I can see now form the few backwards - something else occurded which caused other problems. (So at the moment I am hoping that my back/butt-pain magically disappears, but I know that it is very unlikely to happen... magically and anyways... and I wonder what comes next.)


Edit Dec/12th:

I read some stuff I wrote when I was younger. 12/13 to ~22. I already felt really desperate at 12. I remember I wrote about suicide in a journal at age 7/8/9 (don't have it here now, so I didn't read it). But nevertheless, I think the probability to become a happy person if you have never been, decreases with age. The negative things just add up. If it are too many, the positive things don't get the change to add up, because you are not able to experience them (or expierence them as deep) in the first place (because of psychological problems like anxiety or depression).

(Edited angain on December, 16th.)

Acute stress releases chronic stress

I somehow like acute stress (even though to me other things are an acute stressor than for other people, I guess). Because when I'm stressed I don't have time to think about all these thinks that worry me. When I'm stressed I'm in the moment. Not worrying about the future and other stuff going on. This is why I like data-collection. I know exacty what I have to do; yet it is very stressful because I have a lot of things to do at nearly the same time. Today wasn't exactly stressful, because I hadn't had a strait/tight schedule, but it felt even more stressful because I didn't know where to start and what to do at first and when I tried to do one thing it came to my mind that other things would probably be more urgend, so I break off my task and started a new one and so on... I couldn't concentrate on one thing for two minutes... So, I'm looking forward to the next period of acute stress. Then I will worry, but at least I will worry about less things.

Picture

Hi,

I just want to post a picture today. I took this last autumn (I haven't had a DSLR at that time, just a compact camera). I like it because it looks so quite/calm.

Klick on it to enlarge.

(It would have been better if I had taken the picture from a point a bit more one the right sight. (Hope you know what I mean?) But I can't change this now...).

About Suicide

Today I feel almost dead. No, probably this is false, but I feel bad and tired and disconnected from the world. I don't know how to describe... tired without the ability to sleep is probably the only way to explain.

Anyway, recently I have heard a talk about suicide at the faculty where I work. The professor holding the talk said most suicides are done because of little reasons, like there is not enough milk in the fridge anymore and there is no possibility to get some (at that time)*. I have no idea whether this is true or not, but I can somehow understand how little thinks can disturb you - if you are already very emotionally unbalanced/aroused. Of course ppl who attempt to kill themselves cos of "little" reasons might be happy afterwards if they are saved. But something has to be wrong in their lives, that they get disturbed so easily. The professor further mentioned that in his opinion every suicide is irrational, even if a very ill person who has serve pain and will die a painful death in near future anyway kills him/herself. I don't think so. I think suicide is rational if your chance to be happy is to low to carry on with live. For my perspective suicide would be rational in my case. I'm just not brave enough or I may have some irrational hopes or something, I don't know why I am still alive. I have thought about suicide ever since I know that humans are dying. Most of the time I'm thinking about it rationally. Sometimes more emotionally, like getting the urge to do it. But the strange think is, when I feel the worst I don't think about it because then I don't have any capacity in my head to notice that life is finite. Maybe that is the reason why I am still alive. I don't know what to think about that.

*or a friend breaking up. But I think there everybody thinks different whether this is a "little" reason or not. The "milk"-reason might seem more little to the most ppl.

Thank you for reading (sorry for depressing content).

continue

All I can do is continue. Simple continuing. Without any improvement.
This is so tiring. All I can do is keeping my eyes open, not to fall asleep, to keep walking, not to fall down. To keep working, learning, battling against pain. Keep the current status - without any improvement.

I think I'm pretty good at continuing (no matter what). And even though this may keep me alive, it keeps me away from living.

I think I don't have this little lever/signal in my head which tells me when something is enough. So I will carry on... and on. E.G. In 2004 I basically stopped eating until I ended in intensive-care in hospital. Even though it is a bad idea to start to stop eating in the first place, I totally missed the point when to stop or when to visit a doctor and ask for help. E.G. I drove 200km in one day with my bike several times (and I'm not trained at all) just because I didn't get the point when to stop. E.G. I basically didn't sleep for a lots of month (of course I did sleep but just very weak and only a couple of minutes at a time) because I was so scared, something bad would happen. E.G. I went to school for 13 years, every day, no matter what happened. E.G. I went to our neighbors house*, for years, every couple days, no matter what happened.

And now I have this really serve pain, but it doesn't stop me from continuing. I wish I could stop. But changing my live feels like stopping the world from rotating - I can't do that. I wish I could go to a doctor and ask for help, but that is not what I do every day, and thus it takes so much more effort than just continuing (no matter what).

Sometime the only escape from continuing to me seems to be the jump of a building or the jump in front of a train - because it takes only of few seconds. Only a few seconds for which I have to break the continuation.

Thank you for reading (sorry for maybe depressing content).

*house in near neighborhood to be more precise.

Borderline

I feel quite sad and depressed since friday. On friday and on monday it was very bad. Now it is sometimes quite bad and sometimes ok. I don't know what to do with this feelings. I don't know where they come from either, as I'm not depressed about anything special.

Today I talked about my doctor with my best friend from work. She asked me what I feel when I sit in the doctors office. I only could answer her, what I think when I sit there, but the question is interesting so I thought about that. I think, I don't feel so much at that specific moment, as I'm just very stressed about finding the correct words and so on. And I have pretty good avoidance tactics to avoid feeling too much, which in my case is just not saying to much. But what I feel is depression and sadness. And when I leave the doctor and am alone again I usally feel this very much as the stress-level goes down then. After my doctor visits I feel very sad and depressed, sometimes (or more often than just sometimes to the extend that I feel suicidal). I didn't thought at that when my friend was asking me because she was asking me how I feel at the doctors office. There, I think I pretty much avoid feelings by searching for words and by speaking not much. I don't even tell my doctor anymore that I have pain. I already told him, and nothing has changed. She sais, I should complain more, that is my role as a patient.

And yes, I am always thinking, I'm just the patient. I don't have to teach the doctor. I don't have to tell him how sensitivity of pain increases over time, what pain does whith your nervous system, what the diagnoses criteria for certain illnesses are, and so on. So I just shut up. But that seems not to be wished, either.

A problem of mine is, that I have lots of comorbid disorders. I was in treatment and in (psychiatric) hospital for a long time. During my youth I used to cut as stress-relieve and I have scars from that on my body (I still have the urge to do that sometimes but I don't do). I was, due to that, diagnosed with borderline-personality-disorder in the past (after seeing the psychiatrist for like 5-10 minutes). The diagnoses was revised later. But my pain-doctor, even though he never talked about any personal stuff with me and even though he never did any psychological testing putted the borderline-diagnoses in my medical-findings. I don't understand that. I don't want to discuss with him whether I have borderline or not, but he is not even trained to judge on that, he has not done any assessment, and he can not have simply copied it from elsewhere.

My problem is, I go to conferences too, I hear doctors talking too, when they think they are under themselves, and they are so judgemental. You don't need to have any interpreting skills to understand. They say: "Borderline-patients are the worst. They manipulate you whenever they can." or "You never want to treat a Borderline-patients that's really the worst." Things like that. I'm sorry for the Borderline-patients, because of course everybody has reasons to be how he is. And if he is manipulative, I believe, that there is a reason. Of course it makes therapy more complicated. In my case any therapy will be very complicated as well, because I have lots and lots of difficulties, e.g. with talking and finding out what I am feeling and so on but I don't think that I'm manipulative (at all). Nor do I think that I fit the other borderline diagnosis-criteria to an extent that would allow the diagnosis (not at all).

Btw, nearly the same which is true for borderline is also true for Fibromyalgia. It is awful to hear doctors hear talk about Fibromyalgia. They don't seem to be sure that patients with Fibromyalgia actually suffer. Bad theory-of-mind, I can only say.

But that's awful and all that drives my feeling that no one believes me. When I did tell nothing but the truth but without any exaggerating show. My friend from work says I should explain the doctor that this is my personality. That I simply can't give him this show. But I don't know, because saying "Sorry, I'm different, I just don't show pain much on the outside." to me has something... redundant.

I hope you understood something I was writing. I'm so tired.
Thank you for reading and for comments.

Misunderstandings: the scissors-man and the black monster

(Edited to make this easier to understand... I hope.)

I got in kindergarten one year later then most children because I didn't speak much and not to strangers, was shy and a bit delayed. However, it seems that it has not been late enough.

Once (and once was totally enough to scare me for month of kindergarten and elementary school) the kindergarteners said, we should all hide under the table, because a man with very big scissors was coming to cut our tumbs off (at least of those children thumb-sucking). I have no ideas whether this was fun for the other children or not, but for me it was just frightening and I was to afraid to come out again. So I stayed under the table even though all other children were playing again. I noticed that, if I was the only person under the table, the scissors-monster would probably notice me at first (compared to when all children are under the table the change is greater that he picks another child first), but I was still too scared to come out. So I stayed under the table crying (even though I noticed that crying would not be the best thing to but the attention of the monster away from me).

There were also games we had to play at kindergarden and elementary school I did not understand at that age (until many years later). E.G. there was a game called "Who is afraid of the black man?"* For this game all children had to stay at one side of the sport hall or room and as soon as this sentence was shouted by the kindergartener all children had to run to the other end of the sport hall. There was one kid who was chosen to be the "black man" and he or she could catch the other children then, if they were not fast enough running from one side to the other. But I was not getting that point - that it was just another kid who was representing the "black man". I always thought there would, at some time, a black monster appear and catch us all. I didn't get the sense in running to the other end of the hall, aswell. Because in my head, the black monster was big, and it would make much more sense to hide somewhere else if it would enter this room. So, this game frightend me a lot!

As a reaction to me not running to the other end of the room but rather stupidly trying just to disappear the kindergartener used to scream at me "run up" or "run down" depending on the direction. I didn't get that either, because the room was even/planar, so there was no possibility to run up or down, leading to lots of confusing on my side.

I don't know if it is understandable to anyone of you how scary thouse simple words were for me as a child. Is it difficult to understand?

* I'm not racist. That is how that stupid game was called.

No hope, not sad.

Right now, everything is going wrong. Everything I do turns out to be false, everything I touch falls apart.

I know that this sentence sounds depressive, but it's not. Everybody around me has noticed that I have all the bad luck so it is not just my interpretation. But at least I could be sad or depressed about all my bad luck and all the pointless work I'm doing, couldn't I? Or I could feel sad about all the things I miss out on, because I do so much pointless work.

But I don't. I'm stressed and worried about my every day routine so much, that I feel there is no space for being sad. It's just worring, being scared, not knowing what to do, where to be, what to say, where to look at. Worrying about the moment, not about the future, because the worries about the moment are filling my head.

I don't know if this is understandable, but if I spend lots and lots of time on planing an experiment and then I can't do it because of something which is clearly not my fault (there is very damageable equipment involvet in the experiments, and it might not be me who damages it) then I feel just as fine as if everything would have gone well, because I on my side just did what I was usually doing. Of course I see that in the long run this is not good because I need to have results and thinks like this recently happen to happen to me all the time, but I feel not to have the capacity to think about thank now. I can't. It's too much because I worry about so many other things in the very near future (next few hours and days). This is different of course if something unexpected happens during my experiment, even if it is not my fault at all. Because then I don't know how to react. For most cases I have written down a scenario on "how to react if this or that happens" but if it actually happens, I can't remember, because if it is unexpected it means I'm not used to it.

So in general I'm ok with doing pointless work. I'm scared about the moment, so I don't worry about the future (too much).

Another thing is, I don't feel like this life is worth much. I don't feel like it would hurt to give this life up. I would not be too sad. But I am also not happy, I am barely living.

I need time...

... to watch out of the window,
... to swing in my hammock-swing,
... to bus-drive without getting somewhere,
... to walk without getting somewhere,
... to jump stupidly up and down when happy/nervous/whatever,
... to think,
... to dream,
... to be at least a little bit of myself.

But I don't have any.

Can not express my pain.

Hi,

I guess I have a problem. I always think I should go to the hospital or somewhere (I don't know where exactly, a friend from work (the second one in my life!) was telling me that the hospital would be the right place for such cases but I don't know), because of my pain.

I think the problem is that I can't express my pain. I don't show any signs. She also tells me this. She also tells me this in other case, like I don't look scared or I don't look nervous when I really am so scared than I think I might die. That is strange, isn't it? No one has ever before told me this! But I then understand a bit why the doctor finds it difficult to believe me (well not really, because I would believe if someone would come to me and tell me about his pain and not showing any signs. This is not fiction but actually the case and I do believe to ppl!).

So the point I want to say is: I think I should do something really fast. I should go to hospital or somewhere else (I also have blood in my stool, but for a very long time now so I'll probably not die from that - and the pain I also have already for more than 2 years. I think the hospital does not treat chronic diseases even though I'm not sure.)

But for work... I have so much work. It is just so very, very much. And there is no end. I can not see the end coming. And then I make mistakes, and I have to correct for these mistakes. And currently my experiment is not working as it should. So I am not sure if I should just go to the hospital, because the experiments I am doing are worth nothing anyways or if I should try and do the experiments and if I'm really, really lucky they work and I get results (it depends on technical stuff which I can't influence). I really need those results, but it is questionable if I get them, even if I work on them. I also really need a solution for my pain, but for that it is even more questionable if I get it, as I did not get any solution for the last 2 years.

I hope you understand what I am trying to say? The friend from work told me, that most ppl think that if you are able to go to work the pain can't be that bad. I told her that this is not always the case and I think she agreed. Do you agree too? I mean, this is really not always the case!

When I can do one thing then it is carry on under what circumstances ever. When I went to school and made the Higher School Certificate, I was really stressed, and I lost a lot of weight because I stopped eating (I only drank milk for the last 4 month of school). But I didn't question the idea of stopping school to go in a hospital or something like that. (Then I was put in hospital in intensive-care 4 days after I wrote my Higher School Certifiate.)

Now I feel even worse then back these days. But I am told that no one can see. So I don't know how to tell. My doctor does not believe me all my pain. How can I get help now?

Please excuse my errors. I am very tired, because I can't sleep due to pain.

Thank you for reading! Thank you for comments!

EDIT at November, 10th, 2012:

I want to show you a picture of my back/butt. I'm sorry I didn't get all onto it (the left side is missing) because I made it by myself. The lower half I cutted of because I don't want to show my butt. Those are the marks form using the hot-water-bottle when ever I can, because it is pain-relieve. It is damaging, but I can't stop, because it just huts so much (the back/butt-pain (it's more in the butt than in the back)).

Are you adjudging people?

Are you adjudging other ppl? As far as I am aware I'm not. I want to find out whether this is normal or not.  Is this normal to "normal / nt" ppl? Is this normal to aspergers-ppl?

(Quick side note: in which cases do I have to put a "s" behind asperger and in which not?)

 I also want to find out whether I am actually not adjudging the person. Maybe my understanding of "adjudging" is false.

For a really long time I did not get into any trouble, because my opinion was not asked. E. G. at school nobody would ask me something about someone else, because I was totally excluded and noone would talk to me just about me (while hitting my head or trying to pull my pants of or something like that). (Of course this was another kind of trouble. But no trouble caused by me and my opinion about something.) I don't know whether it is strange or not, that I never felt any anger against the ppl doing this. I just didn't understand what was going on at all. Of course I felt bad, through.

Then now at work I am sometimes ask if I think someone is good at this or that. If I don't think he/she is good at that, I say "No, I don't think so." and sometimes after a while I realize that it would have been better not to say that. Because it puts the person in a bad position, and I don't and this, because I did not say the person is bad, I just said that I think he/she is not good (equals bad) at a certain task. Do you understand? There is clearly a difference between those two, isn't it?

Also for my medical doctor. I quite often think that he must be quite uninformed. I did not tell him that so far, do you think I should? It takes some effort for me not to tell him and I often think I should so that he can change, but then, on the other hand, I have bad experience with telling doctors that they are wrong. And I have speach-problems (with him especially), so I would probably not come much further than telling that he is uninformed.

So, do you think I'm adjuding? Yes, I do think my medical doctor is uninformed (I do not change by the way, because it is so much effort to explain the hole story from the beginning... I think I should take this effort!), and I do think that some ppl are better at certain tasks than others. I am bad at very much tasks. But I don't hate/dislike (nor like of course!!) any person, even though some persons have done things to be which are adjudged by the society (things not described here). But it is possible that my "hate"-word and the societies "hate"-word are different? This is all strange!

Thank you for reading! I would be happy about comments!

Bus driving

When I was studying my hobby was bus driving.
Not as a bus-driver, but as a passanger.

The place I liked most was the place right behind the bus driver, because there I could not see any other passangers and the bus driver could not see me through his mirror so I didn't feel watched.
So I could put my knees very comproftable at the glas-front between me and the bus-driver and watch out of the window. As a student I owned a card with which I could use all the buses in a certain (big) area for free.

I used to drive with the bus to the cities nearby, all the route through the city and back. And then all the thing again. Sometime several times a day. I also learned during sitting in the bus, but obviously I prefered just sitting there and enjoying the view.

Before that time, when I went to school I had to take the school-bus for two-hours every day (one hour every direction which I liked a lot). For the last year of school I also had the opportunity to use it much more because we had a lot of free lesson which I used to drive around the city with the bus.

But now its over. I have moved due to work. I don't know the busses here and I don't have the money for them. As far as I know here there are not as many busses as in the city were I studied. And other public transportation is just not the same. I don't like the train or the tram / cable car, because it doesn't swing as much. I wish I would be in the city where I studied again.

I am also sometimes thinking about changing my job in those of a bus driver. I have not found out yet why I'm not doing it. I guess it is because I want to learn about the world and I want to understand something quite badly, but the thing is I don't see this happening in my current job. And I miss bus driving. I would not be looking forward to learn how to drive one, though. I guess I bus-driver should not dream and that is what I want and miss?

Thank you for reading!

My life is: Cube (the film)

Do you know the film Cube ?

It is about ppl  who awake insight of a gigantic cube and have no idea how to get out. They find out that the different rooms of the cube are moving around and that in some of the rooms are traps which will kill them. So they have to find a system which tells them in which room there is a trap and in which isn't. But the systems they work out prove to be wrong.

The film is also about my life. I am in a gigantic world / society, I don't know how and why I got inside here, aswell and I don't understand the rules according to which it works. And there are traps everywhere. If you / I got around one, then there is just the next waiting in another room. It is impossible (for me) to work out a system to detect the traps before.

Cube was the first and so far the only film which I have seen and completly understood (I am speaking about the first film of the series they made. I have not seen the other two.). Because the philosophy behind it seems just so natural for me, even though the film is very metaphorical. The characters are also easy to seperate from each other, and the speach is easy to understand.

Thank you for reading!

Problems with medical doctor: don't know how to speak/communicate with him

Hi,

I tried to make this post more readable. Hope this helps:

right now (that means for the last few month) I am having big problems with my medical doctor.
To explain this I have to explain first that I have very bad bud / hip / low bag pain. So this means, it hurts very much. It distracts me from everything. I can't concentrate on my work and I basically can't do anything in my free-time due to that pain because I just want to sit on a hot-water-bottle all the time because this decreases the pain.

The pain started in autumn 2010.

Background-Info which maybe is not necessary:

My doctor (another one) told me that it was just psycological, because I had a lot of stress. And I believed him, because I had a lot of stress.
However, I found out later, that I have lyme-disease (IgM and IgG positiv in a lot of tests!) (and other bacterial ilnesses which can in some cases cause joint pain, like yersinia). I know that there is a big debate about whether chronic lyme-disease exists or does not exit. For me, I am really sure that chronic lyme-disease does exist (in some cases). There have been studies which have proven that. Of course nobody knows how many people have chronic lyme disease but that doesn't matter.
And for my specific case it is as sure as it can be that I have chronic lyme disease. Of course there is some possibily for false positiv tests left, but that's always the case. And of course it is possible that my pain doesn't come from this or not only from this but has another reason.
So, I'm not saying it's totally certain, but it is as certain as it can be.
But my doctor, who is a specialist in pain, does not seem to understand. First he denied that it is possible (I'm not saying anything further) that my pain comes from lymes-diseas. Then I visited a specialist in lyme-disease who confimed that I have lyme-disease (he and another specialist in lyme-disease have confimend this several times now) and he seems (or seemed) to believe me now.
Or he seemed to acceped that it is possible that I do have pain due to lyme-disease.

End of Background-Info.

But I'm sorry, that is not what I want to tell you... It's difficult. Because the point is not that it is possible that I most possibly have pain due to lyme-disease (the chance is really high) but the point is that I actually do have very strong pain and that I want some treatment. But I don't get!

Or well, I do get SOME treatment (pain-killers from the doctor who is specialist in pain and antibiotics from the other doc occationally). But it doesn't help me enough. It is still so bad, I can't express. And the part of the last sentence is the point. I can't express. I don't know what to say. I don't know!! I am telling my doctor that I have pain and that it is strong! What else should I tell him? I do not know. Recently I have even stoped to tell him that I have pain, because I think he would already know if he believed me. I don't know if he does believe me because he sometimes pointed out that I don't have a prolapse and that there is a difference (?? don't know how to say) between the objective findings and my pain. So (when I don't say anything when coming to the appointment) he just asks me some stupid question about my work (because I work in research in a related field) and I give a stupid answer and thats all and than I feel really bad because I had the hope that he would help me.

You understand me?


There are always long brakes off silence when I visit him because I have no ideas what to say. I already said that I have pain, and he already said that there is nothing more to do for me (no more medication at least). Because he sais he doesn't want to give me more of my pain-killers and he sais there isn't an other one. The thing is that I know he is false. There are of course lots of other ones, I'm not that stupid. But from previous contact with other ppl and especially doctor I have figured out that it is a very bad ideas to tell them that you think that you think you know better than them. Of course I do not know if other pain-killer would work for me, I just know that they exist! But that is for sure! Maybe he knows and is just lying to me.

One time I was at he specialist for lyme-disease and he said he received a letter from my pain-doctor. The copied that letter for me. In that letter the pain-docter claimed that there is no good doctor-patient relation-ship. Well, I'm not the one who is lying. I'm not the one who is hiding information. I'm just the one who has learned that it is better not to tell the ppl who are hiding information what they are doing.

Why doesn't he just take it as it is?

Thank you for reading!

Hi

Hi,
I decided to start a blog as a diary (I have copied this idea from another blog). Because I have a lot of thought in my head which I can't get out. This is very frustrating. I tried to make a YouTube-Video but that just didn't work, so now I'm trying this way.
I will be happy about comments and suggestions! Otherwise I could just keep a personal offline-diary. But I'm interested in the opinion of other people. And I feel that I have to tell a lot, I just don't know where to start and how to tell.
Thank you for reading!