going on...

Two days ago I spoke to a very good friend of mine very long (on the phone). And I figured out that one part of the problem I have when I visit doctors is that I know I will feel very desperate afterwards because they usually don't help me, yet of course I put some hope in the visits.

Knowing that I will feel desperate afterwards makes me reducing the doctor-visits to a minimum. I only go when I really need to, like when I've run out of medication. Pain usually doesn't make me go to doctors anymore, because visiting doctors doesn't change anything about the pain.

Knowing that I will feel desperate afterwards makes now also feel desperate and sad already before I visited the doctor, because I'm so sure about the outcome and I get all kinds of depressive thoughts in my head when I only think about visiting a doctor (another reason to reduce the visits).

I try to tell myself then, that I can have depressive thoughts at any other time, but just not now, that I have to focus on something else, but it doesn't work.

Then yesterday I spoke to another friend (I know her from work, she's really nice, but I don't know her as long) about the same problem. I told her, what I've found out with the friend of mine. She asked me, why I am not angry at the doctors for not finding a solution for me. I don't know the answer to this question, it's just that I'm never angry. I'm always just sad. She also said/wrote that it must seem to the doctors like if I would feel guilty for my pain.

I don't know if I do. I feel guilty very easily. But not really for the pain. I think that it might be my fault, but I don't feel so guilty actually. So it is difficult to answer. She asked me then if I feel embarrassed. Maybe I don't feel embarrassed for the pain so much, but for being me. For all my problems, for my past, for not being able to cope with live properly.

She also said that the doctors could think that I'm a drug-addict, if I appear so guilty and embarrassed (if I understood correctly, I hope I did). That is actually a thing I worry about too, because there is nothing I can really do to prove that my pain is real and that I don't get any positive side-effects (apart from pain-relief of course) from pain-medication.

She, the friend I know from work, also suggested that she would go to the doctor with me and speak with them and explain them some things about me. That is really nice and I appreciate it a lot, but I don't know if this would make me appear even more strange to the doctors.

Anyways, tomorrow, on Monday, I will (try to) call some doctors and ask for appointments. Maybe there is one who understands me better and does all the examinations needed and finds a solutions. I hope. Because I can't live with this problem, so I have to go on, no other choice.

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.)

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.

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!