David Baxter PhD
Late Founder
Day Of Reckoning
The meeting with the psychiatrist and the CPN is at 1.30pm today. I am dosed on Seroquel but unable to sleep.
I?m really nervous.
I have that knotted-tonsil feeling of being sent to the principal?s office. Because of the circumstances of this meeting- i.e the GP forcing them to reschedule the appointment for an earlier date- I can?t help but feel that somehow I am in the wrong and that I will be scolded for it. I can already imagine my CPN?s defence (?She didn?t answer her phone?) and the psychiatrist?s rebuttals of every damn point I raise.
I am also worried they?ll do an inpromptu blood test and pop out a vein or two to check Lithium levels. It?s no fascinating secret that I stopped taking my Lithium a month ago. It wasn?t working, and that grasping-your-sheets nausea is not worth it. I would be bent double over the bed every night after taking it, dry retching and, on occasion, vomiting. There was also the wonderful side effect of making me shake so much I looked like an alcoholic in the dryer.
However, this puts me in a tricky position. If I admit to not taking my Lithium, I am non-compliant and they may not change my medications.
If I don?t admit to it, they could surprise me with a marvellous primed needlepoint and I will be a non-compliant liar.
Which would I rather be?
The Patient Who Is Not Happy with Her Treatment
That?s what I actually am but if you?re a psychiatric patient, hell?s bells will chime the Armageddon before anyone treats your opinion with an iota of respect. So far, since my first contact with the NHS mental health services, I have been dismissed as:
From being forcibly ejected from Canning Crescent after being refered there by the Emergency Reception, to being told to ?just take your pills?, I?m beginning to suspect that, well, gosh darn it, I might be wrong?
?Write out what you want to say?
This is advice I?ve been given many times when attending psychiatric appointments.
The very first time I heeded this, I wrote, in detail, a one month diary of my concerns, namely, mood swings, hallucinations and the odd things people said to me.
After reading it to the doctor in a rather rushed fashion, she regarded me sternly for a moment before saying, ?You?re a very intelligent girl who should stop swearing?. And then she opened the door and led me out of the office.
I know what I want to say at today?s appointment. However, at this point, I can almost anticipate their responses.
1. ?My primary antimanic, Lithium, doesn?t work. I asked to be taken off this medication as it makes me so nauseous that it brings me to my knees. It made me so ill that I had to stop taking it. I would have done this with supervision if I had been able to get an urgent appointment?.
Anticipated response: ?Because you?ve stopped taking it, of course it isn?t working. Keep taking it. Maybe it?s too low in your blood even though every single test has come back with the same result. It takes a while to work. Yes, I know it?s been six months?.
Smashing.
2. ?I don?t want to take Seroquel anymore as it is causing a dangerous amount of weight gain. Whereas I?m none too keen on topping myself, I also don?t want to die of type 1 diabetes.
While I?ve been taking Seroquel, my anxiety has skyrocketed and I still suffer from hallucinations and paranoia. Now, I?m on a fairly high dose (400mg) so I think just maybe it?s not the antipsychotic for me??
Anticipated response: ?All antipsychotics cause weight gain. You can have this or Zyprexa 50 lbs guaranteed?. (Admin note: This is not necessarily true.)
Marvellous.
3. ?I am really worried about the speed and severity of my mood swings. Sometimes, such as last week, I can spend a long time quite high and sometimes I can spend a long time quite low. However, there are many times I am up and down within the space of a day or two. I almost never feel on a level and it?s making it impossible to function. I am also worried that my (extremely addictive) antidepressant might be making this worse?.
Anticipated response: ?If you are having mood swings daily, you must be Borderline even though you only meet one other criteria! THERAPY! THERAPY!?
Why do the mainstream, run-of-the-mill NHS psychiatric profession refuse to acknowledge the existence of ultradian cycling in bipolar disorder? It makes me wonder how many ultradian cycling types have been misdiagnosed as borderline personality disorder sufferers (where frequent mood swings last a few hours or days, at most) and missed out on any useful treatment.
I can understand this problem if a person presents only ultradian cycling, but my guess is that that is quite rare and this person will have most likely experienced depression, hypomania or mania over a period of days, weeks or months as well.
Rapid cycling- rarely recognised
Rapid cycling is officially defined as ?four or more mood episodes in a year?.
When I read that, my brain howls, ?Four in a YEAR?! Four in a week!? It seems quite leisurely to me.
My particular psychiatrist isn?t too keen on rapid cycling, which is obviously detrimental for me, being a rapid-cycler.
The other psychiatrist, Dr. Noel, diagnosed me as also suffering from Borderline Personality Disorder, even though I didn?t meet the required criteria.
Naturally, one of his reasons was that my mood swings sometimes occured within the space of a day.
I am not quite sure how he figured this. I was an undiagnosed, untreated bipolar disorder patient who had recently suffered a devastating bereavement which then knocked her into a period of intense rapid-cycling. Within the space of hours and days, I?d experience eurphoria, irritablity, delusions, depressions, hallucinations- not caused by stress.
That is very important. It isn?t dissociative psychosis. Whereas one big event did undoubtedly impact badly on my mental health (the loss of my dad, and the manner of his death) there were no other triggers for my mood swings.
I am also confused as to why the frequency of my cycles was attributed to BPD as it was on my medical record that I had also experienced long bouts of full blown mania and depression.
Rapid-cycling seems to be a natural progression to me. If you are not treated, you get worse. You break your leg and keep walking on it, it doesn?t heal. You?re diabetic but don?t inject insulin, you get sick. Our minds, as they are, seem to revel in this weakness and decide to play silly buggers and not give you a moment?s peace.
The frequency of my mood swings make it hard for me, rather than the severity. If I had one fully manic, proper c?mon psychotic episode a year, alongside one fantasising about jumping off a bridge episode, I think I could cope slightly better.
The frequency means that I lose interest in things quickly- people, places, pursuits- as I fall from yip-pip-pip hypomanic into depression. My feelings don?t change, but my energy does and ability to think does, in devastating fashion. The frequency messes with my sleep and my episodes are sudden, sometimes severe, I lose jobs, I find myself at one moment revelling in photography and the next too afraid to enter my bedroom as I am convinced there is a giant, small-woman-eating spider crawling along the wall, two foot wide.
And I will say?
4. ?First off, hi there.
Basically, it?s no fun. And I feel like such a **** for complaining but I think I should as, unless I move out of the borough, you people are my support network.
I?m unhappy that I have been switched to another doctor because of my new postcode. I have no idea how you get away with this. It takes time to build a relationship with a doctor. Especially as psychiatric patients. We need to tell you personal and sometimes disturbing stuff. Changing the entire team on the basis of a postcode seems ludricrious.
I?m unhappy that my appointment was made in March and scheduled for June. My jaw nearly shattered when it hit the floor.
I?m unhappy that I am six months into a life-changing diagnosis, serious medications, frightening life style changes and the continuation of my illness. I?ve seen you twice.
I?m unhappy that you- the CPN- I have met once, when you weren?t even my CPN.
I?m pretty ****ed that you keep blaming me for not picking up on the two times you tried to call (one week apart, yeah and two weeks after you cancelled your appointment with me).
I?m unhappy that you didn?t listen to my concerns about medications.
I?m unhappy at being treated rudely and with breathtaking disrespect by the staff here.
I?m unhappy because every time I make an appointment, I receive a letter saying it?s been cancelled and am offered another two months later.
I?m unhappy because there are Junior Psychiatrists out there who don?t have a job while the patients in here can?t get appointments.
I?m unhappy that I was offered no therapy to help me as I made lifestyle changes and adjusted to medications.
I?m unhappy that I tried to relay my anxiety to you and you brushed it off.
I know my mental health is my responsibility. I am doing my part. Please do yours."
Wish me luck.
The meeting with the psychiatrist and the CPN is at 1.30pm today. I am dosed on Seroquel but unable to sleep.
I?m really nervous.
I have that knotted-tonsil feeling of being sent to the principal?s office. Because of the circumstances of this meeting- i.e the GP forcing them to reschedule the appointment for an earlier date- I can?t help but feel that somehow I am in the wrong and that I will be scolded for it. I can already imagine my CPN?s defence (?She didn?t answer her phone?) and the psychiatrist?s rebuttals of every damn point I raise.
I am also worried they?ll do an inpromptu blood test and pop out a vein or two to check Lithium levels. It?s no fascinating secret that I stopped taking my Lithium a month ago. It wasn?t working, and that grasping-your-sheets nausea is not worth it. I would be bent double over the bed every night after taking it, dry retching and, on occasion, vomiting. There was also the wonderful side effect of making me shake so much I looked like an alcoholic in the dryer.
However, this puts me in a tricky position. If I admit to not taking my Lithium, I am non-compliant and they may not change my medications.
If I don?t admit to it, they could surprise me with a marvellous primed needlepoint and I will be a non-compliant liar.
Which would I rather be?
The Patient Who Is Not Happy with Her Treatment
That?s what I actually am but if you?re a psychiatric patient, hell?s bells will chime the Armageddon before anyone treats your opinion with an iota of respect. So far, since my first contact with the NHS mental health services, I have been dismissed as:
Liar, attention-seeker, unstable, non-compliant, workshy (even though I have never claimed benefit), an ?intelligent girl who should stop swearing?, morose, morbid, teenage angster, fantasist, irresponsible, fake, drug-addict, ?exaggerating?.
It took me a grand total of seven years to arrive at the very obvious conculsion of Bipolar I Sufferer. After my diagnosis, I had mistakenly believed that my concerns, worries and wishes would be taken seriously.From being forcibly ejected from Canning Crescent after being refered there by the Emergency Reception, to being told to ?just take your pills?, I?m beginning to suspect that, well, gosh darn it, I might be wrong?
?Write out what you want to say?
This is advice I?ve been given many times when attending psychiatric appointments.
The very first time I heeded this, I wrote, in detail, a one month diary of my concerns, namely, mood swings, hallucinations and the odd things people said to me.
After reading it to the doctor in a rather rushed fashion, she regarded me sternly for a moment before saying, ?You?re a very intelligent girl who should stop swearing?. And then she opened the door and led me out of the office.
I know what I want to say at today?s appointment. However, at this point, I can almost anticipate their responses.
1. ?My primary antimanic, Lithium, doesn?t work. I asked to be taken off this medication as it makes me so nauseous that it brings me to my knees. It made me so ill that I had to stop taking it. I would have done this with supervision if I had been able to get an urgent appointment?.
Anticipated response: ?Because you?ve stopped taking it, of course it isn?t working. Keep taking it. Maybe it?s too low in your blood even though every single test has come back with the same result. It takes a while to work. Yes, I know it?s been six months?.
Smashing.
2. ?I don?t want to take Seroquel anymore as it is causing a dangerous amount of weight gain. Whereas I?m none too keen on topping myself, I also don?t want to die of type 1 diabetes.
While I?ve been taking Seroquel, my anxiety has skyrocketed and I still suffer from hallucinations and paranoia. Now, I?m on a fairly high dose (400mg) so I think just maybe it?s not the antipsychotic for me??
Anticipated response: ?All antipsychotics cause weight gain. You can have this or Zyprexa 50 lbs guaranteed?. (Admin note: This is not necessarily true.)
Marvellous.
3. ?I am really worried about the speed and severity of my mood swings. Sometimes, such as last week, I can spend a long time quite high and sometimes I can spend a long time quite low. However, there are many times I am up and down within the space of a day or two. I almost never feel on a level and it?s making it impossible to function. I am also worried that my (extremely addictive) antidepressant might be making this worse?.
Anticipated response: ?If you are having mood swings daily, you must be Borderline even though you only meet one other criteria! THERAPY! THERAPY!?
Why do the mainstream, run-of-the-mill NHS psychiatric profession refuse to acknowledge the existence of ultradian cycling in bipolar disorder? It makes me wonder how many ultradian cycling types have been misdiagnosed as borderline personality disorder sufferers (where frequent mood swings last a few hours or days, at most) and missed out on any useful treatment.
I can understand this problem if a person presents only ultradian cycling, but my guess is that that is quite rare and this person will have most likely experienced depression, hypomania or mania over a period of days, weeks or months as well.
Rapid cycling- rarely recognised
Rapid cycling is officially defined as ?four or more mood episodes in a year?.
When I read that, my brain howls, ?Four in a YEAR?! Four in a week!? It seems quite leisurely to me.
My particular psychiatrist isn?t too keen on rapid cycling, which is obviously detrimental for me, being a rapid-cycler.
The other psychiatrist, Dr. Noel, diagnosed me as also suffering from Borderline Personality Disorder, even though I didn?t meet the required criteria.
Naturally, one of his reasons was that my mood swings sometimes occured within the space of a day.
I am not quite sure how he figured this. I was an undiagnosed, untreated bipolar disorder patient who had recently suffered a devastating bereavement which then knocked her into a period of intense rapid-cycling. Within the space of hours and days, I?d experience eurphoria, irritablity, delusions, depressions, hallucinations- not caused by stress.
That is very important. It isn?t dissociative psychosis. Whereas one big event did undoubtedly impact badly on my mental health (the loss of my dad, and the manner of his death) there were no other triggers for my mood swings.
I am also confused as to why the frequency of my cycles was attributed to BPD as it was on my medical record that I had also experienced long bouts of full blown mania and depression.
Rapid-cycling seems to be a natural progression to me. If you are not treated, you get worse. You break your leg and keep walking on it, it doesn?t heal. You?re diabetic but don?t inject insulin, you get sick. Our minds, as they are, seem to revel in this weakness and decide to play silly buggers and not give you a moment?s peace.
The frequency of my mood swings make it hard for me, rather than the severity. If I had one fully manic, proper c?mon psychotic episode a year, alongside one fantasising about jumping off a bridge episode, I think I could cope slightly better.
The frequency means that I lose interest in things quickly- people, places, pursuits- as I fall from yip-pip-pip hypomanic into depression. My feelings don?t change, but my energy does and ability to think does, in devastating fashion. The frequency messes with my sleep and my episodes are sudden, sometimes severe, I lose jobs, I find myself at one moment revelling in photography and the next too afraid to enter my bedroom as I am convinced there is a giant, small-woman-eating spider crawling along the wall, two foot wide.
And I will say?
4. ?First off, hi there.
Basically, it?s no fun. And I feel like such a **** for complaining but I think I should as, unless I move out of the borough, you people are my support network.
I?m unhappy that I have been switched to another doctor because of my new postcode. I have no idea how you get away with this. It takes time to build a relationship with a doctor. Especially as psychiatric patients. We need to tell you personal and sometimes disturbing stuff. Changing the entire team on the basis of a postcode seems ludricrious.
I?m unhappy that my appointment was made in March and scheduled for June. My jaw nearly shattered when it hit the floor.
I?m unhappy that I am six months into a life-changing diagnosis, serious medications, frightening life style changes and the continuation of my illness. I?ve seen you twice.
I?m unhappy that you- the CPN- I have met once, when you weren?t even my CPN.
I?m pretty ****ed that you keep blaming me for not picking up on the two times you tried to call (one week apart, yeah and two weeks after you cancelled your appointment with me).
I?m unhappy that you didn?t listen to my concerns about medications.
I?m unhappy at being treated rudely and with breathtaking disrespect by the staff here.
I?m unhappy because every time I make an appointment, I receive a letter saying it?s been cancelled and am offered another two months later.
I?m unhappy because there are Junior Psychiatrists out there who don?t have a job while the patients in here can?t get appointments.
I?m unhappy that I was offered no therapy to help me as I made lifestyle changes and adjusted to medications.
I?m unhappy that I tried to relay my anxiety to you and you brushed it off.
I know my mental health is my responsibility. I am doing my part. Please do yours."
Wish me luck.
