I was asked by a member of Sane's research team to share part of my story and provide a link to my blog. Harry G is my pseudonym it is not my real name. I have Bipolar disorder and although 42 years old I was only diagnosed two years ago. Acceptance of diagnosis and obtaining treatment has been an uphill struggle but I am getting there. I share with you part of my story that describes the difficulties many of us encounter in overcoming stigma, misunderstanding , and sometimes lack of humanity in obtaining proper treatment especially when in crisis. The following is not a self indulgent whinge but a description of a moment of great difficulty. By sharing it I hope it may light a spark in someone to do even a little in campaigning for better care of those experiencing mental difficulty.
my moods were fluctuating violently and I experienced my first major depressive episode in over a year. It was the last thing I was expecting. Previous recent episodes were characterized by hypomania verging on mania, and mixed state. A crisis team consisting of a comedy duo and discovery that my Lithium blood levels had not increased whatever despite a 200mg increase in dose, left me feeling desperate wondering how the hell I was going to get hold of the reigns of the increasingly wild horse that is my bipolar disorder. All my hopes were hanging on my psychiatric nurse (who will be referred to as CMHN).
Depression lingered on and off with short sharp episodes of anxiety. We had sent our daughter to her grandmother's for a few days, until the crisis was over. I had bouts of irrational shouting triggered by the stupidest things and directed mainly at mental health services for screwing up, or directly at my bipolar disorder for being a son of a bitch. I had a lengthy and somewhat cathartic rant at God. I had seen someone else do this in the past, and I wanted answers and just a little help if that wasn't too bloody much to ask for. In retrospect if ever there was an answer it must have been along the lines of...
"Well ok but you didn't have to bloody shout!"
I was using the recovery fellowship now like never before. Their support was outstanding. At a meeting I really did not feel too good, very hopeless, very withdrawn, I didn't want to be seen depressed. I loitered outside and someone spoke with me gently all about their own depression. I decided to come in and got so much love and support. I think people noticed that I was really not my usual semi-charismatic self. Being with such genuinely supportive people did not remove my depression but it made me feel a hell of a lot less alone and that maybe the darkness was not a brick wall but just a curve in the tunnel. I was using phone therapy, ie talking to other recovery people on the phone, not just my sponsor. I had to avoid two things now: suicidal thought and the desire for a drink. Neither materialized, no doubt as a result of these precautions. My friends pulled me through those 24 hours. I just had to make it to Wednesday morning to attend my emergency booked appointment with the CMHN.
I had slept very little by morning, despite a sleeping tablet and a Pregabalin that has meant to have a sedating effect and level mood further, stop the rapid cycling and dreaded mixed states. I was generally pissed off with the mental health services as well as feeling extremely anxious and hopeless. But knew I could rely on my CMHN. I felt he always listened, and appeared to know his stuff. Surely he would understand the severity of my symptoms and rectify the situation. He had done before. I trusted him. Unfortunately he had been on leave, then on sick leave immediately following that. This had happened before. I had not been dismayed by this because often he seemed the only contact point of the mental health system I could trust. With bipolar disorder and history of alcoholism you really do need a professional you can trust.
When I arrived for the appointment things were odd from the word go. The CMHN was not his usual friendly self , he looked pissed off. I assumed he was as frustrated as I was with the care I was so obviously not receiving. I was very wrong. I showed him the Lithium results. The bloods taken three weeks after the dose increase, and my discovery that they had not changed upward as predicted some weeks after that. I was extremely anxious, feeling scared as hell my treatment plan was running out of control and wanted my symptoms to stop. Discussions with my union rep and my employer were drawing to a successful conclusion. I wanted to get back to work and this seemed distinctly possible and soon. I needed to be well. I was positive staying at home on sickness benefit was contributing negatively to my illness. I needed to be well and for that I needed my medication regime, monitoring and symptom control to be organized. I felt like I was flying on a 747 piloted by boy scouts. Unnerving is an understatement.
His answer to this dilemma? "Oh well I 'spose its just a waiting game"
Remember, I was uncharacteristically suicidal less than 24 hours before. I started a rant, was no-one listening to me? His incredulity now leached out.
"Did you tell your wife before you went suicidal?"
I was so taken aback I couldn't remember.What was he suggesting? that I was attention seeking?
"you're focusing too much on your illness"
What? I didn't ask to be symptomatic! If anything I needed to convince people I was well enough to work. But it just was not happening right now. My symptoms were now highly unpredictable, increasing in severity and changing in character. I was scared as hell about how they would manifest and just how far they would go. I was desperately worried about loosing control, momentarily I already had. Loss of control could mean death by suicide or as a result of uncontrolled drinking. I had a wife and child to consider into the bargain. My daughter had been sent to a place of safety because of my symptoms, my wife was on the edge. This guy was coming out with all kinds of patronizing BS I just did not have time to hear right now. I asked,
"what , you're suggesting its psycho-somatic?"
"no, just..like if someone has a broken leg, they focus on it , it hurts more"
"I would say that's psycho-somatic, and you say that's not what you're saying?"
I was wondering if he had ever had a broken leg, and was almost certain he never looked after anyone in such a condition. I have, in their hundreds. I really don't think the analogy served my situation well. Then he got nasty.
"When you went for a swim in the sea that was out of character"
Where was he going? I had also sent various emails to colleges, employers, giving more or less a short CV. But I also let them in on my conditions of bipolar and recovering from alcoholism.I'd told him of this previously.Anyone with either condition might understand my rationale. Book early for disappointment rather than find it further down the road of apparent success. He dug his nails in deep here, and I felt like I was being interrogated.
"Why tell them that? do you expect them to look after you or something? When I apply for something I just request information first."
He may well have been right. But to be discussing the finer points of job / study application , well outside of his remit, to a patient in crisis, who was unusually suicidal with no reason for being so less than 24 hours previous beggars belief. I would describe that kind of behavior as at least incompetent and potentially fatally dangerous. One might almost be tempted to commit the final act just to screw his career and keep the public safe. But he really isn't that important.
I had a whole host of important questions however, regarding my current emergency condition and the baffling state of affairs concerning medication. My life was falling apart, I doubted my marriage would pull through and family members who weren't baffled and deeply concerned were getting extremely pissed off with me. I had been ranting inappropriately to one concerning a car repair. My in laws were falling into two camps consisting of Leave Him - Don't Leave Him Yet the yet consisting of hours. If I was attention seeking this really was not the kind of attention I sought. I wanted a resolution to my desperate situation, not an inquisition. He eventually provided an open door to escape the sadism.
"If you've just come here to rant and not listen can you see any reason why you should stay here?"
There is no way this CMHN is going to listen to me. I am Royally screwed.
and I left.
Feeling completely hopeless.
The health service itself was unwilling to help me. Short of signing up for the nearest Scientology branch I really couldn't see any way out. I felt like a shipwreck survivor watching a rescue vessel glide past and into the sunset. I thought there was no rescue now and that under my own power I would surely sink.
Thank God, the recovery fellowship and a cantankerous general practitioner...
I was wrong.
I arrived home feeling lost. Lay down for a while then decided I had to fight back. There was no alternative. I had to muster all of my resources despite the anxiety and depression. On the "emergency" card , left by the crisis team dynamic duo was a phone number for an advocacy service. I phoned and told them of my plight.
"Yes, we can help you!"
They would arrange a meeting between the CMHN and myself with an advocate representing me. They contacted him and informed me he requested I arrange the meeting via phoning him directly. At first I said ok. But phoned back the advocacy service.
"Tell him No! I want all communication to go through the advocacy service. He needs to know I am serious. I can't afford to muck about with my care. I have two potentially fatal disorders to contend with and anyway I don't trust him."
"No problem, we'll let him know"
I've still heard nothing since.
I used the other resource to hand. My recovery fellowship. Someone suggested I simply make an appointment with my GP. Especially since the government is pushing financial and decision making power their way. This I did and one was booked for the following day.
Wednesday afternoon brought a more level mood. Before I had time to enjoy that , the mood switched the other way. This was the worst bipolar seas in a long time. Rapid cycling with freak waves. My mind was racing like mad at that evening's recovery meeting. I flagged up that was how I felt and again everyone was accepting. Nobody questioned it, nobody told me to pull myself together, nobody stigmatized me. Just support, yet again. It made me feel that perhaps I was very lucky to be bipolar and recovering alcoholic. After being given a lift the short distance home (it takes an alcoholic to see the need for this precaution) my mind really was speeding. I felt unnervingly good. A mere day ago I had been suicidal, now I was hankering for my wife's return from work to satisfy urges I wasn't sure I should be having right now. Of course , given the stress of recent days and my being out of character she was decidedly not in the mood. When she went off to bed an hour or so later the next cycle of insanity filled me with dread. An indecisive walk across the dining room switched into pacing. Oh God not This! After my recent medication alterations which I thought had been successful, Mixed State was back. I thought perhaps I could stop it. Goddam it man you're just too mentally weak, get a hold of yourself! I thought. I tried slowing , no avail, then remembered a smoking cessation tip. Deep Breathing! It kind of actually worked, it slowed, enough for me to go to bed and neck a couple of sleeping pills. I was awake again three hours later.
I went to see the GP. This one was slightly cantankerous , actually I have always feared him a little. This is a no nonsense doctor. He hides his working class accent well, though it occasionally creeps out. No doubt an accent that suggests canals and factories is not favorable at medical college.
"Right Mr Geeman , what can we do for you?"
Already the blood pressure cuff was wrapped around my arm. Basically I told him my symptoms and what the nurse had said.
"Huh! well, pretty dam hard to fake a pulse of 110, what else, stand on the scales please shoes off. "
"He suggested it was all in my head"
Pregnant disbelieving pause from the doctor
"Of course its in your head man , its a mental disorder, you've lost quite a bit of weight"
"I can't eat when i'm wound up"
I expected a lecture.
"Very common with bipolar and anxiety disorders, we have to manage the illness first, appetite'll come back, this nurse offer any suggestions?"
He was scrolling through his monitor as he said this. As he came across my lithium blood results he asked...
"He know this?"
I then witnessed a very rare event, a signed up member of the General Medical Council, and I saw it distinctly, winced and mouthed the word...
He pulled a prescription slip out of his desk drawer , closing it rather firmly.
"Up Lithium to 1200mg. 600 morning, 600 night, repeat blood test in three weeks time. You need to see your psychiatrist sooner than May, anything else?"
How sweet the smell of victory. That was all that I wanted. Someone to acknowledge that my symptoms were real. That I wasn't making them up, that I needed and deserved treatment. That my life should not be left to run out of control. To date- I have felt extremely tired. I suspect the release of being pent up and in a state of mental emergency for a few days. The higher Lithium dose has definitely leveled me out quite quickly. I don't think the symptoms have just ran out of steam. The coinciding with the new dose is too obvious to me to be chance. At first I thought, too much. I panicked thinking i can't think, my emotions and creativity have gone. Well I've managed to write this tonight and giggled at it as well. Its a mere 48 hours on this dose also.
My wife and I have been having long chats. She is supporting me one hundred per cent. I asked her why. Her father had severe mental illness, it was not manged properly for whatever reason. He died early, in his fifties, isolated and alone. My wife explained
"I want you to have the chance Dad never had, to just give you a chance"
We are even closer now I believe. She is my rock.
I have a fair few amends to make also. Whether or not my behavior was under my control I have still upset a few family members. I was very rude to at least one down the phone. This had a knock on effect. I regret what I had said now as well as the way I said it. But I was ill , it wasn't my fault! No matter, damage done is still damage done and it is my responsibility to make amends. Mostly though, I have had support from my in-laws (my family live the other side of the country) my wife seems to have worked diplomatic wonders, she is my Kofi Annan. Those who are less shy about the subject are also asking me lots of questions - want went wrong? what does the lithium do? why do you have to have blood tests? I wondered why they didn't know the answers. But realized I'd never really told them much. I was even shocked to discover a few months ago, a brother-in-law did not know I was bipolar. This is a chap I see a couple of times a week, and socialize with regularly. I suppose a taboo illness and behavior, just doesn't get talked about, so the fact of my illness doesn't get passed on. Maybe I'm just seen as mental, hopefully I'm seen as who I am.
Our daughter is home again, singing, dancing and talking her way through the day from dawn to dusk. I am finding her easier to manage actually, even if tired. Or perhaps things that previously would trouble me, don't do so as much. Noise being the main thing. Our daughter is not a quiet child. But it is a delight for me to have her sticking her fingers up my nose again.
Obviously this isn't the end of this chapter. I'm yet to see, or confront the CMHN. Yet to see the Psychiatrist and I'm nervous about him siding with the CMHN. Natural levels of paranoia given recent events I suppose. But I mustn't dwell on it . That would be like someone focusing on their broken leg. I am still very cautious about the symptoms recurring, or the Lithium not working, or indeed working too much. Bipolar is an illness of surprises.
I am still battling on, overcoming difficulties, pushing for the right treatment but at last things appear to be going in the right direction though it is a rough road. I can imagine many without the resources I have fall swiftly through the net. I hope my experience can benefit others in some way.
You can follow the rest of my journey by following my blog at