Living in the relapse and the joy exiting the cave (Might be hard to read!)

My most recent relapse trundled on for what felt like an age. External circumstances also made things more tricky, which I'll explain. But in terms of recovery, for me things seemed to take much longer to click into place, and wellness was illusive for many months.

I'd started a new job in October 2014 which I thought was going to be my dream job. Community work, based in a Church environment, reaching out in a pastoral context and working with mixed faith communities and those of none. It was 30 hours a week, but seemed manageable as if I needed to be at an evening meeting I could reduce daytime hours to balance it out.

In hindsight, even after the first 3 weeks I should have run for the hills. I wanted to make the job work, I wanted to succeed. I was invited to a service to meet everyone and I met the archdeacon whilst having coffee afterwards. He asked me if I lived near the church, and when I said I didn't he looked at me like something he'd stepped in something. 3 weeks later I sat in his office during an induction meeting where he showed how clearly disappointed he was that I wasn't an Anglican and said, "Oh, Baptists have a funny way of doing things." My boss, a vicar, was also hostile and unhelpful, the key congregation members were suspicious and the local population were clearly not interested in working with the Church as they were quite happy doing their own thing.

Roll on 3 months and the daily onslaught of chauvinism and misogyny began to take its toll. I was working too many hours as they didn't let me juggle my hours to stick within my contracted 30, and I was totally isolated as a worker and saw nobody for days on end. I can self nurture, reach out for help and rest, I can generally self manage well but the prolonged confusion around work tasks, lack of management and insidious toxic behaviour pretty much finished me off. By the end of January 2015 I was feeling overwhelmed and by April 2015 my head had gone completely. As a bi-polar person, I need to manage my external circumstances in order to feel well. I need regular sleep, decent stress management, companionship to ward off isolation, and a supportive/emotionally understanding group of people to be around. I'm not fragile like porcelain, but building resilience is critical in maintaining wellness. With depression, you spend quite a bit of time trying not to be ill, pretending that you are OK in the hope that it's just a dip, withholding the truth of how ill you feel as you don't want to disappoint or frighten your family by being ill again, and running on hope that you are just having a difficult week.

In may 2015 I was signed off as sick from work and surrendered to the truth of the situation. I was having a relapse for the first time in 2 or more years. In July 2015 I started obsessing about hanging myself. Whats odd about suicidal ideation is that it's like a video tape running in your head on full volume whilst you smile on the outside hoping the noone can see inside your head. It doesn't turn off and pretty much gets louder and more vibrant. Also, with each severe relapse I have experienced, my suicidal ideation has been different.

So people ask you how you are on the school drive whilst picking up the kids and you want to say, 1) Fine thanks, please don't ask me anything else or I'll cry, 2) OK, 3) Suicidal, and you? 4) Don't talk to anyone. I try as much as possible to keep things normal when things are awful. So doing the school run it's incredibly important but massively difficult. Even leaving the house is traumatic but I know that if I manage it, I am inching towards wellness by overcoming the desire to give up. I have a really strong memory of being on all fours on my living room carpet one evening, crippled by my thoughts, trying to decided whether or not to carry out my dark intentions or pick the boys up from cricket. It's the small normal things that keep you holding on.

I see my psychiatrist who asks me about my current mind set. The intricacy of my scenario including location, time of day, logistics and desire to learn more about knots helps Dr. Pingili to call the crisis team. This is when I end up in respite talking about eye removal by spoon, having my photo taking in case I run off, counting out my meds. to go in a secure box and wondering why I can still have my Bic razor in my room?

From July 2015 to November 2015 I see 4 different psychiatrists, not because I am so sick that noone can help, but because they are all leaving and have no replacement. They try and sort out my medication but it is only in November 2015 I finally begin the lithium treatment journey. So I've been feeling ill for a year pretty much, and at this point I am crying out for a solution.

So when I wake up one morning, and the mental rebirth into normality has occurred, I feel like running up and down the street in joy, announcing to the community that I have rejoined the land of the living! On the outside not much has changed. I look a little less grey faced, less haunted maybe, but generally it is my internal world that is in chaos. I have cast off my hair shirt and ashes and can finally start genuinely engaging with the world around me. It is definitely cause for celebration as my inner light switch has been flicked back on. I am no longer dormant and stifled. Am am no longer faking it to make it. Hello life!!!!!!

Leap of faith

I've spoken to a few people about taking, or not taking, lithium. Many people are completely averse to the idea and that included me for a long time. One person in particular, who shall remain nameless, had tried everything and her life was in total chaos. As an act of desperation she agreed to taking lithium. Amazingly for her, it had a miraculous impact on her mental health and she was able to begin living again and functioning like most normal folk. We talked about our symptoms, fears and hopes for the future, and she encouraged me and reminded me that I can always stop taking it if it feels wrong, or isn't working for me in the way I'd like. As with all things, I needed to be reminded that I have a choice in how I respond or what actions I take. Having some power and control in my mental health recovery is really important.

When you have the tablets in your hand they look totally innocuous. There seems to be an impossible leap between the innocent looking pills and the unfathomable complexity of my neurohormones and wellness. It's like dark magic. I do have some knowledge about neurons, calcium channels, neurohormones and brain physiology. My first job out of school was at Eli Lilly doing research on rat brains with Prozac and various other chemicals. It's like a bad joke really, but maybe the universe wanted to equip me with understanding in preparation for my insanity jaunt! There are more than 2000 second messenger systems and pathways around your head that allow chemicals, minerals and madness to travel about. It is fascinating but when you have to homogenise a rat hippo-campus before lunch it rather loses the romance.

Anyway, I pop the medicine and wait. It can take a while for lithium to get into your system. I have read that your body can take 18 months to adjust to the introduction of lithium and that every person metabolises it differently. Every person taking it has a completely subjective experience so dosages vary dramatically amongst the lithium community. I started with 400mg with a slow increase to 600mg with regular blood testing to ensure I'm not getting poisoned. The idea is to take as little as possible with maximum results and I chat with Dr. Dyer regularly to tell him how I feel and if I am having side effects. Its funny the things you notice about people, but as psychiatrists go, he seems to be a bit "Hip". He has mid-length floppy hair, wears pointy shoes and has an earring. We talk about my kindle and music far too much, and he always appears shocked when I actually do as I'm told around medicating, blood tests and appointments.

Not much happens at first, and I wonder if it's actually going to work for me. I ma cynical and keep my expectation low to ease any potential disappointment. Then one morning, I wake up and the world has shifted. Being chronically depressed is like living at the very back of a dark cave, and you can see the light at the entrance, with people walking by and muffled sounds of the real world going on as you struggle to even touch it. People pop their heads in to say hello and to check if you are eating and breathing, but they cannot fully enter the cave and you cannot exit. On this particularly morning, as I sat up, I had the dawning realisation that I was sitting at the very edge of the cave entrance. It's the only way I can explain it. I could hear the rabble of people, feel the sun on my face and the effort of breathing had diminished. I felt lighter and freer and visible.

I had exited my cave.

Lithium (Not a song by Nirvana)

lithium

ˈlɪθɪəm/

noun

1. The chemical element of atomic number 3, a soft silver-white metal. It is the lightest of the alkali metals.

   • lithium carbonate or another lithium salt, used as a mood-stabilizing drug.(Thank you google).

   
   
2. So after nearly 8 years of having my diagnosis, my locum psychiatrist, who replaced the temporary locum psychiatrist, asked me why I wasn't taking lithium. "I have a point" he said. He went on to tell me that up until 3/4 years ago, lithium was THE drug of choice for people with bi-polar disorder. Then, the super pharmacists of the world, created Quetiapine, a new A typical anti-psychotic drug, that was meant to be the new panacea of the age. So they started prescribing that instead of lithium. "Considering the length of time you have had your diagnosis Emma, why have you not been offered Lithium?". 

     At this point I could ramble on about feeling like a guinea pig for a variety of medications, none of which have kept me stable for any length of time and made me feel like death; That my psychiatrist was trying to be creative, exploring alternative options of treatment, that he was paid by Glaxo? Anyway,  I shall bullet point.

Prozac - Didn't work

Citalopram - Worked for a while at maximum dose, but then there was a health scare about heart attacks

Quetiapine - Massive sedation, massive weight gain, didn't stabilise me

Abilify - Weight gain, sedation, tremor (Requiring procyclidine)

Depakote - Reasonable mood stabilisation but only for 2 years and then it stopped working. Also caused weight gain and made my hair fall out

Lamotragine - Lasted about 4 days as I was allergic to it!

So I sit in his office discussing the pro's and con's of beginning the lithium treatment journey. Typically, he tries the hard sell of positivity first. It was discovered by ancient peoples by accident, it has been used as a treatment for mania very successfully for hundreds of years, it tends to work for treatment resistant people, it reduces suicidal tendencies and deaths dramatically. Ok, so what's the catch? (More bullet points)

It's toxic if not managed properly. Like death.

Effects your kidney function. Olympic urination.

Interferes with your thyroid. Energy levels all over the place, weight issues etc.

Effects your salt levels as it is combined with salt to  make it enter your blood stream, therefore....

Sweating is an issue as the levels of lithium in your blood can fluctuate (Don't over exercise or sunbathe too long)

You can get the shakes quite badly

Skin itching

Dry mouth

Oh and you need regular blood test every week for 2 months at first, then every month for a bit, then quarterly for the whole time you are on it. Also, Lithium interacts with pretty much every other medication on the planet making it, you guessed it, TOXIC, so I have to carry an alert card everywhere I go, and if I need to take antibiotics, ibuprofen, antihistamines etc, I have to take them at my own risk, get an additional blood test and look out for the signs of imminent death!

"Go away and think about it Emma, and tell me at your next appointment what you would like to do." How about Dr. Dyer, exchange my brain for one that works instead of trying to poison me creatively over an extended period of time. 

It's a horrible place to be. My illness without medication is entirely unstable. My relapses have no pattern, and my mania tends to be rapid onset with little warning. Although I try and manage my triggers, don't drink or use drugs, rest, manage my stress and generally look after myself emotionally and spiritually, my illness is still pretty rampant. I also have more than myself to think about. I always have to consider my family situation in any decision I make. I can completely identify with those people who abandon medication and just live in the madness, as to be free of chemicals, side effects and the constant interrogation by practitioners must be magical. Sadly the consequences of that are rather dramatic and can cause devastation for patient and everyone else concerned. 

I'm fed up of being fat, tired, slightly bald and miserable. Oh yes, and when like this, telling me that riding a bike might help me feel lifted, that I'm so demotivated my life is passing me by and I could try something new, is a REALLY BAD IDEA!!!!!! Sorry I digress! So I decide I will take the lithium. On balance, I need to start living again, feeling released from the heavy weights that follow me around all the time. The commitment and energy it takes to just "Turn up" every day is enormous and I want to feel some enthusiasm again and feel that I am genuinely engaged in my life, rather than watching painfully from the sidelines. 

Bring in on Dr. Dyer. 

Starting again

My enforced hiatus from blogging appears to be at an end. I find myself with emotional and practical space to begin writing again, and I've also had lots of encouragement from friends. Turns out people like walking through the forest of of my mild insanity with me. Weirdo's!

I can't actually remember when I last blogged, although if I looked on my own site I could probably work it out. It feels like a long time, and a lot has happened. What doesn't change is mental health relapse, struggling to hold down a job, the ongoing trials of marriage and parenting, experimenting with medication, being chubby and generally finding the business of living really hard. I am currently unemployed (the first time in about 25 years), and have had to come to terms with the fact that having a chronic mental illness seriously interferes with fucking everything! I know that doesn't sound like rocket science, but knowing this fact intellectually and living it are two entirely different things.Oh and I went to respite to stop myself hanging myself in the Highcross toilets and met a man who told me that the previous occupant of my room tried to carve his eye out with a spoon!

Most of the people I have spoken to do not want to be defined by their illness. They want it to be a facet of their being, a reflective side of a wider personality that makes them interesting or only makes a small impact on their lives at various times. Sadly for me I have to not only acknowledge my illness but give it living space. I recently told a therapist that it's like the third person living in our marriage. Sadly I have to let it live with us, but quite frankly I do not want to feed it, speak to it or generally give it the time of day! It's an uninvited house guest of the worst kind. It's chaotic, destructive and sucks the life out of everything. Oh, and I can't evict it as it is forever attached to my sodding brain.

So I am trying to readjust my living boundaries. I am letting go of what was, and moving in to what might be. The up side of this is trying out new things, actually being at home to support the kids as they move in to really challenging times in their lives, giving myself some time to be gentle with myself instead of killing myself to be "normal" and feeling more balanced. The down side is having to expose your inner most fears and madness to a benefits officer whose sole purpose in life is to shame you, patronise you and convince you that you are lying about your condition, Oh and you do this whilst sitting in an office that is filthy, smells like a mushroom farm and bans food and drink for fear of them being used to treat staff with violence. I am poorer now that I was when I was 15 but at least I have a platform to begin again.

So I will write, maybe a stream of consciousness, maybe bullet points, maybe sarcastic poems, but I will put it down and see what happens. Until the next time...