My Bipolar Story….and why I am coming off Medication

I was only diagnosed with bipolar a year ago, but my first manic period reared it’s ugly head in 2006. As someone who has always loved sleep (even though it never comes easy as I can’t switch off my brain) I wasn’t even close to prepared for my first manic period. It lasted around 9 days and I saw my dr. everyday for the last 7. I hadn’t slept in days. Each day my doc was trialling me on a different sleeping medication anything to get me to sleep as I was massively loosing the plot.

Everyone has those stories about partying for 1 or 2 days straight. But when you don’t sleep – actually no sleep at all – for 3 days you start getting loopy. I started hearing voices correction – VOICE. The voice was my own. Someone recently commented on another blog I follow (where the home ed mum has just been diagnosed with bipolar) that “depression is a lying bastard” and it is so true. The voice I was hearing was constantly telling me I was fat, ugly, unattractive, that my husband was cheating on me (when he didn’t leave the house without me as I needed a carer full time at that point), that I had no friends, that no one loved me and the real killer – that my kids would be better off without me.Basically all my worst fears were now bombarding me 24/7 with no break.

But that wasn’t all – I cleaned like a mad woman. I sorted this and that. I cleaned out the kids rooms, vacuumed the whole house, sorted the toy boy, cleaned out kitchen cupboards ect. Sometimes at 3am.

Around day 5 I was constantly screaming abuse at him, the girls were scared of me (can’t say I blame them) and was talking to myself frequently (as in I was responding to my own voice in my head). I was sitting in the bottom of the shower when I noticed the razor out of the corner of my eye. In an act of sheer desperation I cut into my skin, not deep – mainly superficial and experience instant relief. The voice stopped and I feel like every single stress in my life was lifted and I slept. Not long, maybe a few hours, but it was bliss. But I was still in the middle of my mania. By day 8 the dr. was really concerned and gave me some pills which he said “could usually bring down a psychotic patient”. It was one of the many medication samples he had in his office. He told me to take half, and if nothing had happened in half an hour to take the other half. I was now completely strung out and desperate for sleep. I took one whole one in the hopes I could just skip to the sleeping. 2 hours later I took two more. Nothing. By 5am I had taken the whole pack (I think it had around 10) and still nothing. So I cut myself again which ended with the same blissful feeling and I slept again for just a few hours.

When I woke up though it was different. I had no energy, for the most part the voice stopped and I had no real desire to do anything. I slipped into a pretty bad depression.

I have only had two extreme manic periods. That first one and the one I had last year that sent me straight to the psych ward. My other manic periods were milder (I have had up to 4 or 5 a year) usually with me not sleeping (or sleeping very little) but instead I see myself as highly functional. I ran a successful business (successful in that I loved the work, I had wonderful clients and I supported my family financially) for years and a charity and during those periods that I now recognise as “Mania” I would just work 24 hours straight. I would come up with new advertising campaigns and come up with fundraisers for the charity. But I still had a tendency to go crazy cleaning (I broke my oven door off during a manic period when I decided I had to clean beside an oven that was built into the bench….the oven was screwed in). I also tended to self harm during these times to try to get some sleep.

For the record I can’t actually remember the last time I self harmed. I stopped because it upset those around me. As I never endangered myself at all, I never used it in a hope of killing myself or anything like that, I still struggle to see the issue (don’t worry – that is one of the many reasons I am in therapy) but I stopped because I was asked.

I was diagnosed with bipolar when he went in to see the doctor for issues that he was dealing with (stress and anxiety with in our marriage and depression that had plagued him since childhood). He was talking about me (our GP always asks how I am and can sometimes act as a therapist for both of us – he is AWESOME) and my GP apparently started swearing. In that moment he saw all the pieces together. He realised that I most likely had bipolar and begged my ex to bring me in the next day.

Over the next few weeks I was spiralling down with a really bad depression. I didn’t want to get out of bed and I let all my work and charity responsibilities fall apart. It was awful. Not just because I was feeling so bad about myself, but people were actually emailing me to tell me what a horrible selfish jerk I was to let down the charity like that (for the record none of the services we offered were effected – it was purely admin and also the annual volunteer thank you program that I ran…which still ended up going ahead). Imagine feeling the worst you have felt about yourself and then having daily reminders about what a shit person you are come from people who you admire greatly. No one asked if I was ok.

So I had been put back on anti depressants, but they weren’t helping. Then I was put on another that actually made me happy and almost functional….but caused up to 5 migraines a week (I get stroke like symptoms during a migraine – fuzziness, garbled speech, numbness on one side of my body and extreme nausea) which could only be helped by sleeping for up to 24 hours.  Then my dr. realised that I likely had bipolar. I answered a series of questions and BAM diagnosed with bipolar disorder type 2. Then it was straight onto mood stabilisers.

Bbut by then I was too far gone. I went straight into a severe manic period. I sent an email to every member of the charity saying that I was resigning as president and then when straight on to researching easy and painless ways to kill myself. When I was discovered talking to myself in my cupboard he called an ambulance as I had checked out. I was taken to the local psych ward and admitted.

The next three days were spent in a vallium induced haze. In order to help me sleep and come off all the meds I had been on so they could reassess me and decide what medication I should go onto next. During that time I had a nurse decide to report me to DHS as she decided I shouldn’t be allowed to homeschool with a mental illness, the same nurse tell me I would be having ECT (also known as electro shock therapy), clients calling the psych ward to ask about when they would be getting their photos and the new interim president of the charity show up to drill me about non essential issues. I was under more stress that ever.

Psych wards terrify me. As an abuse survivor I need a clear run to the door. I get completely freaked out if someone stands between me and the only exit (which my ex has a tenancy to do in a fight because he knows my first instinct is to run) and in the ward the doors lock from the outside. The staff never lock you in, but the occasional patient wandering the halls at 2am sometimes finds it funny. I am an extremely introverted person when I am depressed and reading in my room is not acceptable according to the staff – I was threatened with isolation if I didn’t socialise (I would have taken it…but isolation also means no access to family until you are “compliant” again). I didn’t want to socialise….those people were crazy. (oh the irony) Two guys literally got into a punch up in the tv room because some guy wanted to watch neighbours. I just wanted to see my therapist, take my medication and sit quietly in my room.

After a few days the psychiatrist who was in charge of my case decided on a combination of anti depressants, mood stabilisers and vallium as needed (to help me sleep and relax when I got really upset). She also said I didn’t belong there. But she also said I wasn’t ready to go home either. I had hear a few people talking about this “amazing” place that was built up to the point where a lot of patients thought it was an urban psych ward myth. A place where you had your own room, which locked from the inside and had an ensuite and even a mini fridge. I hadn’t believed it (you have no idea of the weird shit that gets discussed in the dining room of a psych ward!) until she said that she was planning on referring me.

A few days later the ladies from “PARCs” arrived. It turns out the place was real. A 10 bed facility in Deer Park that was a step up/step down program (step up from home, step down from hospital). All the myths were true…right down to the mini fridge. I was told more about the program and accepted on the spot. I was told to be ready for pick up in two days. I was so excited to be getting out of that place. And sure enough two days later they came back and picked me up and took me to my new home away from home.

It had five rooms on either side with a common area in the middle which included a staff room, full kitchen, dinning room and lounge room. It had 2 staff on each day (and one over night) that were kind of like social workers. They were there to help with any problems that arise with yourself or another client. There was also a psychiatrist on staff that worked a few half days a week (you saw him on assessment and then as necessary, followed by family appointment at the end) and a GP who was there every weekday. I was assigned a case worker and shown to my room. I unpacked and opened my window and breathed in fresh air. It backed onto a huge parkland and I was so happy that I finally had a better place to see my girls (the family room at the psych ward was tiny and dingy). They also had a second living type room that was a family room with a tv, DVD player, small kitchen and a wii. There was also an amazing vege garden. I couldn’t believe that this was a public funded facility. I saw the GP straight away and she was amazing (she actually lives in the same suburb as me and I bump into her occasionally). She was there for day to day monitoring of meds as needed as well as any general health issues that cropped up. She also was able to refer me for things that I needed.

You were to help yourself to breakfast and lunch (the pantry would be unlocked then) and there was a morning meeting at 9am everyday. This took some getting used to. Dinner was prepared by “clients” and each week at the planning meeting everyone would select a night to make dinner (two staff on hand to help those who may not know how to cook) and write down ingredients for shopping day. But more than all of that…I had freedom. I could come and go anytime as long as I signed in and out so staff knew where I was. I would go for walks as well as jump a bus to high point to get lost in the crowd. They encouraged day release at first (going home for the day), followed by over nights and then weekends.They also regularly took day trips, went to the movies and had craft days ect.

For the most part it was amazing. If I ever needed more care I would gladly go back. There were a few tiny issues…but most of them were fixed when I somehow became the “voice of the people” which made me not the favourite of two particular staff members who I ended up complaining about (one because she twice spent the night in the other building instead of the staffroom in the building we slept with – the first time she did a client collapsed and we had to call an ambulance. The second time a scitzophrenic sleep walker let himself into a room calling out for his dead wife….naked).

After a few weeks it was deemed that I needed more medication than my anti depressant, mood stabiliser and now sleeping pills. So I was put on (what I now call evil) something called “seroquel”. It is used as a mood stabiliser, anti anxiety, anti depressant and anti psychotic all rolled into one. I was gradually weaned on it in the hope that it would eliminate the need for sleeping pills (I forgot to mention it is a hardcore sedative) and would help control the mood swings and the anxiety which had become really bad.

I accepted at that point that bipolar was for life. I wanted to get better so badly. I wanted to have a normal life. So I accepted any medication with no further thought in the hopes that it would improve my life. I accepted that medication would likely be a lifelong way to help treat my bipolar along with a lifestyle change and a good mental health support team.

When I got home I continued to increase my seroquel as I was instructed. When I got to 300mg a day I stopped. I was no longer feeling any anxiety….I wasn’t feeling anything. I slowly retreated to my room. I stopped showering. I stopped visiting anyone. I couldn’t finish any outstanding work. I became more and more detached to everyone and everything. For the last year I have left the house no more than 25 times and most of those were doctors or therapy appointments. I maybe leave my room once a week. I have trouble finding motivation to do anything. Not only does it have a strong sedative effect, it also slows metabolism and increases appetite. So put together a lack of motivation to move at all, an increased appetite and a slow metabolism and its no wonder I went from a size 14 to a 22.

At the start of this year I went off my antidepressants – and was able to cry again. I have come off antidepressants before so I knew what to expect. I cried for days and I felt so relieved. I have always been a big crier – an emotional person. To have that removed was bizzare. I hated not being able to cry. The anti depressants were only meant to be temporary and they did their job and then I was done.

Then I ran out of my mood stabilisers and decided on a whim to see how I would cope without them. It was a stupid move on my part as it could have been disastrous. But I honestly noticed not a single thing going off them – it’s been a few months now and no difference.

It was around that time I started to think about killing myself again. This time I wasn’t depressed. I just didn’t see the point any more. I may be alive, but I haven’t lived since the medication took hold. So I started to try research if there was anyway to treat bipolar naturally.There wasn’t much out there but I started piecing together bits and pieces. But there was a really disturbing statistic I kept coming up against….people with bipolar (and who have come off medication) have a MUCH higher rate of suicide than those with bipolar who have never been treated with medication.

Trying to make the decision has been incredibly difficult. But it was only after the girls father told me how much he has watched me disappear the last year that I started to head towards the final decision. Not just that – I have maybe 5-6 manic/depressive periods a year – roughly 50-60 days of being almost “non functioning” on medication I have managed to leave the house around 25 days (only ever half days) and maybe 5-10 days where I have functioned on a level high enough to use my brain so roughly 305 functional days vs. 35. Statistically I am better off just rolling with my mental illness symptoms when it comes to actually being able to live my life.

Once I made the decision I had to convince my mental health team it was a good idea. My psychatrist said there was no point in me seeing him if I wasn’t taking medication and disagreed with me without wanting to listen to anything I had to say about the life I was living. I stopped seeing my therapist after she enquired why I was so upset over my (7) miscariages and suggested I get a dog. So all the was left was to see my doctor.

I kept cancelling my appointments last minute in fear that he would refuse. But today I bit the bullet (and ran out of my medication…the last time I missed it I almost landed back in the psych ward) and went along to see him. I love my GP so much because he tells it how it is. After we talked about my brother and his girlfriend (who I sent to him as she has borderline personality disorder and self harms) for ages he asked why I was there. I launched into this massive tirade about all the things wrong with me, all the things I want fixed and told him I needed him to lower my dose so I can wean off safely or I would just do it cold turkey and probably go insane. We had a bit of a yelling match in which he told me it would be easier for him to make a decision on my medication if I showed up for my appointments and told me that I come in a railroad him and I just kept repeating over the top of him “so you aren’t going to lower my dose” he finally yelled at me to let him finish (yeah thats usually done in our appointments…sounds weird but I like that he can be firm and no nonsense and inform me and he likes that I am straight up and down with what I want and need from him) he said we can give it a try. I walked out of there with a script in my hand for 200mg.

Of course it could be too big a jump – we both know that – and things could end badly with me back on a higher dose again, but he is willing to work with me and knows when I make up my mind on something it’s best to get on board and support me than oppose me and be mowed down. He also knows that I would never have made this decision without a lot of thought and research.

I won’t lie and say I’m not scared, because I totally am. I am petrified. My biggest fear (beyond the suicide statistic) is that I will loose the plot and end up back in hospital where I will be considered non compliant if I won’t take medication. But I have to do something.

project:girl

 

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