Lived Experience Forum

[Milk]

Hi, I'm very new to SANE, I've seen it suggested before but never bothered to look until I was researching my medication earlier and this was the only Australian page I could find with info. 

I am a 30year old female. I have schizophrenia diagnosed in Feb 2020, PTSD, Anxiety and Depression. My medication consists of my antipsychotic (Who's name I'm not allowed to say starting with A) Depot 400mg which I have been on for 17 months now. 

I have been on The depot for over a year, every 4 weeks I visit my GP and get my shot. After a severe episode where I was involuntarily put into mental health facility, I was told I either accept the medication willingly or I would be scheduled at court and it would be made mandatory. I don’t know where I stand with it to be honest, the side effects are less than other antipsychotics but still quite debilitating, mostly extreme fatigue and tiredness as well as increased appetite, sometimes uncontrollable eating, in the middle of the night type eating which has led to 20kg weight gain (size 8-size14), it has also caused my skin to become quite bad on my face and upper back and arms, I also have some of the less common side effects such as increased desire to gamble and increased sex drive as well as an involuntary movement in my lower back where I twitch and in my lower jaw where it moves up and down and side to side at times, more so when I am nervous, anxious, concentrating or it’s quiet. I feel like I have no motivation or drive to do daily tasks at home and I experience depression like symptoms. I tend to spend most of my free time sleeping. On the flip side it has balanced my head out, I no longer have episodes of psychosis, everyday triggers no longer have the same affect on me, I am still aware of them/ see them but they don’t bother me and start me on a negative spiral. People close to me seem to like me better, they no longer have to put up with or listen to my ‘crazy’ thoughts and ideas and I’m much more level headed. I was able to get my children back and I am able to hold down employment. So I present as though my shit is together. But the side effects are debilitating and it’s not as functional as it should be. Plus I miss who I was or the side of me before the medication, I never had much of a problem with my schizophrenia, some episodes of psychosis were way too dark though and after weeks and weeks on end it would get tiring BUT I kinda liked my schizophrenic mind and world so essentially I am only using this medication to conform to society standard and fit in with the rest of the world. It is not the only antipsychotic I've tried, I was on other oral medications as well previously but as soon as the side effects would begin, I would stop taking the medication. 

Aside from a general medication review I was just wondering

1) what can you do to overcome the side effects in particular energy levels? (I do CBT therapy)

2) is there a better solution than medication? Or different medication? 

3) anyone else kinda miss their psychosis? 

[Rosie]

Hey @Milk 

So interesting, what you wrote. Thanks for sharing!

In response to your questions - I tried numerous medications for my schizophrenia and I have finally found one that I am not so tired on. It's a shame we can't mention the names, because it's hard to connect about them. I take mine twice daily on the highest dose and I can still exercise and feel relatively energetic. I had to use a weight loss program as I put on a lot of weight, but I yo-yo over the years, I have found. Energy in, energy out - I am back on the putting-on phase of the cycle. I never like this bit.

In response to your question about psychosis - my delusions were grandiose and in some ways I miss them, in some ways I am completely traumatised by them! I was the secret queen! A very strange thing, the secrets were on the television, radio and my boss knew - but it was all a secret. So strange looking back, but it was exciting. Gosh, it was like living in technicolour, everything was bigger, more improtant, more exciting. In some ways I miss my importance and when I came out of the psychosis I grieved and had to deal with reality again. That was super hard. I see it now and I cringe and wince at some of the things I did - I actually acted upon many of my delusions (I ordered a wedding dress online because I was going to marry a celebrity who had secret psychic messages for me), and this is weird and hard to explain to anyone who doesn't get it.

I love the line in "Words on Bathroom Walls" when the Mum says, 'I wish I could be in there with you'. No-one is though, are they?

Dealing with everyday life now I have been well for about 2 years - I am so scared my schizophrenia will come back, and get flashbacks of some of the things I thought. It's like two realities can exist inside you and it is hard when you're trying to work on yourself and be a good partner/worker etc in a normal world, with such strange history in your thinking and experience.

Thanks for your post - what is depot?

Rosie

[Gwynn]

Hi @Milk - I had my first episode of psychosis in 2019 and have been on an antipsychotic since. I have also gained weight and had my face break out. I have also suffered from the negative symptoms of my schizoaffective disorder and not been able to care for myself very well.

Something that's helped me with my energy levels has been exercising twice a week with an exercise physiologist - you should have been offered a referral to an EP when leaving the MH facility to help offset the weight gain side effects of your meds. Even going for a brisk walk might help you, something that gets your heart pumping. In DBT this is called 'opposite action' - doing the opposite of what the negative symptoms of your schizophrenia wants you to do. If you're not sure what 'negative symptoms' means in terms of schizophrenia/schizoaffective disorder, have a read of this: https://livingwithschizophreniauk.org/information-sheets/negative-symptoms-understanding/ or ask your psych about them.

Something else that's helped me, besides the exercise, is the concept of 'personal medicine' - not the drugs I take, but the activities I do, that either keep me functioning (like doing a load of washing or having a shower) or that make me feel better (like exercising or knitting).  You can read more about personal medicine here: https://www.recoverylibrary.com/assets/browser_test/personal_medicine_worksheet.pdf  I reflected and discovered my personal medicine myself, and now I 'take' my personal medicine often and it helps me to keep going. 

I miss the clarity of thought I had with my psychosis. 

@Eden1919 @greenpea , you might have something to contribute here?

[Eden1919]

@Milk  And thanks @Gwynn  for tagging me 

I am currently on a depot which by the sounds of it might actually be a similar if not the same as the one you are on I am also currently on a 6 month treatment order because I did refuse to have the medication in hospital and well I can’t refuse it now. I have schizoaffective disorder which I am still trying to accept within myself. 

as for the side effects I try and exercise as much as I can but I have also suffered massive weight gain and it is very hard. I do really struggle with the negative symptoms stuff too and the tiredness so I am afraid I am not much help there but do talk to your doctor about it and ask what they can do to help you if you haven’t already. 

I was unmedicated for a long long time and idk if it was better or worse I think it really depends on the person but I hope that one day I won’t have to take it. You can always ask to swap medication if it is too much on this one. 

Do i miss it yes sometimes especially the times where I was manic as well because that just felt amazing and for a while after a big episode I kind of fought to get back to the mania because I thought I had unlocked all the secrets of the universe but anyway when I look back a lot of the scary stuff I don’t miss. Like thinking everyone is trying to hurt me and that I was being stalked and other stuff. It is ok to miss it though I think that is pretty normal you kind of live in a whole other world for a while and I think people really don’t understand that there sometimes needs to be a grieving process if they haven’t experienced it. 

[Milk]

@Gwynn Thank you so much for your reply and for the links and advice. 
it does make sense! Positive energy encourages positive energy to grow, I just have to be a bit tougher and stronger and fight what's putting me to bed and holding me down, just bite the bullet and step out of my comfort zone and push myself that little bit further once a day. 
I am lucky I have a great and understanding father and my children are also very supportive and will encourage me and help me. I struggle to accept it a lot of the time though as well. Everything's just a giant contradiction at times. 
Thanks again so much, I will try to implement what you've suggested! 

[Milk]

@Eden1919 your story really really resonates with me. I held the master secrets everyone wanted, i held the key, I was the chosen one, I had the greatest superpower in the world and I believed with all my heart and soul that I was out here to save the world. Well in one of my stories. I had a few different versions, scenarios that used to circulate and they weren't all that beautiful unfortunately. I too went years and years hiding and minimising the extent of my episodes and beliefs from everyone. I'd lock myself away for weeks on end and ride it out. Because outside everyone was out to get me, even inside id pull gyprock off walls and destroy all the lights and pull all my electronics apart believing everything was watching me. I was hospitalised 6 times then in 2 years for blocks of up to a month, I learned how to play their games and tell them what they wanted to hear so I could get out, but my last visit I wasn't so lucky and to get out I agreed to the medication, choosing it 'willingly' made me feel like I was still somewhat in control of the situation. I didn't want them in my head, I couldn't understand why they wanted to know so badly the extent of my special mind. But it's gone and I grieve it every day. 

[Eden1919]

@Milk  Yes, I too got very good at hiding things from the doctors I learnt very early that if I didnt talk to them they would eventually give up and let me go and so I was "safe" (I thought at the time that the doctors and such were all working in this big scheme to try and steal my soul and also to cause the end of the world and i was supposed to save everyone) well that worked for a long time until I just got exhausted no matter what i did the voices always wanted more from me and I couldnt give them what they wanted and anyway it has been a long long road and things still arent perfect I still struggle to believe that i have an illness and am not just gifted or chosen for some special task but I am trying to just focus on engaging in the world everyone else lives in and to do the things i want to do in that world. and the meds are helping keep the voices quiet so that is strange but not bad. i guess that is all we can do sometimes. 

[Gwynn]

@Milk - for me, it's about being kinder to myself, as well as being disciplined about it, making it a habit. (Because I suck at things that require willpower.) Glad that you've got the human resources of your father and your children in your corner, cheering you on! 😄 I'm sure you have many strengths that will help you achieve some more heart-pumping physical activity in your day and some more personal medicine to complement your depot.