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greenpea
Senior Contributor

|So trapped (why I want to go off my meds) for carers

Hi I read on the forums that alot of carers do not understand why their son, daughter, mother etc. go off their meds and do not understand why that is considering the meds control the worst of the symptoms of the mental illness.

 

I can ony speak for myself as someone who has bipolar1 and schizoaffective disorder but imagine being a wild brumby and having to wear a bridle 24 hours a day .... that is what it is like.  You do it because you have to otherwise you are back in hospital or worse ....  you put on weight (a lot) are sleepy and see someone in the mirror who is not you anymore.

 

6 of one half a dozen of the other. Having to take these medications are not easy to do but we do them so when carers (and I am one myself too of my son) wonder why we fall off and stop taking them  (again) it is not that we are selfish or bad we are just dealing with an awful situation where there are no winners.

 

greenpea

 

 

23 REPLIES 23

Re: |So trapped (why I want to go off my meds) for carers

@greenpea

Thank you for your post. Knowing what others with lived experience feel about medication has helped me so very much. I believe psych education to be essential for carers and I think this involves listening to and understanding the view of those who are affected by MI in relation to medication. As you allude to, these are not innocuous drugs.

 

Learning about MI resulted in me realising some difficulties Mr D was having were likely due to adverse side effects, some likely iatrogenic. I have made it my business to understand as best I can and following Mr Darcy's desire to reduce his medication burden have advocated for the 'least restrictive' treatment.  Additionally I have on ocassion demanded evidence in relation to either drug or dose .  If Mr D can do without the drug he is currently tapering I will be pleased for him, as you say, the side effects are not pretty.  Relapse potential is high and on a background of a failed attempt I do have fears but would not use these to withhold support for the discontinuation, I know I would not want to take a drug that was not absolutely necessary.

 

To help keep med use as low as possible, I have encouraged and  supported a holistic approach to health and  community. Things like sleep hygiene, diet, no alcohol, exercise, peer group support, getting out and doing enjoyable things to name a few.

 

I don't know how you feel in relation to your son and any prescribed medication he has been given, but I would have difficulty supporting no medication, in the same way that I would have reservations if Mr D had another debilitating condition and particularly one that was potentially terminal if untreated (but again would look for the least restrictive option).

 

Thank you again for drawing our attention to this very important topic.

 

Darcy

 

Re: |So trapped (why I want to go off my meds) for carers

Thanks for your interesting post @greenpea - and thoughtful response @Former-Member!
I'm curious what prompted you to start this important discussion today? Like Darcy said - a very important topic.

Re: |So trapped (why I want to go off my meds) for carers

@Former-Member@s-jay My post was soley due to a number of recent posts from mums and dads concerned about their children or children concerned as to why mum or dad is not taking their medications. I hate my meds but I take them not because I am a saint it is because I have no choice and neither does son2. It is an awful situation. 

I also find that my family think I should be happy being on the meds and being back to 'normal' whereas I hate it. It is frustrating when they say well you know you have to stay on them otherwise you know what will happen .... yes I know but it doesn't mean that I am happy about it. I know I will never be myself again, that self before mi or with medication that self is gone now and that hurts.

Re: |So trapped (why I want to go off my meds) for carers

I know what you mean @greenpea I too feel subdued on the medication and miss my old self. I also have a the added side effect of anhedona, an inability to take pleasure in things so I feel sad all the time. 

Re: |So trapped (why I want to go off my meds) for carers

@Lilyq yes that inability to feel is awful. The intensity has gone..... I am one step away from going off the meds. It is either meds with sh, being miserable etc or no meds and go lose my mind.

Re: |So trapped (why I want to go off my meds) for carers

Here is another side I have recently faced. 

I recently started a relationship with a new man. He is one that believes “depression isn’t a real thing” or “just a sign of weakness” ect... I was gobsmacked with his view on this subject... though I respect his views as not all of us have been raised with an understanding of MI or have been educated on the matter.

So he bought up in conversation that he doesn’t believe I need to be taking all my medication to help control my bipolar, depression and anxiety. He has never witnessed me unmedicated or either manic or major depressive. This topic was bought up in multiple conversations. I was getting frustrated and went cold turkey for a week. This was not pretty, I was on a emotional roller coaster plus the added bonus of withdrawals, cold sweats, major head aches, blurry vision ect. This man soon decided “yeah maybe it’s best you take you medication each day” 

I think for some people to understand they need to see you at your worst to appreciate you at your best.

We have a long way to go on educating people about mental illness and break the stigma attached with it. So many suffer in silence when they don’t need to.

Re: |So trapped (why I want to go off my meds) for carers

Hello @Myla, @greenpea, @Lilyq, @s-jay, @Former-Member

thank you my super @greenpea Heart

yes when i met mr shaz he was on only one meds which was not working for him

after being in hospital he is on 3 meds now

I totally understand what you said @Myla below

I was getting frustrated and went cold turkey for a week. This was not pretty, I was on a emotional roller coaster plus the added bonus of withdrawals, cold sweats, major head aches, blurry vision ect. This man soon decided “yeah maybe it’s best you take you medication each day” 

yes my mr shaz goes off them for a week and then has to take them again

I love to get off my meds for my  physical problems but who know what will happen to me

so mr shaz is back on them but taking extra now and then

Re: |So trapped (why I want to go off my meds) for carers

@Shaz51@Zoe7@Myla@Lilyq@s-jay@Former-Member I took my meds tonight I am not sure if I will take them tomorrow it will be a hour by hour thing. Wishing everyone a calm sleep tonight, greenpea

Re: |So trapped (why I want to go off my meds) for carers

Hi @greenpea

I really appreciate what you are saying.

My beautiful daughter is trying to come of her meds.

she is currenty an inpatient and is about to start a course of ECT tomorrow.

She tells me she looks in the mirror the same as you and doesn't see herself anymore.

We are very interested in alternative approaches.

My daughter has managed her Schizo affective condition for years without us realising (and yes unfortunately the path she chose to manage her symptoms ended up with a major psychotic episode) but it revealed her struggle to her family and friends and I am feeling positive that life will improve for us all now we know. I love sitting on the ward with her, listening to all the stories around us. The mind is a beautiful thing and I feel grateful to be part of my daughter's journey. Best wishes for you.

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