Lived Experience Forum

[greenpea]

@Eden1919  hi hunny just have your meds.  it is the only way to get them to leave you alone i know first hand. i know it is awful but if you dont they will put you back in hospital and you dont want that.

[Krishna]

Hi @Eden1919  I agree with @greenpea   Community treatment orders are usually put in place if the patient is non compliant with their medication. My daughter has been on CTOs in the past due to this reason. Sadly it is the reality that medication is the best chance she has of leading a somewhat calm existence, the alternative being chaos and hospitalisation. I think it would be a good idea to attend your tribunal hearing and express your concerns about the pain of your injections. You have every right to air your grievances for the tribunal to take into consideration. Good luck 🙏

[underthebee]

Hi @Eden1919 

So sorry to hear you're going through all of this. I appreciate how difficult it must be, and it's very brave of you to share your experience with us all!

I agree with a lot of others that voicing your opinions and concerns at every stage is a great idea, to keep that constant communication going.

I'm sending all my support in the meantime, and am sitting with you.

[StuF]

Hi @Eden1919 

Just wanted to say I'm sad to hear your treatments are so tough. Wishing you strength to get through and a voice (heard) to help moving forward

[BPDSurvivor]

Hi @Eden1919 , I agree with what many agree saying @greenpea  @Krishna ,

Over the years, I’ve seen how scary it is when you haven’t taken your meds. I clearly remember your fear, your inability to sleep, the paranoia etc. I hear how traumatic a CTO can be, and I hear how painful the injections are. Yet I’m also concerned about your well-being and your mental health state when you don’t have your meds.

 I’m saying this because I care. 

[Eden1919]

thank you everyone for the replies, I have told my treatment team about the pain of the injections many many times and they dont care they just say "well that happens take a painkiller" and then even at the tribunal they dont care they only listen to what the doctors have to say so voicing my concerns is getting me nowhere sadly. 

@greenpea  i know they wont leave me alone if i dont take them and i have been taking them but it hurts and i am exhausted and i am just sick of it i dont like that my only option seems to be do what they say or be punished with a traumatic hospital stay. i am just so frustrated and i dont know what to do.

@Krishna @BPDSurvivor  i am not saying things are great off the meds but things are also not great on them i am tired all the time they hurt i have gained a huge amount of weight from them that is now causing other problems like severe back pain amoung other things and most of the time i dont feel good. i am also struggling to take care of myself and am lucky if i manage to shower and brush my teeth once a week i cant keep my apartment clean i am only managing to feed myself once a day and even though i am hardly eating the weight keeps going up. i want to sleep all the time and this isnt a good quality of life at all. so to me the meds dont make things better they make them a different kind of bad and idk which kind of bad is worse tbh. 

[greenpea]

@Eden1919  i am miserable because of the meds i am on for schizoaffective disorder and heart failure and their side effects but no that if i dont take them i will be worse off.  it is the choice of two evils and the meds win.

[Eden1919]

@greenpea  i am sorry you are also suffering on the meds. i also recently was tried on a medication that made my heart inflamed and put fluid on my lungs and could have made me die if they hadnt stopped it but i still months later am not fully recovered from the effects of that med. the thing is idk which evil is worse. the meds evil or the off meds idk which i think is worse i know other people seem more scared of me being off meds but idk how i feel like being on meds is absolutely worse for my physical health but mentally idk it is just so hard why do both options have to be bad in the first place. i hate this. 

[greenpea]

@Eden1919   all i know is i stay out of hospital if i am on meds and that is a huge bonus to me.  in saying that you should have the right to say no to meds.

[Krishna]

I’m sorry @Eden1919 that you’re experiencing this. Seems you feel stuck between a rock and a hard space. I know the side effects of your depot cause a lot of what you’ve described and I simply wish there was a better solution for you. I still think you should attend the tribunal and have your concerns heard. They may be able to change your meds or lower the dose but don’t give up on being heard. My daughter was the same for a time but now on different meds and them combined with ECT is managing her weight, taking care of her personal hygiene and eating more frequently and now complying with her meds so her CTO has been lifted. Don’t give up hope 🙏