Struggling to stay on medication

[Jacqui51]

Hi. I have not been on any forums for quite a long time. Things have changed,  some stayed the same.

I am hoping someone can help. I have been stable for a while using medication prescribed by my psychiatrist.  They have worked hard to help me find the right combination that doesn't have major side effects.  They listen. 

My problem is I hate taking medication.  I have previously discussed this with my psychiatrist and understand it links to previous bad experiences with medication and being over prescribed.  Despite this I am taking myself off meds again.  I am confused why I seem to want to self harm in this way. 

One part of my struggle is dealing with DID, it seems a part of me does not believe in medication. 

It does not help that my insomnia is bad, my work demands are through the roof and family are challenging. 

Any ideas?

[jaz28]

hi there,

i am sorry to hear you have struggled with mental illness and taking your medication. it is good to hear that you have been stable and found a psychiatrist who listens.

does your psychiatrist know that you will be taking yourself off medication? if not, this is something you should discuss with them heavily. there might be side effects of coming off the medication to be informed about, among other things that your psychiatrist can provide the most informed advice on.

in my opinoin, being on medication that makes you feel better can make you feel like you dont need to take it anymore. but, of course, you feel better is because of the medication. in any case, it may not be sensible to come off the medication without professional medical advice because your adverse symptoms may return and you could become unstable again. its easy to forget the feeling of being unwell when you are well again. these are risks you need to weigh up, and decide what course of action you will take.

if the medication does not have any bad side effects and makes you feel better - then why do you want to come off it? i can understand that previous bad experiences can cause you to feel uneasy, and im sorry those experiences happened, but i would suggest working with your psychiatrist to try and move past that. 

taking medication is a personal choice, but make sure to weigh up the costs and benefits of coming off medication that works, and inform your psychiatrist when making this decision.

all the best,

jaz xx

[indigo22]

Hi Jacqui51,

Welcome back, I hope we can give you some support with what you are going through.

It sounds like your team are looking after you which is really good to hear. The problem appears to be in the form of self sabotage relating to past experiences. You are dealing with a lot and I am sorry to hear you are struggling at the moment.

One thing I would like to suggest that may be helpful is looking into Somatic Experiencing, there are a number of books available on this by author Peter A Levine. The reason I mention this is that past experiences of an emotional nature can become trapped within the body, if you can overcome the difficulty you feel is getting in the way with your meds through this type of therapy, it will go a long way to helping you to not self sabotage. Have a chat to your team about it also, they may have an awareness of this type of therapy already. Personally I have found reading about mental health issues helps me understand myself better and there are a number of new therapies that may be of help to you.

My advice, dive in and learn about them and see what strikes a chord.

Take care,

indigo22

[Jacqui51]

Thank you. I will check this out and if able ask my psychiatrist about it. 

[Jacqui51]

I somehow lost my reply. My mistake   

[therising]

Hi Jacqui51

So glad to hear some things have changed and you have a very conscious psychiatrist that listens to you carefully and thoughtfully. Wondering if your psychiatrist can pinpoint what the insomnia is about. Sounds like something definitely worth tackling, as deprivation of good quality sleep can impact so much in life, including tolerance levels, mental and physical abilities and health and so much more. I feel for you so much, having to suffer through insomnia. It's such a brutal thing. Btw, would be so much easier if family could take more responsibility for their behaviour at times, the kind of behaviour that brings with it so many challenges, on top of the ones we're already trying to cope with.

Sounds like you may have hit the nail on the head when it comes to the reason for wanting to go off the medication. If there's a part of you that doesn't want you to be on meds, the question is 'What part of you is that?'. Maybe that's something your mental health practitioner can help you get to the bottom of. Could it be

• a part of you that typically acts as a saboteur?
• a part of you that is into everything natural, while insisting you explore natural ways of coping with DID?
• a part of you that just doesn't like the side effects of meds?

or maybe it's some other part of you. If you can get a sense of the dialogue which comes with the urge to go off meds, that might offer some insight. Perhaps the saboteur sounds like 'Everything will be fine, trust me'. If there's no solid plan to rely on and trust in regarding the way forward, that's definitely no way forward. If it's some natural part of you that's insisting, perhaps a compromise could be reached. Kind of like 'I won't carefully come off any meds until I've done an absolute stack of research regarding the way forward without meds'. If it's the part that doesn't like the side effects (whether those side effects involve insomnia, a depressing lack of energy or something else), the meds may prove to be better than nothing until an even better one is found. So, again, a compromise if it's that last one, 'I promise I'll keep searching for a better med while find ways to manage this one'.

Maybe it's worth discussing with someone on your professional care team 'Can we work out which aspect of me wants me to come off the med/s and why?'. I imagine this would need to be done very carefully, tapping into a specific part of yourself, with someone guiding you into it and then guiding your back out of it once you have your answer. Might sound strange, but if it does happen to be coming from a part of you that wants to explore a more natural route, would be interesting to hear exactly what that part of you has to say in the way of ideas.

[Jacqui51]

Thank you. A lot to consider.  The conversation linked to medication is mixed. At times someone is angry and frustrated as it feels as if we will never be whole. If medication is to be our life is it worth it. At the same time I hear a comment from the previous psychiatrist  'Diabetics need medication so do you.' 

Sometimes I believe it is a saboteur who does not feel this person has any rights to be happy but at other times someone is crying deeply hidden inside.  

Working with this psychiatrist and due to medication the parts are much quieter perhaps subdued is the word. 

I  believe I could talk to him about this but am struggling.  I  fear being a waste of time. He has a waiting list a mile long. 

Not surprising as he is good.

I do know the cause of the insomnia.  I  have not slept properly since 3 years old. Trauma.

At times my sleep improves for a while but then decreases. Just now really bad. Ran out of one medication that does help at times. I will ask for a script and try to take it. 

I  struggle regarding the DID as for many years I have swung between accepting and rejecting it. Evidence forces me to believe the diagnosis most of the time. So many gaps in my life, places and people I do not know, missing blocks of time, events I have no memory of, confusion re how old the person is. I  have talked a little with him about this. 

My care team is just the psychiatrist.  There is no one else. For many different reasons I am isolated and do not and cannot connect.  

I am trying to find a way to reach out but terrified.  

My next appointment is Thursday.  Perhaps I will be able to open up regarding all of this. 

The block is me not anything he has done or said. 

It does not help that my workload is phenomenal. Add to this my partner has been diagnosed with shrinkage of the frontal lobe. Symptoms of Alzheimers and symptoms of Parkinsons but not actually diagnosed as either. It hurts so much that the person I fell in love with has changed so much. A miracle worker with IT in high level jobs who now struggles to remember how to send an email. 

His frustration,  despair and more adds to my challenges.  I carry the load financially as we lost 12 years when he first became ill with a previous condition and his being unable to work for over 17 years. At least next year the pressure should ease when I can pay off our mortgage.  

Sorry I  am so negative.  It's a bit difficult tonight.

[Jacqui51]

Hi Jaz I did respond but lost it as shared below.  Your words were really appreciated.  Just too difficult to write my thoughts again.

[therising]

Hi Jacqui

I don't see you as being negative, not at all. What I see is someone expressing incredible struggle when it comes to what sounds like a collection of overwhelming challenges. You have so much to manage. I'm glad you've got such a great psychiatrist. It must have been a relief to have found him. You are definitely worth his time, no matter how much of it you use, even if you see time with him as your reward for having managed on your own through so many incredibly tough challenges over the years, since such a young age. If getting the medication right is part 1 of your journey, what would you like part 2 look like with him? I hope you gain some direction during your next appointment.

What you and your partner face, with his diagnosis and the side effects, is incredibly sad. To lose a person bit by bit comes with so many challenges, some unexpected. I found with my dad (who has progressive dementia), I've changed in the process of him losing himself. While it makes sense that I parent my 20 and 18yo, as I'm their parent, to bring that part of me to life on occasion when I see my dad can be a challenge. To get rid of a lot of mental programs that dictate 'You can't speak to your parent like that' (like with firmly dictating what he needs to do in the way of guidance) or to help him to the toilet when we go out places together (as he can't manage alone) is a challenge. To imagine how he feels with his once little girl doing such things is a challenge. To know I've lost parts of him that I can speak to about life when I was a kid is in some ways a grief ridden challenge. And to grieve with him when he expresses how tough it is to know he is losing his mental abilities is also a challenge. I imagine for a partner of someone who's going through this it would be even harder, based on the nature of the relationship they've shared for so many years. My heart goes out to you.

I wish you had the financial freedom to be able to work less, so that you had the time to manage what is already so challenging. You are an amazing person Jacqui, a truly amazing person who deserves all the time in the world with someone who can guide you, such as your psychiatrist.

[Jacqui51]

Thank you so much for sharing your experiences.  It is difficult as you do understand.  

I try and see my life using the glass analogy and have to laugh when I think of one version I now like. Glass half full or half empty. You are missing the main point, your glass is refillable.  😁. Ever since reading this, in relation to wine I think, I  have smiled when hearing the example. I try to remind myself that when exhausted I  may be empty but like a glass I can fill up again. It becomes so difficult though. When I last wrote on the forums around 2 years ago I was drained even more than now. I had a suicide plan at that time I was working towards. My psychiatrist was able  to get me to hold off while he was away and through working with him over the next few months I was able to move past the darkness. My glass partially filled. 

I  am working tonight yet again after finishing for the day officially.  So much I need to complete.  I feel guilty for taking the few minutes to read the forum and respond.  

I  am coping a little better today as some sleep last night. Perhaps I will be able to talk to the psychiatrist tomorrow. 

I realise I have linked this to your earlier post. It is in response to your sharing below. Again thank you.