Hopeless

How do you come to terms with the fact you'll always have symptoms? I'm realizing I've been "sick" in one way or another for over a year. I'm good at hiding it but I've been jumping from one delusional/paranoid thought to another. That's on top of my normal anxiety/paranoia of people and being left alone. I've been on high AP meds most of that time. I don't want to live like this. I don't know how to fix me. I'm actually scared. I don't know if I'm ever stable. I'm better then I was 5 years ago. Even then I was better then I was as a teen. I don't want to change my meds and take the chance I'll be really bad. I don't know how to be honest while paranoid and it looks like high anxiety. How do I accept the way I am or how do I change it?

I have said this before, you need to be honest with your health care team.
You are still young and have a full life ahead of you.
These are things to talk about with a therapist.
I am sorry you are so anxious.
Try to remember that we are under covid restrictions.because there is a real threat to catching the virus or the flu or any number of air borne bacteria.
The disease will run its course and they will be having a vaccine as soon as possible.
much love to you
bizi

I am really honest when I see it. T names everything anxiety. I name everything psychosis. I do have to tell her my weekly rating scale is off. I only talk about the things that effect my relationships. Not things that just thoughts. I may mention it later but just off handed.

My course has been the opposite of yours. Hid it and somehow worked until about age 40. 56 now. Had a few stable yrs while longterm IP, but last 3 yrs, sicker than ever been. Much.

I accept I have an incurable brain illness that very little is known about. I make small goals. Live in the present. And trust that God has my back I haver sure tried to have His.

Hugs.

You should mention the thoughts too. I once thought there were people in my walls. Pdoc took that seriously!

How do you choose what thoughts to talk about? I've always only talked about the ones that seriously effected me.

I try to tell him basically everything, if time allows. He can only help me if he knows what is happening. It is almost impossible for me to identify when I am hypo. He knows this, so, we are trying to do some stuff to help me with that.

I also worry a lot that it will never get better. I'm still young as well and I have a lot of plans and things I want to do that I've had to postpone (indefinitely) because of this illness. I try to push through and do all these things the best I can, but it's extremely frustrating, and some things I just can't do at all for safety reasons. It makes me feel like I can't be who I am, and I may never be myself again. It makes me feel like a sort of hollowed-out "ghost."

Whenever I bring this up with a therapist or Pdoc, usually they just try to reassure me by saying that BD is very treatable, you just need the right meds, you can go into remission, etc. I find it hard to really believe that. I certainly haven't found the "wonder drug" for me yet.

I make it a goal not to worry too much or look too far into the future. I roll with the punches as they come. Life is constantly changing and many find balance at some point or another. Also, some patients find that symptoms decrease as they age like the volume is somehow turned down a bit. Sometimes diagnosis change. Mine is still evolving. I learn what I can each time and see how I can use the information to balance and stay as well as possible.

Thinking about it constantly reinforces the issue. It wires your brain to believe there is no other outcome. Being honest and present in the moment without predefining the future allows you to find a healthy path currently while remaining open to other possibilities down the line.

Doctors and therapists label us and give us information about what to expect. I understand why that is necessary. But... It is one thing to believe you will need to be vigilant towards looking for issues for life and another to believe you will constantly have issues. I hold hope for everyone here that with a balanced lifestyle they can enjoy periods of stability from time to time.

Instead of focusing on what you cannot control, perhaps start strategizing on what you can control. You can control what and how you eat. You can control whther or not you're doing something physical each day. You can make lists of activities and projects to add value and stay busy each day. You can do research and learn about your illness to get better insight. You can be honest in therapy and do the work to process some of your fears.

All of these things help you to lessen the effects of the disorder. It is like having a flashlight in the dark. The hardest part is overcoming your mind enough to force yourself to do it. That's a real battle and sometimes we lose, but it doesn't mean we shouldn't try every single day. You are worth the effort to fight for yourself.

And since the topic of telling your therapist your thoughts came up... You are approaching it like you are the best person to decide what is impactful and what isn't. You determine how much it affects you in the moment and only share the pieces you want. However, your therapist and doctor need the complete picture for two reasons. First, the types of thoughts you're having are symptoms even if you are able to fight them. They help your team know what kind of patterns your thoughts and emotions take. Knowing that can help them better formulate a custom strategy for you. And two... You are not in the best place to decide what is truly impactful and what isn't. Your insight is off a lot of the time. Stop trying to do their job and be a good teammate and give them what they need to do their job effectively. You may think something isn't important, but you have no idea what kind of long term effects the things you believe are trivial have. Let the experts do what you are paying them fully to do. Invest fully in the process for a long time and then determine whether or not the meds and therapy are helping. It is pointless to assess their efficacy as not working when you continually only give them a small piece of the puzzle to work with. They can only treat what they know about.

You say you're hopeless. I am infinitely hopeful for you. There is tons of potential for you to take more control over your situation. You have so much room to grow. There is so much you can try. I hope you can see that one day.

There is so much you can try. Like what? I've been in treatment for 14+ years. How do I give them a complete picture? I'm honest as I can be. next week I have to tell them I'm jumping from one thought to another for an extremely long time.

Like making a strategy for yourself and pushing to stick to it. Like holistically caring for yourself each day. So that might look like eating proper meals every day and getting the right amount of nutrition your body needs to process the chemicals from the medication. It would also include drinking lots of water.

It might include exercise every day of some kind. There are millions of ways to do this. The goal is just to get moving every day. That also helps your body process the medications. There are tons of videos of trainers who do all kinds of routines on YouTube. Following along might help you feel less alone when you're by yourself. Some videos only take 20 mins and offer a nice cardio session or whatever you like.

It could include finding spiritual practices that help you feel more connected and balanced. You could do yoga or meditate or connect with the Earth by going outside. There are infinite options.

It would include finding activities to fill your day and stay active. Cleaning, art, writing, small projects around the house, reading, etc.

It could include doing research on schizoaffective disorder or bipolar disorder and the various treatments for it. Reading books or doing workbooks with information on how other people in your boat survive and learn to thrive.

It includes proper self care and maybe even finding ways to reward and pamper yourself when you can.

It includes finding things you enjoy doing and adding those in a little each day. Maybe you learn to love to cook new things for your family. Maybe you learn to garden. Maybe you get into fitness. Whatever. Just keep trying new things. My hobbies change all the time.

It includes time to just relax and be with your music or whatever you do to escape. Everyone needs a little of this everyday. The goal is to time box it and not let it be all day every day.

It includes reaching out to others and letting them support you. You told your family about your diagnosis. That's a really good start. Maybe you make a plan to check in a few times a week or something.

You are already doing bits and pieces of all of these things. I am suggesting you try putting it all together. Make a schedule for yourself each day and push yourself to stick to it. Change the approach from constantly using coping skills to simply managing each day with a holistic and balanced strategy. It puts less pressure on the meds to control everything and more power in your hands.

As for being honest, yes you are always honest. You strike me as a very honest person. You also hold back. You withhold anything you feel isn't causing a huge issue in your opinion. You also hold back anything you think they will suggest putting you in IP for. While you do not lie, not giving that information keeps them from being to help as much as they could. If this description of your pattern seems off go back and reread some of your past threads.

I'm essentially saying you have lots of room to grow into a life where you live every day instead of simply coping just to get by. It may feel like work at first, but a full life can be very enjoyable after your body and mind get used to it.

Check out Yoga by Adrienne on youtube. Totally awesome and free!! She also does meditations. 700-plus videos.

Fern, thank you for posting this!!!!
You are a gem!
bizi

I'm sorry it took me so long to reply I'm having trouble reading. and concentrating.

Eating and nutritionist has always been hard for me but I am working on it. I do need to exercise more. I use to spend my summer in the pool and I haven't swam in 6+ years. spiritual practices are not my thing but I can try meditation again. I am generally active but I get tired of distracting myself from my issues. I'm not a reader but I do watch everything on youtube about BP/SzA/SZ. I really have to get better at self care, I don't have anything I enjoy besides coloring but I need to learn to draw and I'm dreading it. I have to go back to the 6 hours of productive things a day. I'll try pulling it all together.

I'm the sane one of the family. I can't burden them with my issues. They have their own problems. I'm not honest with them and honestly they're not safe to be honest with. My dad thinks diet can control any medical issues and my mom who ... well she's mom.

I don't try to with hold it just doesn't occur to me that it's weird. Everyone IRL says I have good insight. The only one who was aware of my mess was old T because I wrote down everything unedited for her. There was only one time I didn't say something to her because I knew I was unsafe. Most of the time I feel like I am safe, and I should be trusted. I do say things after they pass if it something that could have lead to IP. I need to stop that. I loose sight that getting better is the goal,

I don't know if this has any cohesion. I'm sorry if it does not.

bpcyclist- I'll look her up.

It has great cohesion. You're a much better communicator than you give yourself credit for

You definitely have all of the pieces. Putting them together is the next step. Don't let it feel daunting. Make it easy by spending 30 min or so writing out a menu of activities for yourself to choose from today. Try not to worry about getting to all of them. Just focus on doing them continually throughout the day. Switch when it feels good.

Your Dad is perhaps off in his thinking diet is a cure, but he is right that it is a big factor. The keto diet has been successful for patients with schizophrenia. The Mediterranean diet has shown success for depression and other issues. A diet rich in healthy fats, lean proteins and lots of veggies would be good. Processed food and food prepared outside the home would be things to avoid. That's if you're wanting to go there. For now maybe focus on several well balanced meals a day or if you prefer, you could do many small snack size meals. The goal would be just to keep your metabolism processing the chemicals from the meds at regular intervals. That helps with stability.

All families have limitations. Mine included When I suggested checking in I meant more just call and talk small talk just to give yourself regular human interaction. I know talking is hard for you sometimes and you like to withdraw. Regular chats about everyday stuff can help get you out of your head more amd help promote balance.

As for spiritual, it doesn't even have to feel spiritual. Watching a sunrise or sunset is spiritual. Sitting in the grass is spiritual. Listening to the birds. Listening to meditation music even if you don't like meditating. There are great videos on YouTube.

Our spirit connects us to everything that makes is human, everything that is smaller than we are and everything that is larger. You can go tiny or universal. There's no wrong way to do it. Its mostly just about slowing down and getting out of your head for a bit. Its about appreciating your place in the world and honoring others.

Learning about the disorders from videos is a great way. I love Dr. Tracey Marks. She is awesome. I also like a channel called Therapy in a Nutshell. She's a therapist and a great teacher. Check those two channels out if you're interested. Lots of helpful information and techniques.

Giving all of the information is important, and it will come in time. Trust is hard and even when we trust we sometimes withhold things for various reasons. Just give it your best effort and reflect afterward to see how you did.

In all of this strive for progress over perfection. Each step forward is a victory. Each step backward is an opportunity. We are all learning. Trial and error is the only way because there is no one formula that works for all and what works now may not work in the future. Be kind to yourself and push yourself.

You have tremendous strength to cope as long as you have. Hopefully you can see through my eyes a bit and see there is much to be hopeful for.

Oh and those yoga videos bpcyclist mentioned are great. She's so calming and I love her dog