I have run out of hope

[HopelessLes]

Background info:

M, 40y/o. I live with my Mum; we both have complex health issues that are NOT being adequately managed by our doctors.

*I had to pare this post down to 2500 characters from over 7000. A LOT of detail has been lost*

I am suffering from a condition that appears likely to be Narcolepsy type II. I also have several other physical and mental health problems.

My main symptom is a permanently reduced level of wakefulness/alertness. This has gradually worsened over 27 years. Until two years ago it was relatively manageable.

Last year a Sleep Specialist suddenly stopped the only medication that had been helping me a little. She COULD have done this in a kind and understanding way but she deliberately made things as traumatic as possible.

I had already been suffering from Demoralisation Disorder due to previous stressful incidents with doctors; the incident last year has caused full-on PTSD. I CONSTANTLY relive that situation, dozens and dozens of times a day. And it gets stronger and stronger...

I am supposed to be caring for my Mum, especially as her health is deteriorating also, but she is looking after me more and more and it is draining the little health and strength she had left. I feel so TERRIBLE. Before Dad passed away, he made me promise I'd look after Mum. That was the only thing he asked of me. And I can no longer do it. I am a failure. An absolute failure.

The final straw came last week when I had an appointment with another Sleep Specialist to get the results of my recent Sleep Study. He gaslighted me and said there's nothing wrong.

I give up. Nobody listens and nobody cares. Nothing works. I can't get any answers, I can't get any help.

I have tried nearly twenty antidepressants with ABSOLUTELY no benefit from any of them - probably because my problems are neurological and psychological, not psychiatric.

I've been feeling suicidal and don't feel very supported by my healthcare professionals.

I cannot tell my Mum how I feel as she is very religious and I know she would not react well.

My current state of mind is ABSOLUTELY hopeless. All I want is to feel OK again. But every day things get worse... I have lost everything. I used to be smart. I used to be good at solving problems. But not any more. My brain is dying more and more each day.

I do not understand why I can not get help. I have tried SO HARD, for SO LONG... and all for nothing. I am done.

[HopelessLes]

Thanks for the replies. Sadly things are much worse now 😞 I will be in isolation until I have 100% recovered from the flu, which will be several weeks minimum.

I told the nurses how I'm really feeling, and they have taken away ALL my belongings except my phone. I'm not allowed to shower or brush my teeth or change clothes. Still have not been seen by the doctors.

[therising]

That's so frustrating Les. Wishing the doctors would hurry up and fill you in on the plan for the way ahead. Hoping they have a really good one, something for you to look forward to. If waiting is one of the things that's making the depression even worse, that's something they somehow need to manage. Telling them they need to help you manage the waiting is important. Making sure you have basic things to look forward to every day is important. If bigger meals are something you believe you'd look forward to or double the dessert on the tray, let them know. Working in aged care and with us back in yet another lock down this week, meals are a huge deal to the residents where I work. The basic things start to mean a lot. To go the extra mile by giving people the best of the basics is important.

To manage as well as you have by letting the staff know how deeply impacted you now are deserves something in return. While ensuring your safety is everyone's #1 priority, they can't simply just keep taking stuff away from you without offering something in return. At least you have your phone. Did you manage to get someone to charge it for you? If your phone's your thing for managing your mental health at the moment, they need to keep it charged for you. Do you have access to a television?

[HopelessLes]

Thanks therising

Yes, it's incredibly frustrating. My demoralisation is now absolute: I have zero hope left. Even IF I could resume ECT straight away, too much damage has been done and I can see no way forward. I do not see any possibility for me to recover now.

Having to wait an indefinite time and with zero communication is absolutely the worst possible thing for my depression at the moment. But they either don't understand or don't care.

Someone arranged for a peer worker to come and talk to me but the nurses turned her away.

I'm out of isolation and in another different room (the 8th in 7 weeks...) but haven't heard a single word from the doctors since Wednesday. I won't be seeing them again until at least Monday, and that will likely be postponed as has happened nearly every week so far.

A lady who works as a sort of patient advocate came and saw me a few days ago. She said she'll go in with me to see the doctors next time; however that will obviously depend on her availability. Hopefully it will work out...

The charging of devices is done by the nurses. It's generally not a problem, except my phone only lasts a few hours, and then takes all night to recharge. If I fall asleep without handing it in, I can't use it the next day.

When I was in isolation I had absolutely nothing except my phone. No books, no TV, I wasn't allowed out of the room at all. They took all my clothes and toiletries - I didn't even have any hand soap!

[Karen0901]

There is always a possibility for recovery. I totally understand that feeling but it's wrong.

The best way to start recovery is to believe in yourself and your ability to find your way through. Life is hard sometimes but the good times are always round the corner. If you search for them. This is what I repeat to myself when I am really struggling. It feels like a lie during those times but when I am on the other side, I realize again that it's true.

You mention you have nothing to do. This is a good sign. When I have been at my worst, there is nothing I want to do. Nothing I can focus on except worries and feeling sorry for myself. You can focus on the things you enjoy. Start there. Think about the good things you have in your life. Talk to the nurses. See if they could organise something to do.

Have you talked to your family recently? Talking to your Mum might help you. In my experience, they allow for outside calls.

[therising]

Hi Les

It sounds like you're facing one of the biggest challenges of your life and desperately need someone to advocate for you, such as the person you spoke of. You need someone who can demand, in some way, 'You really need to give this person something because this is how much they're struggling... You can't just leave them twisting in the wind like this, it's just making things a whole lot worse'.

As the old saying goes, the squeaky wheel gets the oil. Getting someone to make a lot of noise for you, if you don't feel able to do this yourself sounds like it's a must at this point. The challenge sounds like locking the advocate into a solid appointment time. Have you asked them how they're going to manage this? Them saying something along the lines of 'I'll see what I can do', just doesn't cut it. They need to give you a firm plan Les, even if that means finding another advocate who has the time.

Having been largely a people pleaser for so many years, there have been occasions where I've come to channel what I thought was the worst in me. You know that part of our self that's intolerant and a bit of a ranter, who we suppress so as not to upset anyone. While I've gone through times of feeling great sorrow for myself, there has been the odd occasion where the intolerant ranter has suddenly come to life. I realised, this part of me is not the worst in me, it's the self advocate in me. It's the part of me that may at times dictate 'This is not good enough. I can't stand this anymore. You people need to get your s*** together and do better than what you're doing because, based on your performance, you're serving yourself more than you're serving me!'. This part of me can have a bit of a potty mouth when she comes to life but when I channel the sage in me at the same time, it's the sage that keeps the language under control. The sage in us may dictate 'No bad language if you're commanding respect'. I think when we're in 2 minds about something, it's important to carefully choose those 2 minds. If they're the right ones, they'll work well together.

I imagine you're in 2 minds yourself at the moment, perhaps one is the mind that dictates the sorrow you're feeling and the dialogue that comes with that and the other mind might sound a little like 'You can't just lie here and wait for them to do something, when the waiting's slowly destroying you'. Is there that part of you that's insisting you lead people to show you more time, consideration and respect?

[HopelessLes]

Thanks Karen0901

It's so hard to feel anything's worthwhile when all I can feel is hopelessness and misery and despair. My loss of positive thoughts and feelings is so much worse than ever before. My brain cannot think positive things on its own - something is seriously wrong with my neurotransmitters. I know it's possible for things to improve, but I only know that logically. Until I find treatment that works, I am not able to feel anything other than negativity.

I was bored and frustrated for a few days but the boredom gave way to emptiness and pointlessness. Now I'm out of isolation but I haven't been able to go back to my previous activities (jigsaw puzzles, watching TV) as their meaning has gone. It's just a part of the Demoralisation process... Eventually, after enough disappointments and setbacks, hope dies and can not return.

I talk to Mum on the phone at least once a day, usually twice. When I was feeling a little more positive (before the ECT was cancelled) I spent a bit of time calling several people and it helped me feel slightly better. But now there is no point. My brain is broken, my positivity is gone. Everything is a massive effort, and I get zero reward. I'm too broken to fix. If the ECT hadn't been interrupted I would have had some chance of recovery - it was already starting to work! But now that's gone and I have no idea when - or even IF - I'll be able to resume treatment.

[therising]

Hi Les

As you mention, from a logical perspective you know things can improve yet from a practical perspective and based on your experience you believe that's impossible. When people around us in life are only coming from the logical side, all they can see is that side of things. It can be so frustrating trying to lead others to understand what appears logical is not always that easy or straight forward.

When it comes to what's logical vs what's practical, I think of my son who's in year 11 currently sitting exams. Logically he should be able to focus on studying for exams but he can't based on how his brain behaves. Maintaining focus can be incredibly hard for him. While some may say it's ridiculous that he can't manage his imagination and sense of wonder more productively, it's exactly these factors that impact his focus. As the experts say, for some with high functioning autism, the part of the brain responsible for imagination and a sense of wonder can be so dominant that it overrides the part of the brain that needs to exercise greater focus on other things. Now, if all school subjects were taught through the imagination in inspiring ways, he'd be a straight A student, without a doubt. Unfortunately, the Australian education system is not perfectly designed for highly imaginative people. Btw, the teachers students love are the ones who typically teach through the imagination. They make learning more exciting.

Another system that's not perfectly designed is the one set up for people with severe debilitating depression. While it's basically good, like that education system, it has its obvious flaws. I'm not saying it's a bad system, just one that can offer some major challenges for those suffering. Being a major feeler Les, someone who feels deeply and easily, you're feeling these things. If someone put you in a system that was mind altering inspirational, chemically impacting and naturally stunning, I imagine you'd feel this too. I'm not talking about a basic level of inspiration, what I'm talking about is a shocking level of inspiration that leads you to say 'Oh my goodness, this is absolutely unbelievable! I had no idea I could ever feel this way'.

My advice to any mental health practitioner would be 'Be careful with how you lead a feeler to feel (someone who has the ability to feel/sense a situation). They will feel that situation intensely. Carefully maintain elements of hope and they will feel that too'.

[HopelessLes]

Thanks therising, you have a very good grasp of how things are! You have helped me understand things a little better. I just wish I could work out how to apply things better to my situation.

I had another big disappointment: the nurses told me last night to be ready for ECT this morning. I had a stressful, sleepless night, just HOPING it would go ahead... But my name wasn't on the list this morning. I have to wait (at least) another 96 hours in severe emotional distress that's now even worse... The medication they added last week has done absolutely nothing. I asked for extra short-term medication but haven't received even my usual dose. I don't know what to do... 😞

[therising]

Hi Les

Sounds like you're being put to the test quite a bit Les. How do you think you'd go hassling people for answers or results? Personally, I can feel terrible doing this at times, like I'm putting people out but if there's one thing that will always trigger me to harass, nag or hassle people (whatever we choose to call it), it's complete and utter intolerance. Not just talking about the kind of intolerance that can lead us to the brink of anger or pure frustration, I'm also talking about the kind of intolerance where we just can't tolerate how depressing something or someone has become. Sometimes I may even cry my intolerance out to someone. For example, in a state of tears I could cry 'I just can't take this anymore. This is ridiculous (worthy of ridicule). I'm struggling to manage how depressing things have become'. Our expression of intolerance can be felt and expressed in so many different ways.

In you asking for your usual short term medication, could sound a little like you saying to a nurse 'Do you know what's happening in regard to the following medication I was promised... I need to know'. If you get no results, say the same thing to the next nurse and the next and the next until you get the result you're after. If someone promises the doctor will see you when he can (about that med), nag 'When will that be?'. Then ask the next nurse and the next and the next until you get the result you're after. They might even demand more from the doctor (just to shut you up), pushing him to come and see you. Whatever works 🙂 Be prepared Les. You may be labelled as 'Difficult' or 'a challenge to deal with' or 'a pain in the butt' but who cares. Whichever label people choose, wear that label as a badge of honour. Relabel or reform that badge into 'I'm a results man'.

Would you say this situation is testing you to see if you can be more demanding? Are you being too easygoing while you're suffering so deeply at the same time? Squeaky wheel Les. Often, it's the more demanding patients who receive the oil (attention). I think as long as we're respectful in the way we demand things, no harm done.

You never know, you might decide to become quite demanding and start requesting appointment cards for the ECT date and time. Would be handy to have, so you can show them how they failed to keep the appointment.

[HopelessLes]

Thanks so much therising.

I'm in the difficult position of being in an incredible amount of psychological pain, while also being openly told I'm being impatient and inconsiderate. I just WISH there was some way for other people to feel exactly how I'm feeling. I doubt they would be able to concentrate enough to think of others at all, let alone think about patience and consideration... They would be wanting out of the situation immediately, whatever the cost.

Maybe I'm wrong, maybe other people COULD handle it well... but I doubt it. And I'm certainly not saying I'm handling it well - I'm handling it the only way I can.

Unfortunately that way involves crying a lot and being rather irritable when people suggest "solutions" that I have already tried without success...