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 everyone. I'm not feeling well enough to reply properly right now. Didn't sleep well and the thoughts won't stop. They get stronger and more insistent the more I try to fight them. I'm exhausted and starting to feel unsafe.

[HopelessLes]

Feeling a little better today. I had a complete breakdown while talking to the Dr and he got the message that I'm in an extremely bad state. He has agreed to try ECT. Such a relief to finally feel heard, and that help should be coming soon. There will be a wait but at least SOMETHING is happening...

[That Other Guy]

I am so glad you spoke to a doctor!! We are ALL human and there are just battles we simply cannot fight alone

[therising]

Hi Les

So glad to hear there's some progress being made. People don't always understand what long term depression can really do to a person. It painfully chips away at a person over time. I've found that sometimes a breakdown can be a good thing, under certain circumstances. Sometimes it can really break things down into simple form, for those around us. Simply, things have become unbearable for you and I'm glad the doctor finally recognises this. If a breakdown is what it took, so be it.

Hope you experience more progress tomorrow. Feeling progress is definitely fuel for the soul.

[HopelessLes]

Morale is at an all-time low.

A pipe burst and took out one of the main electrical circuits - there are no lights in the bedrooms, showers and toilets, and no hot water. We've been told it will be several days before it's fixed.

Meanwhile there's been a large turnover of patients and several of the new admissions are very rowdy and abusive to the staff and other patients. They have been smoking indoors, in the common areas. Given that this is a public hospital it's illegal for them to smoke at all, let alone indoors. But nothing has been done to stop them.

My anxiety is severe. I had about 2hrs sleep and can barely leave my room. I'm in a double room but fortunately on my own at the moment.

I have signed the consent form for ECT but otherwise no progress has been made.

[HopelessLes]

Conditions are a bit better today. The power and water are back on and the other patients have largely calmed down.

My mood is stuck at 0.5/10... I feel absolutely no positivity and no chance that the treatments will help. This is the feeling I need relief from - I need a positive change, I need hope - even the tiniest bit. But my brain isn't capable of positivity any more. The re-started meds have done nothing so far. I still haven't heard how long the wait for ECT will be.

[therising]

Hi Les

Glad the power and water are back on and everyone's calmed down a bit. Interesting how people prioritise what they believe is urgent. I imagine if you had a problem with your 'waterworks' down there and your overall power/energy levels, things might move a bit faster in your favor.

As I've mentioned before, people don't always realise how seriously debilitating long term depression can be. Years in depression can feel like years of playing some kind of waiting game - waiting to come out of it, waiting for the revelations that can make a difference, waiting for meds to kick in, waiting for the right one to work, waiting for people to better understand all the ways in which depression can impact a person, waiting for the right specialist to come up with an amazingly positive plan and so on. So, when people keep depressed folk waiting for something, being led to wait yet another time can be highly triggering.

Then you can become a little bold about it all perhaps by asking questions like 'Why am I being kept waiting for this new treatment?' or 'Why do I have to wait so long for an appointment?'. I think we just have to cop the label of 'Difficult' or 'Confrontational' or 'A little aggressive' and wear it as a badge of honor because, at the end of the day, we're honoring our self in the process of 'being difficult/confrontational'.

I think losing patience or losing tolerance isn't always a bad thing. I've had moments in my life where I've 'lost it' before and couldn't help but wonder 'Where did that come from?!'. To be honest, I'm quite happy for the maniacal cow in me to come to life on occasion. She gets the job done when people around need a serious wake up call. The maniacal cow leads people to mooooove it, creating a bit of motivation 🙂

You're a patient and tolerant person Les, beautiful considerate qualities in a person. Don't let people take advantage of your lovely nature.

[HopelessLes]

ECT was supposed to start today. Went through all the stress of the prep (fasting, moving to another part of the hospital etc, only to have them cancel it as the anaesthetist didn't show up. The next available time isn't until Friday 😞

I was so devastated, once I got back to my bed I self-harmed for the first time ever. The nurse gave me some meds to calm me down but they usually don't do much.

[Sophie_M]

Hi HopelessLes,

Thank you for sharing an update. We’re really sorry to hear you’ve had this really difficult experience, preparing for ECT only to have the appointment moved. We’re really sorry to hear that, but we’re glad you could share this here. Hopefully we’ll hear from the community soon, who may be able to offer some understand, and perhaps some ideas for the next few days as you await your new appointment.

We’re reaching out to you to offer some support. If you’re struggling with thoughts or feelings about self-harm, please reach out directly either to the professionals with you there, or by giving ourselves or Lifeline a call. If you’re not able to do so, please know that we’re here, and in an emergency the number to call would be 000.

Previously, community members have mentioned an app called ‘Calm Harm’ being really helpful for managing self-harm urges, in case that’s something you’d like to have a look at.

Thanks again for your bravery and openness in sharing here, HopelessLes.

Kind regards,

Sophie M

[therising]

Hi Les

To say that's disappointing is an understatement. No wonder you're so upset. I feel for you so very deeply. It's their responsibility now to get you through to Friday. Whatever meds it takes, that's what they should be managing with, as well as encouraging you to talk openly about how you feel and how the disappointment has really impacted you. Be completely honest with them Les - Tell them, if the meds aren't good enough, they need to do better in finding what works for you. That's their job. They need to manage this in every possible way that serves you best. Anything short of that isn't good enough.