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 Croix

Yes, the psychiatrist's approach makes sense - but in the context of less-severe depression. I fear he doesn't quite understand how bad I'm feeling 😞

Yes, this will be a med I've tried before with no success, but it's the only thing they will prescribe - the really old meds are not an option apparently. I asked about ECT, but it doesn't sound likely that they'll consider it. As far as I'm concerned it's my only hope at this point - I have zero confidence left in meds.

I'm far too exhausted to be bored. Can't read much because my brain just won't work. That's not because of the depression, but whatever is stopping me from being properly awake.

I've been moved again - still in isolation for another two days but back in the main ward. Still have a slight cough but can't tell if my sinus congestion is from COVID or from crying all the time... My mood is the lowest it has ever been.

[Croix]

Dear Les,

How about I call you that? The full name is not what I'd like for you.

It's probably superstition but I do think words have an influence. I'll go back to the full name if you want. In any case it is not an attempt to belittle what you go though, which is pretty horrible.

Sometimes even the best psych can not realise the gravity of a situation, I had that myself in the early days. I found the only way to be certain they understood was to write it down pretty frankly point by point - including suicidal matters in detail together with hopelessness and the bad way I was treating those I loved.

The things you might write are of course not going to be exactly the same as mine, the constant fatigue for one.

A bit hard to make myself write it, however going on as I was would have been worse.

It did work, I was taken at my word and my treatment and therapy changed as a result. Worked out OK in the end, though it took time of course.

Although you have considered ECT as a possible option, may I suggest you also consider other therapies too? While I don't know your diagnosis of course if you are interested in the various treatments for depression then the following might be worth a read:

https://www.beyondblue.org.au/docs/default-source/resources/bl0556-what-works-for-depression-booklet_acc.pdf?sfvrsn=fe1646eb_2

It's pretty comprehensive. While I'd not take action on anything it describes on my own there may be matters in it to discuss with your psych.

Bearing in mind your tiredness it might take you a few goes to work your way though it, however that's good, any worthwhile document like this is bound to take up several pages.

Now that you have been moved again do you mind if I ask what is like - are the staff any friendlier, is it quiet at night and so forth?

Croix

[Karen0901]

I'm so sorry you are feeling very bad. It's very difficult when you feel nothing is helping.

In my experience, the depression will not improve until your sleep improves. Solving this should be the focus. Have you looked at sleep hygiene or sleep deprivation therapy?

[therising]

Hi Les

Definitely a shame people where you're staying aren't more on the ball in regard to how you're feeling and how they can best serve you. I think, unless people around us have experienced depression, they can't entirely relate to a lot of the triggers.

Was thinking just this morning something along the lines of 'Is all I am a bunch of reactions based on triggers?'. Of course, a deeper part of me knows there's so much more to me than that but this doesn't stop me from wondering. It seems that lately my moods are based on how so many specific triggers bring me down. Again, that deeper part of me that I've come to faithfully rely on tells me I'm going through a period where major change is seriously required in order to evolve beyond this potentially depressing point in my life. Once outstanding change begins, I'll feel differently. So...

When you're dealing with depressing sameness and no one addresses or constructively helps you through the depressing sameness, that in itself becomes a major trigger. To give you the same med that didn't work in the past, to not talk you through the overall process that will lead you out of how you're feeling, to not provide you with one thing to really look forward to/a highlight (such as the size of the meals), to not provide the time needed for you to feel heard, reassured and supported etc, you could say 'Been there done that and it's all highly triggering'. In a way you could say those trying to help are somewhat depressing. To be fair, under the circumstances they may be doing the best they can but that doesn't stop their best from being depressing to some degree. With those unfriendly nurses, I imagine you're not the only one to find their nature triggering.

Can recall the trial and error process with meds throughout my years in depression. While each time I was given 'The one that works for a lot of people', doctors were overlooking the depressing side of trialing a new one. Now, if you were 100% guaranteed that this one would work then it's well worth waiting for it to kick in. It's a different story when our reference is something like 'Do I really have to wait weeks to find out this one's not going to work, just like all the others'. I believe, in a lot of cases, this kind of trial and error process needs to be seriously addressed.

While small, a constructive change may sound a little like you telling someone 'While the meals bring me a little joy, I'd appreciate a larger serve of that joy'.

[HopelessLes]

Thanks Croix

That's OK, I don't mind.

I have told several nurses how bad I'm feeling and they have noted it on my chart so presumably the Dr will know.

I have made a small note on my phone and have added things as I think of them. I don't know if it will be helpful for the Dr though.

I read the What Works for Depression booklet a while back and have tried a few things from it in the past. I'll have another look through it.

The isolation room was small but more comfortable than the previous room. I've since been moved again and the room I'm in now isn't a proper hospital room - it appears to be a function room with two beds in it. No shelves for storage, I can't even unpack. The bed seems OK though, unlike the last two... The whole ward is very noisy. The nurses are OK at the moment.

[HopelessLes]

Thanks Karen

Nothing is working, because nothing has been done. The nurses are very surprised I've been here nearly two weeks with no treatment at all. They know I'm really, really not going well, but there's not much they can do.

The psychiatrist mentioned sleep restriction to try to help with my energy, but I fear that that could be very harmful if my problem is Narcolepsy - it might make things a lot worse.

[HopelessLes]

Thanks therising

I guess the most frustrating thing other than feeling so low, is I feel completely left out of the loop. One of the nurses put in a request for me to see another Dr last week, but I never heard from them. The Dr called my Mum, but I never heard a word. The nurses have requested things that never get followed up. I asked to talk to a psychologist or a social worker... Nothing. There appears to be a major communication problem here.

IF I had some positive thing to hang on to, even something tiny, it would be a big help. But I have lost the ability to feel positive. And as for thinking about the future... what future...?

Mum suggested thinking about things I'll do once I get home. I just burst into tears. I have no future. All I have is the constant decline of the past, with no promise of anything positive and no promise of even the slightest improvement or recovery. The more I try to "think positive" the worse I feel. Will I ever even go home again? I don't know.

[Croix]

Dear Les~

There's nothing worse than being ignored or out of the loop . Makes a person feel invisible. I'm glad it is not the nurses as they are the ones you are with most. If there requests are ignored at leat you are not alone.

I remeber one time I was admitted 'voluntarily' to a psych ward but found they would not let me out to go to a bookshop. They would not budge and I had to wait for my psychiatrist to visit the ward before this was changed. In the meantime I felt ... um "not good" is probably the best description I can give here.

Having a bit of control is a big thing, lets one feel like a person.

I hope with the more comfortable bed you manage a bit of rest but when awake feel more alert.

Croix

[therising]

Hi Les

Personally, I find it impossible to think positively when I'm led to feel down or left to feel down. I don't believe it's our fault we can feel what 'down' feels like. To be sensitive enough to feel where we're being led points to our ability to feel accurately. While such a perception won't automatically bring us out of a depression, at the very least it may stop us from questioning 'What's 'wrong' with me?'. There's nothing wrong with being able to feel or sense accurately and this is where people treating depression need to be incredibly careful. They're dealing with 'a sensitive' or 'a feeler'. It's so important, when dealing with such a person, that 'up' is managed strategically.

Sounds like you've had quite a number of people leading you to feel down shifts. It triggers me to hear you're being left out of the loop. In my mind, I imagine myself yelling at those who are meant to be treating you carefully 'PEOPLE, WHAT THE HECK ARE YOU DOING LEAVING LES OUT OF THE LOOP? IT'S HIS LOOP YOU'RE LEAVING HIM OUT OF!'. Beyond my years in depression, I've done and still do a lot of casual research when it comes to how we tick mentally, physically and naturally. When I look at some of that self understanding, I can't help but wonder why specialists don't tell folk how their brain's meant to interact with a med and why it naturally doesn't at times, why we feel the way we feel with such a lack of energy or how 'down' is a telling sign so we're not left to feel like we're failing in some way. It's kind of like you're left twisting in the wind while being kept out of 'the loop of knowledge'.

When it comes to feelings, I kind of feel sorry for my husband in a way as he lives with 3 super sensitive 'feelers'. Not feeling as intensely as we do (myself, 19yo daughter and 16yo son), he's left out. I've tried leading him to be able to feel more but he flat out refuses to. While my daughter's known to say 'Stop it, I can feel what you're doing to me' if I'm stressed, she makes me conscious of my stressors and other people's ability to feel for me. While my son's mastering the sliding scale of feeling through to healthy emotional detachment, his developing abilities inspire me to be just as conscious.

To be able to feel other people's mismanagement is not your fault. To feel a lack of vision is not your fault, especially when other's are meant to be creating that vision for you. To become intolerant and more demanding can sometimes be the ultimate challenge.

[Karen0901]

You definitely have a future. I know how you feel. Maybe not exactly the same, but enough I can understand.

I have felt completely hopeless and without a future several times.

It won't seem like it now, but a solution to improve how you feel will come. You just need to keep searching despite how exhausing and hopeless it feels. Mental health issues are usually a series of peaks and valleys.

I find it helpful to focus on things that are good in my life, even if I can't appreciate them at the present time because the depression is blocking the feeling. For you, this might be your Mum and how much she loves you and wants you to feel better.

Unfortunately, mental health help is not supported as much as it should be. I also found it very hard to see the doctor etc., in the hospital. However, part of the problem may have been you getting Covid. They might have needed you to recover first. Just a thought.