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 so much for the replies and support. I've been in the ward just over 24hrs but haven't yet seen a doctor. I haven't been told when I might be seeing one. Everything is unfamiliar and unusual compared to a normal hospital ward and my anxiety isn't doing well... And with how long it took them to get things set up I missed a full day of medications, which certainly didn't help. Haven't slept more than a couple of hours total since I came in.

[HopelessLes]

Thanks. I don't feel brave, but I feel OK that I have at least made the most difficult choice in realising I can't get myself out of this and seeking serious help.

I'm still very apprehensive though as I don't know if they will see the full picture, that I am in such a severe state. This isn't just depression, it's a loss of hope. A loss of meaning. A loss of my self. A loss of everything. I'm not sure if they can treat that. Treating the depression will help, but I'm worried it's too late.

If I'd been able to get help sooner - a year ago, before things got so much worse - I would have had a much better prognosis. I know I held out too long, but there were SO MANY opportunities that simply led nowhere. I always thought the next one would be fruitful. But repeated disappointment wears away hope eventually, even if the hope is strong.

I feel OK that I'm closer to getting the help I need, but I also feel it's my last chance... I'm so debilitated I don't think I'll be able to go home if things don't improve.

[HopelessLes]

I saw the psychiatrist this afternoon. He hasn't yet read my entire medical timeline but had some ideas for possible medication changes. He said he'll read the rest of my information (13 pages total) and work something out. Just got moved to a different room, which I'm happy about: the other room was GRIM.

I'll update tomorrow if anything significant happens.

[Croix]

Dear HopelessLes~

Well moving ot a better room can help, and I hope you found the psychiatrist a reasonable sort of person. I've found most in hospitals are, if a bit overworked.

I know you think "If I'd been able to get help sooner ..." but I'm not sure that is right, after all to get the best out of assistance both the circumstances, such as you mother, and oyur own desire are needed. It may be you were not quite ready before until you had tried other things and now will be a good time.

Doesn't mean it will all be pleasant, but you have made a big step in getting admitted off your own bat. It won't be wasted.

You talked of the severity of you condition, mentioning "it's a loss of hope. A loss of meaning. A loss of my self. A loss of everything. ", all of which I found in me came from my depression, which introduced such horrible thoughts in my mind (I was fooled and I thought they were mine) and closed of anything that was positive, just leaving hopelessness.

As my depression was properly treated things improved out of sight. While there are still bouts I'm armed with the knowledge I've been there before and come though to better things. That helps a lot.

I hope you have peaceful night and more things get sorted tomorrow

Croix

[HopelessLes]

Thank you so much for your posts, Croix, they have been very helpful. And of course thanks everyone else too!

The psychiatrist seemed very good, and he did something no doctor has ever done - he validated my experience. All the other doctors either didn't comment, doubted me, or outright invalidated my experience.

One thing that worries me slightly is that he thinks my main symptoms are not likely to be caused by depression. I don't know what that means, whether he thinks he can help me or not.

I had a bad night again. Not AS bad but still only 4hrs sleep. Tonight I'll have to ask for something to help me sleep as the extra tiredness is definitely making things a lot worse. I came in because I no longer felt safe at home; I'm now much worse. I feel safe enough here in hospital, but I definitely cannot go home until I make a MAJOR improvement.

I didn't see the doctor today, and it's a long weekend... I'm not feeling good about that, at all :'( If I was stable it might be OK, but I don't know how I can survive that long the way I'm feeling...

[therising]

Hi HopelessLes

It sounds like the doctor you've met is a wonderful doctor. I've found they're the best kind, the ones who are wonder filled, as opposed to those who tend to jump to the wrong conclusion because they're too closed minded or don't have the time to wonder to such a large extent.

Give me a doctor who loves playing detective any day. Everything to them is a clue that can lead them to the culprit, not simply the most convenient suspect. You want a doctor with good instinct, one who says 'This seems like the most obvious issue but something tells me something else is at play here'. A doctor like that is an absolute keeper. Sometimes doctors like this have a tendency to order lots of tests based on the fact that every result is a clue and the more clues the better, when you're trying to solve a mystery.

Having to wait for results is incredibly challenging, especially when there's such incredible desperation. The desperation that comes when we're in the depths of depression...well...there's nothing like it, based on the pain being so unbearable.

While you're waiting, do you think you have the ability to think of as many clues as possible when it comes to all the challenges you're facing. Doesn't necessarily matter if they don't appear relevant, they may be relevant to your doctor. If he's interested in puzzle pieces, give him as many as possible and let him see if they fit or where they fit in or how they connect up. As I say, they may appear completely unrelated. For example, someone could say 'I started to feel this way or that around the time I began going to the gym. These things happened around the same time a new employee started where I work, which all coincided with me being super sensitive to light and sound. By the way, I started on a new supplement recently, along with the medication I've been taking for 12 months. I've also been under a fair bit of stress at home recently'. A handful or all of these factors may be relevant clues to someone looking for clues.

Your new doc is a smart guy. My theory is - talk to the most reliable witness. If a medical or psychological detective is going to say to their best witness 'What you're saying is invalid' or 'What you're saying is ridiculous, all in your head', that's seriously questionable. You are the best witness to your life and how it's been playing out. Don't let anyone lead you to doubt your own testimony 🙂

Hoping your doc is an absolute game changer.

[Croix]

Dear HopelessLes~

Yes, waiting for business hours to start again is a horrible thing. I know my mind keeps turning over the possibilities when I'm waiting, and then supplies the worst outcomes. Sometimes imagination is not all it's cracked up to be.

So when in the exact same situation as you I was helped out by a very kind psych nurse who went home and came back with a stack of books. That kindness in itself gave me a lift. I felt at least one staff member saw me as a person.

The books were an excellent distraction and while the time still dragged I had them to fall back on and make an effort to read.

I'm not saying books are the answer for you, what do you reckon you could do to pass the time?

I think like me you've found a staff member who does see you as a human, not just a patient. That's the psychiatrist of course. I go along with what Therising has said. You are the expert on you, and to have the right person listen and take notice - without jumping ot conclusions - is pretty good.

Frankly I would not be too worried about depression not being the whole diagnosis. The more that is known about your condition the more successful treatment can be - after all once the problem is known that helps a lot.

Knowing you are safe is a pretty big thing, and being in hospital has to have been a step in the right direction.

I hope you manage to get some sleep tonight - are you in a room by yourself?

Croix

[HopelessLes]

Thanks for the replies, I'll post a proper reply later. Too stressed to read much right now.

Sadly I had another terrible night. Only 2 hours' sleep before the medications wore off. Can't sleep at all during the day because it's so noisy. Earplugs simply aren't enough. My anxiety was already bad, but the lack of sleep has made it much worse. The doctors haven't charted me for PRN meds so I can't get any relief. I don't know what to do.

I'm in a double room which is fine except I would love to close the door to keep some of the noise out...

[HopelessLes]

I'm feeling the tiniest bit less terrible today, most likely the after-effects of the PRN medication they were finally able to get! I still only had 4 hrs sleep but at least it's an improvement...

The medication had a strange - but not unpleasant - effect as it wore off. As the last of it dissolved I woke up and couldn't get back to sleep.

Unfortunately, since yesterday afternoon I have developed a sore throat, dry cough, slight fever, and it already feels like it's heading onto my chest. Haven't been COVID tested yet as they don't have any RATs... I tested negative on ED admission and definitely didn't have symptoms then.

[HopelessLes]

Just when I thought things couldn't get any worse... RAT was positive. It changed colour in under 1 minute. I've been moved to another section. Must have caught it in the ED, as nobody else on the ward has it.