I have run out of hope
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.
I feel for you so deeply as you've spent so many years relying on others to play detective under such debilitating, frustrating and depressing circumstances. To be brushed off on occasion and be told there's nothing wrong is incredibly triggering. I think the response toward such a poor, depressing and dismissive detective should be 'Oh no, I don't think you're understanding me. I can FEEL there's something wrong. My body's telling me there's something wrong. The fact you can't detect what's wrong doesn't mean there's nothing wrong'.
I can recall being told by GPs on 2 occasions 'It's just a part of life', in relation to the level of fatigue I was experiencing, when I was Mum to 2 younger more demanding kids. They're 16 and 19 now. I tried to explain to them that the fatigue was debilitating but they knew better. One of those occasions led me to do an at home sleep study on my own. Turned out I had sleep apnea, something I was treated for which changed my life. On the other occasion, the GPs let my fatigue get so bad it became concerning. Couldn't recall names of people close to me, was on the verge of not being able to drive anymore etc. By the time I went back and demanded results, I could barely get off the couch each day. GP told me I had the worst B12 deficiency he'd ever seen. Was treated and all came good. While both conditions can produce depression, I've come to note over the years that one of my triggers for depression is a severe lack of energy. Without enough energy we can't do the things that give us a sense of achievement (providing hits of dopamine). Without enough energy we also can't feel the higher level feelings such as joy, happiness, excitement etc. When we're not 'in charge' with energy, we can be feeling like a flat seriously depressed battery that can't feel much of anything. We're designed to be in charge, designed to feel.
Before I got to your last post, one of the things that popped into my head was 'metabolic issues', so, funny you should wonder about that. Who knows. Can't hurt to simply wonder. Are a lot of the detectives/specialists you've seen over the years off track? Who knows. Could what you're experiencing involve a whole other issue which no one's considered? Can't help but wonder. Have some of the meds over the years created a kind of toxic effect in some way, interfering with some of the body's natural chemical processes? Again, who knows.
Btw, you're a legend with that case file of yours 🙂
Thanks for the replies. I'm too short on energy to reply properly.
I talked to Mum a few nights ago and told her that I'll need to go to hospital soon, but that I don't want to leave her on her own. She said it's more important to get help, that she'll be OK. It was a huge relief to finally be able to talk about it, and that she's OK with me going in.
I'm very apprehensive about it though, and I have so many things to do before I can go in, but my brain is so broken I have no idea where to start and haven't been able to do anything yet.
I discovered that one of my sleep medications was actually harming my sleep rather than helping. My sleep quality is now a bit better now, but I haven't felt any improvement - in fact I'm more tired than ever.
Unfortunately my depression is getting worse and worse... I'm rapidly losing any remaining will I had to try any more. I just can not see any point. Nothing has helped in the past so I have no reason to expect that anything will ever help. And, as my depression is so much worse than even a week ago, I feel it's already far too late...
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I cannot say the experience is the same for everyone, however I'd like ot talk about one admission ot the psych ward. It ended up doing me a lot of good, even though there things about it I did not realy enjoy.
I guess the real benefit was being away from life. I no longer had pressure, I did not have ot deal with things -or people. I could just be quiet.
I remember being in the smoking room (yes, this was a while ago) where there was a frosted window that only just opened to a small gap. The ward was high up in hte hospital tower and I could look down though that gap at bushes far below with pigeons flitting between them. I could also see the pavement and road down there, with small figures of people rushing though their daily lives.
It gave me a sense of being apart, a balm to me at the time.
I hope you can find something in the hospital to be a balm to your soul too
You've made an incredibly brave move at an overwhelmingly challenging time of your life, something that is so hard to do. The move that says 'I just can't manage this on my own anymore, I need help' is a brave move, where all pride is put aside on the ultimate quest, to make a difference.
I do believe that there comes a time in the lives of most where a challenge can be so great that it simply can't be managed alone. From my own experience, the depths of depression is definitely one of those challenges, where a circle of 'go to' people simply must be created, without a doubt. It's getting past that initial doubt that can prove so challenging. 'I can do this on my own' is a belief that can get in the way of great progress.
I'm glad you're reassured by someone coming to stay with your mum.
As you take this step, I wish you only the best on this new path.