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 think what a lot of people who haven't experienced the depths of depression don't understand is the very depths, the very bottom, has a feel to it all of its own. Based on my own experience, I've come to see depression as a kind of well in a way. While me may not be able to feel our self on the verge (of going in), there's a point on the way further in where we come to eventually feel our self in it. A little further in and we can feel it more. But there is nothing, absolutely nothing, that compares to what the very depths feels like. 'Rock bottom' is the darkest place and it's a place filled with nothing but utter despair and hopelessness. The only people who know how this feels are ones who have felt it for themself. It's a horrible torturous place Les. Of course, I'm telling you something you already know.
Now, it's easier for me to see how my years in depression played out, what led me to find myself at the very bottom of that so called 'well'. With the benefit of hindsight, I can feel when I'm back on the verge or when I've entered into the start of the fall. Serious management is always needed in this case. I have a great fear of the depths of depression Les. I never want to go there again. It leads you to consider things you would once never have dreamed of. When it comes to no longer being able to tolerate that deeply deeply depressing internal dialogue and how it leads you to feel, the only thoughts become of the quickest way out of it all. It becomes about pain relief. I'm glad my attempt at pain relief failed all those years ago because here I am, talking to you.
It's based on my own experience, why I can't tolerate people not constructively managing the serious needs of those at rock bottom. Les, if I was there, I'd buy you a new phone, no questions asked. I may even take you out skydiving just so you could feel anything other than what you're feeling. With the skydiving, it's extreme but it would give to you something other than hopelessness to feel. While you may feel fear run through you, some exhilaration, the sensation floating in midair, the feeling of not having your feet on the ground etc, when we landed safely I'd ask you 'Did you only feel hopelessness in our time together?'. Btw, I've never been skydiving and I actually have a fear of it but I'd do anything to take someone in the depths of depression out of feeling where they are, even if it's just for a moment. Then, onto the next thing to feel, other than hopelessness.
The treatment went well, as far as I can tell. More effect on my memory this time - when I got back to the ward it took me half a minute to remember which was my room! But nothing major and my memory was easily refreshed... Not aware of any major or permanent memory loss yet. No jaw pain since the first treatment. Feeling a little weak and a mild headache but otherwise fine.
My mood has improved a little but I'm VERY tired. Chest congestion is much worse - I think due to the effect of the anaesthetic. I hope it doesn't put them off doing Friday's treatment...
The A/C is working a bit better now - my room hasn't been nearly as cold the last few days, and Mum brought a quilt to replace the horrible thin cotton hospital blankets so I slept a little better last night.
Good to hear you're feeling some positive effects. With that tiredness, give yourself permission to relax into it. You've earned the right to relax. Hoping that relaxed feeling offers you a sense of peace. I've found 'peace' to be a strange thing, a strange feeling. Sometimes I don't even realise I'm experiencing it. For example, I can be sitting in the armchair, watching Netflix, after coming home from work at night and can barely keep my eyes open. While I can be thinking 'I wish I wasn't so tired', sometimes what may come to mind after that thought is 'You're not tired, your peaceful'. Then I let myself drift off while within that state of peace. It's a beautiful feeling, letting yourself drift off, as opposed to fighting that feeling so as to stay awake.
Good to hear you've got that quilt. You're mum's a legend. With hospital blankets, I swear they can leave us feeling just as cold as not having a blanket at all. It's weird the way they work or don't work. You know there's something wrong when you're longing to fall asleep just to escape the cold. It's either the air con or the blanket or sometimes both. While I've enjoyed hospital food in the past and the nature of many of the staff, have never enjoyed the blankets 🙂
Take care and I hope your chest clears up quickly.
Just a quick update. I'm back home, feeling a little better than before I went to hospital but not great. I had 7 ECT treatments; I decided not to do any more for the moment as my fatigue is definitely worse from the general anaesthetic. I don't know how long the benefit to my depression will last, but I'll be able to resume treatments fairly quickly if I need to. The ECT certainly helped significantly with my depression, but the worsening of my fatigue was my greatest fear, and unfortunately that's exactly what happened...
It has helped clarify things a bit in regard to my fatigue - I now know for sure that general anaesthetic is something my brain can't handle for some reason.
In the meantime, I have an appointment with another Sleep Specialist soon. Hopefully he'll be more helpful than the other specialists I've seen. Also I'll be doing a multi-day EEG/ECG that should shed some light on things.
I'm so glad you've made progress. It's really something to be so proud of, undergoing the therapy. When I look back over my years in depression, as well as the years beyond that where I've managed so hard trying to stay out of it, I'm proud of every single effort I've made. It's seriously hard work Les, managing to find what works, while also running through a gamut of all the things that don't. Can take years of hard work to get to the point where we can say 'I can't believe I've come this far'. It's about raising our self while doing whatever it takes to love/evolve our self back to life.
Not sure whether you've had your B12 levels checked. Just a thought. Some folk discover their B12 levels drop a little after anesthetic (a certain type). The more often the anesthetic's administered within a period of time, the more the levels drop. Would be interesting to see where your levels are at. Personally, the high end of 'normal' range (reflected in a B12 blood test result) is too low for me. I'm an odd one 🙂 Have dealt with seriously low B12 levels in the past and it's messed me around something shocking. Messed with my memory, physical day to day function and left me so low in energy I could barely get out of bed or off the couch. Such a low level of energy can become depressing. I'm sure I don't have to tell you that. Anyhow, just a thought, getting basic blood tests to see how a lot of you're chemistry's ticking along.
Sounds like the plan ahead holds potential, seeing a different sleep specialist as well as continuing with the ECT down the track. The thing about specialists is...once you find one who is truly brilliant, they become a game changer. All the rest can leave us playing the same old game.