topic I have run out of hope in Suicidal thoughts and self-harm

I have run out of hope

HopelessLes — Mon, 21 Mar 2022 09:44:14 GMT

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.

I have run out of hope

Sophie_M — Tue, 22 Mar 2022 05:25:11 GMT

Hey HopelessLes,

Welcome to the forums, and thank you for sharing this with us. It sounds like there's a lot going on for you and your Mum, and you're not feeling very well supported when you're working really hard to reach out and get some support. That must be incredibly difficult. We’re really glad you could come to the forum to share this with our community.

We’ve reached out to you privately to make sure you’re ok. If you want to reach out to our counsellors to talk this through, we’re on 1300 22 4636, and you can reach us online here. There’s also our friends over at the Suicide Call Back service on 1300 659 467, or Lifeline on 13 11 14.

We’d really recommend having a look at the Beyond Blue safety planning app, Beyond Now. You can read about how it works and where to download it here. You can even call Lifeline and compete it with one of their counsellors over the phone if you'd like.

Please keep sharing your words on our forums. Many forum members may have experience with some of the challenges you mention and we think they will find great value in your kind and courageous words.

Kind regards,

Sophie M

I have run out of hope

Croix — Tue, 22 Mar 2022 09:40:38 GMT

Dear HopelessLes~

I'd like to join Sophie_M in welcoming you here. I'm glad you've met her as she gives good advice, firstly about peole to talk with, and secondly about Beyondnow, the Safety Plan phone app.

Being isolated does make things worse, as I found. I understand about talking with your mum and you may be right. However it does not have to be someone that knows all about how you feel, just being with another and general talk can help. Do you have anyone in your life you can do this with?

I understand you feel a failure becuse you are not looking after yur mum as you would wish. I guess the first thing to say is you are giving her love, and the second is that even when ill helping an offspring can give person, in this case your mum, a sense of purpose and satisfaction to go along with any worry. So not all bad.

The Beyondnow app, which you fill out in advance or on as good a day as you get, is pretty useful in a number of ways.

First it, even when incomplete, is something easy to reach for when feeling overwhelmed and the brain cannot concentrate, and secondly it helps you think about some of the things in the past that may have made you feel happier, maybe amused, or allowed you to distract yourself. I've everything on mine from comedy sketches, music, books, walking the pet, going for a coffee at a cafe, talking with someone and so on.

All of this does not come at once and needs to be things you relate to. For example it took me a year to fill in a 'reason for living'. The 'things I can do myself' section is often changing as I come across something new or re-discovered I can enter there. Getting a bit of guidance, as Sophie suggests, can't hurt.

Having to trim down a large account to fit here does leave a lot out at times, but there is nothing to stop you talking about a bit in the first post and another bit later on in another post (but not straight after the first post, get a few replies first).

I hope to hear from you again

Croix

I have run out of hope

tranzcrybe — Tue, 22 Mar 2022 12:24:58 GMT

If I may address your 'care assigned' role for your mother...
How long since you made that promise to your father?
Were you certain of what he meant by the request? For instance, was there an understanding that you were to sacrifice your own health and happiness, give up your future? Or would he have modified his demands with some extenuating circumstances such as to ensure she was not abandoned/neglected or denied assistance as necessary?
And what of your own position on the matter? Have you carried this obligation against your free will only to exacerbate your health conditions?
Wow, so many questions - you probably addressed these in your unabridged version, but I think your mother would welcome the chance to comfort you and put your troubled thoughts to rest. Honesty can be confronting but it can open doors to understanding, healing, and peace.

I have run out of hope

HopelessLes — Tue, 22 Mar 2022 14:05:44 GMT

Thank you Sophie.

I'll check out the links tomorrow, I'm too tired tonight.

I'm feeling a tiny bit less disastrous tonight; I had an appointment with a Neurologist this morning which I was extremely stressed about. But it went well. He prescribed a medication to trial that will improve my sleep, and hopefully improve my wakefulness. I'll get that tomorrow - my pharmacy had to order it in.

The one catch is: if I do actually have Narcolepsy, this medication will make me feel much worse! But that means even if it doesn't help, it might be a useful diagnostic pointer.

The Neurologist has also referred me to another Sleep Specialist - a GOOD one this time - and I'll also be doing a 4-day EEG/ECG which will provide a lot more data than they got at the sleep study.

Last night, and when I woke this morning, I truly felt that today might be my last day. I'm safer now but still feel very, very flat and empty and unable to feel positive at all.

In the past - even just a couple of months ago - having a somewhat positive outcome from an appointment would help me feel a little better, at least for a while. That doesn't happen any more. I guess that's anhedonia? I know I should feel better, and I want to feel those positive feelings, but they just aren't there.

I'll be seeing a doctor next week who I'm hoping will let me try an antidepressant in the only class I haven't tried yet - the very oldest ones. I have asked eight doctors so far and they all declined as they don't have experience with them. This doctor has experience - at least according to a list I found on the internet - so we'll see...

Hello Croix and tranzcrybe. Thank you so much for your posts. I will reply tomorrow.

I have run out of hope

HopelessLes — Wed, 23 Mar 2022 09:06:05 GMT

Hi Croix. Thank you for your post.

I have installed the app on my phone but couldn't fill in much. The problem is, I've been so low for so long that nothing lifts my mood any more so I don't know what to put. Distraction used to work, but not any more.

I have one friend, we've been friends for 26 years. He knows I'm struggling but I haven't told him quite how bad things are. If he asks, I'll tell him, but I worry it may damage our friendship.

I first realised I had depressive symptoms I don't know how long I've had it - probably my entire life! I remember as a child I never understood why other children ran around and played and yelled and said it was "fun" - I never got anything out of that.

I have only had one day this year that I felt OK, and even then I wasn't great. Unfortunately I don't know what made me feel better and it has not happened again. Maybe I have some unusual form of Bipolar Disorder, as I've had sudden but brief bursts of feeling better a few times. It comes on randomly and never lasts more than a day or two, and after each time it happens I end up feeling even worse than before.

It's incredibly frustrating as I know I CAN feel better - my brain isn't totally broken - but I can't predict it or control it and it's so short-lived. Antidepressants have been no help at all. Only one medication helped, and it helped a lot, but I can never take it again because of my blood pressure.

The really old medications I haven't tried yet are my only hope. My appointment is 6 days away but feels more like 6 months... Every day is so difficult to get through.

I've felt bad before but this is much, much worse.

Sorry my posts are a bit disjointed, I'm really having trouble with my cognition.

I have run out of hope

HopelessLes — Wed, 23 Mar 2022 10:14:13 GMT

Hi tranzcrybe. Thank you for your post.

The situation with my promise to Dad didn't involve any duress. When I rewrote that part I unintentionally made it sound more dramatic than the situation actually was. He didn't MAKE me promise; he just wanted reassurance that I would not abandon Mum. I'm an only child, so it mattered a lot to him.

Mum is still largely independent but frequently needs help with little things, and I can't help her because I'm sleeping 12-14+ hours every night/day and cannot successfully stay awake until mid-afternoon.

Even then I'm totally mentally exhausted and feel heavily sedated all the time. The sedated feeling is due to whatever is wrong with me - not a medication side-effect.

I feel so bad because mostly she just needs me to be there, to help with little things but I can't even stay awake to do that. She misses me, she feels lonely. She notices that I'm no longer able to do my usual activities and it makes her sad. It absolutely breaks my heart to know she's worried. I want nothing more than to be able to be there for her and look after her, but I can no longer even look after myself. I'm severely debilitated, but still I can't get any answers or any effective help from my doctors. I'm rapidly approaching the point I'll no longer be able to go to my appointments.

I was fully dependent on a medication to wake me and help me do things, but I no longer have it. Other meds have helped people with similar conditions, but they haven't worked at all for me.

I got the new sleep medication today but will have to start it tomorrow night due to an at-home carer appointment tomorrow. I will keep everyone posted as to how the new med goes.

Ideally it should help me feel better during the day, but if it has the opposite effect and knocks me out for the whole day, that will be a strong sign I have Narcolepsy.

I have run out of hope

Croix — Wed, 23 Mar 2022 10:21:33 GMT

Dear HopelessLes~

It looks like you are being pretty active in getting more opinions and more tests - that can only help and sounds very sensible. Particularly even if things do not work you can regard them as indicators in a process of elimination.

Good luck with them all.

I'm glad you downloaded the BeyondNow app, and your words have a very familiar ring. I too was stumped. As I mentioned it took me a year to write down one 'Reason for living'.

'Things I can do myself' is the hardest one when one is down. I simply could not remember all the things I'd found enjoyable or distracting -in fact I thought at that time there never had been much - so my first efforts were pretty weak.

Later I had someone who knew me well point out things I'd simply forgotten. That made a huge difference and that section over time became stocked with things, some of which turned out to be a disappointment, but some turned out pretty useful -a mixed bag

Over time I turfed out the useless and put in fresh material, and now I can reach for it whenever I need a lift and cannot think what to do.

It's funny you shuld mention old medications, I have been on the same mix for a number of years, one unusual and new, one so old the last time I was in hospital their ready-reference did not include it, a very old A/D indeed.

After trials of umpteen meds over the years it was a great relief to find a combo that actually worked.

I'm glad you have a long standing friend you can talk to. Even without disclosing everything it can be a relief just to have someone there to chat. Incidentally that friend may be able to help you remeber things you may have enjoyed or found absorbing.

How you approach that is of course something you'd know best, you may be right,saying how you actually feel may not be appropriate, then again one can be surprised by other's kindness and understanding.

Your post is not at all disjointed, it gives a pretty clear picture, and I'd have to say you are right, those few days when you feel better are an indication long-term improvement can happen

Please let us know how you get on

Croix

I have run out of hope

tranzcrybe — Thu, 24 Mar 2022 00:27:52 GMT

Let's hope for both your sakes that the new meds do the trick and life shall return to near normal for you.
You're fortunate to have your mum and carer there for you, and I am sure the favour will be returned as things improve.

Hold on to hope and better days ahead.

I have run out of hope

HopelessLes — Thu, 24 Mar 2022 06:09:01 GMT

Thanks for the replies.

Not much to say today except that things are worse.

I have run out of hope

Karen0901 — Thu, 24 Mar 2022 16:07:24 GMT

I really feel for you. I had the opposite problem and could never feel sleepy. It almost killed me. After not sleeping for 7 days I got onto a sleep specialist who recommended sleep deprivation therapy. This helped my body reboot but I still struggle.

Sleep problems are so hard mentally and physically. Keep positive because stress and sleep anxiety would likely make the sleep problem worse.

I have a son and if my son loved me and did what he could with spending time with me, I would be satisfied. Lots of parents have to deal with children abandoning them with little love or thought. You are not doing that. You are doing your best and I'm sure she appreciates it. She probably is also happy to help you because you are her son and it sounds like you both get along well. A mother feels a bond like no other to her child.

I have run out of hope

HopelessLes — Mon, 28 Mar 2022 11:47:55 GMT

Sorry everyone. Still not much to report. My mood has lifted very slightly but my wakefulness is far worse than before. The new sleep medication has been a total waste of time and money so far - it has made things worse, but not bad enough to be a definite pointer toward narcolepsy.

I'm booked in for the EEG/ECG study. Unfortunately the earliest appointment I could get is late May...

I have run out of hope

Croix — Wed, 30 Mar 2022 09:33:58 GMT

Dear HopelessLes~

There is nothing to say sorry about, you post whay you can when you can, and that's all anyone can do.

It is a great pity that medical matters seem to happen in slow-mo, and having to wait to late May for those tests is very frustrating.

OK so I'd think that you are expecting maybe feeling not as alert as you would like during hte day, and broken nights. Do you think there are any things you can do to ease yourself though this period?

As an example I know most times when I'm not going to sleep (which is a lot) and try to have a particular book, maybe a blanket near my chair, a movie I've decided on during the day, or some other factor to while away the wakeful hours.

Do you think your mum minds helping you, or does she, like so many parents, feel useful and has a purpose?

Croix

I have run out of hope

HopelessLes — Sat, 09 Apr 2022 08:54:00 GMT

Hi Croix

Thanks for the suggestions. Mum doesn't mind helping me, but it affects her health and that makes me feel so sad.

Lately my depression and fatigue have been so bad I can't even read much. I try to watch videos on YouTube etc but often I can't follow what's happening and I just get frustrated.

The new sleep medication has been a total failure. I went to the Dr I hoped might be able to help with the old antidepressants, but he said my health issues are too complex and he didn't want to get involved.

Things have been much worse the past week. I got back in touch with the local Acute Care Team but they aren't sure if they can help. I don't know what to do.

Mum has hurt her back again and will likely have to go to hospital. I do not know how I'll manage on my own - even if it's only for a few days... My mood is so low and so utterly hopeless I don't know if I'll be safe on my own.

I have run out of hope

Croix — Sun, 10 Apr 2022 11:56:11 GMT

Dear HopelessLes~

I'm sorry about your mum hurting her back, and may go into hospital for a while. I can understand the effect this wil have on you. After all you depend upon her at least a bit to keep you from getting too far down.

I suppose like any difficult thing coming up it can be wise to plan for what you will do, much the same as if you are in a flood-prone area. There really isn't much time to think if a flood comes, and the same applies to being overwhelmed.

As you have had experience of how you have felt in the past what steps do you think might be good to tide you over the worst bits? They do not have ot be complete answers or 'magic fixes', just every little bit helps.

I hope to hear back from you when you can

Croix

I have run out of hope

HopelessLes — Mon, 11 Apr 2022 06:01:14 GMT

Thank you Croix.

I'm not sure what I'll do. So far she hasn't mentioned going to hospital and she's resting as much as possible. Hopefully she'll be OK.

The problem is, I've never been close to this low, ever. So I don't have any idea how to handle it. I have no safety systems or support in place. My last friend is reluctant to talk any more.

I'm trying to find a new psychiatrist but haven't yet found anyone taking new patients.

I think my only option will be to go into hospital, for my own safety. I feel less and less in control of my emotions each day and have already "lost it" a couple of times, luckily didn't do any major harm. I'm really apprehensive to go to hospital due to my other health issues. If I had depression on its own, I would have admitted myself long ago - before things got so bad. The problem is, I can't see how a hospital admission would help. I can't safely do ECT due to the general anaesthetic, and I have had no result from the medications they're likely to prescribe.

I have run out of hope

Sophie_M — Mon, 11 Apr 2022 06:48:46 GMT

Hi HopelessLes,

Thank you for your honest and brave post. These feelings can be incredibly tough and we are really sorry that you are facing them at the moment.

If you ever feel like you are unsafe, this is an emergency and you should call 000 straight away.

We are reaching out to you privately as well to check-in and offer any other support we can. If you want to get in touch with us please call us on 1300 22 4636.

We know it has been mentioned above, but we’d really recommend the Beyond Blue safety planning app, Beyond Now. You can read about how it works and where to download it here. You can even call Lifeline on 13 11 14 and chat with them about what it could look like.

We know it can be difficult to reach out for support so thank you for doing so today. We can see that there are others on this forum who can understand what you are going through and that are here to support.

Kind regards,

Sophie M

I have run out of hope

Croix — Mon, 11 Apr 2022 10:45:44 GMT

Dear HopelessLes~

I'm glad your mum seems a little better, as you say hopefully she will not have to go to hospital.

Even so I can see you are rather stuck without seeing any real options if you are by yourself for a while. Again I think it comes down to preparations.

Actually my experience is that hospital can do two things, it can be a safe place, and it can be a place for treatment. They don't necessarily both happen together. So if you are overwhelmed please don't hesitate to ring 000.

How you negotiate when on a ward is a different matter, and I'm sure your past experience can be used to help you gain hte best they have ot offer. Do you think it might be possible to write out all the treatments and meds you have had in the past - and if you can remember what the results were. Also of course your physical condition,

This could give a basis for a sensible discussion where you remain in charge of what happens, while being in a safe place

So what do you think?

Croix

I have run out of hope

HopelessLes — Mon, 11 Apr 2022 12:51:17 GMT

Thanks Sophie and Croix.

I saw my GP today; we're trying to find a new psychiatrist but it's difficult as so many have closed books. I have sent a few emails and have some numbers to call tomorrow if I can wake up early enough.

It's very interesting that you said hospital is for safety and/or treatment - I hadn't thought of it that way. Thanks, that's helped a bit.

I have a full lifetime record of my health history that I typed myself over the past 6 months - 7 pages long! - and a list of current and past medications. I don't have the exact details of how each medication affected me, but I have arranged them in categories: Somewhat helpful; Uncertain; No effect; Made things worse. I have a category list for each of my three main current health issues.

Every doctor who has seen my paperwork (around 10 by now) has commented that it's very helpful. If/when I go to hospital I'll definitely take a copy or two with me. It's especially important at the moment as the depression has severely impaired my ability to recall things quickly (or at all)

Considering how many medications I've had trouble with - not just antidepressants, but other things like antihypertensives and the new sleep medication - I wonder if I may have some genetic metabolic thing going on. There's a blood test that can look for metabolic abnormalities and give a list of medications and rate them from most- to least-likely to work. I forget what it's called. I didn't get a chance to mention it to my GP today but I'll ask her next time.

Thinking about hospital, my greatest predicament is I can't leave Mum at home by herself, especially as I have no idea how long I might be in. If I KNEW she'd be OK I would go in a heartbeat...

I have run out of hope

Croix — Tue, 12 Apr 2022 11:46:15 GMT

Dear HopelessLes~

I'm glad oyur doctor is trying to get you another psychiatrist. As you say it might take a while but if one keeps on plugging away I'd expect one to be there for you.

I'm afraid my efforts at documentation do not sound nearly as thorough as yours, bit I've had much the same reaction, doctors and psychs have said they were helpful and did give a list to work from.

You might well be wise to see if there is a condition giving you less than optimum reactions to medications. Like most things if you get to know the problem you and your doctor may be able ot develop work-a rounds.

I think you must be a very caring person, the way you talk about your mum and what she needs - I think in many ways she is lucky to have you

Croix