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.

[Karen0901]

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.

[HopelessLes]

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...

[Croix]

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

[HopelessLes]

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.

[Croix]

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

[HopelessLes]

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.

[Sophie_M]

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

[Croix]

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

[HopelessLes]

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...

[Croix]

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