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.
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.
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
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.
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.
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.
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.
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