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.

[HopelessLes]

It gets worse still... it's spreading in the main ward. I don't know if I was the cause or not, but I feel terrible as I most likely was 😞

I told them as soon as my throat got sore, but they didn't really take notice. Now it's going badly wrong...

I just came in to get help, but as is usual for me, things went far, far worse than I could have ever imagined...

[Croix]

Dear HopelessLes~

I'm sorry you have those Covid symptoms, it sounds very much like the hospital was not doing it's job for the infection to spread to uninfected patients - yourself included.

I hope you only have the lightest dose and it goes quickly.

One brighter thing is the fact that the PRN was arranged and the meds they gave you had some effect. I guess 4 hours is an improvident even if not nearly enough and waking up not feeling really dopey is a plus. A lot of the stuff I've had does not wear off until just about the next evening.

So did you find something to occupy you after you woke up so early?

Croix

[HopelessLes]

Thanks Croix

I don't think anyone made any major mistakes, it's just an unfortunate situation.

So far for me it's indistinguishable from a common cold. Maybe a bit quicker to develop, but no more severe. I'm double-vaxed but haven't had the booster due to poor health.

The good news is that this section is MUCH quieter than the main ward - only 4 beds here. No doors slamming all night... So I slept much longer, about 8.5 hours, although not as comfortably as the mattress is very hard.

The PRN medication wore off very quickly and I didn't notice any after-effects at all. I didn't need it last night, my usual meds were enough, thankfully.

If I wake in the middle of the night I'm far too tired to do anything so I just lie there trying to get back to sleep. I discovered that if anything triggers adrenaline, it immediately cancels out the effects of the sleep medications. The other night I was almost back to sleep when a door slammed extra loud and the drowsiness from the meds instantly disappeared.

[therising]

Hi Les

Sounds like, while in that environment, you're able to get a better sense of how you tick and what some of your triggers are. I think, sometimes it takes a certain environment (one without so many distractions) to lead us to do nothing other than observe our self and how we work.

Interesting about the med suddenly not working as well, based on a particular trigger. I suppose you could say that you're now able to identify what leads it to suddenly not work quite as well. Perhaps it's a matter of the sudden trigger for your nervous system and the chemistry that comes with that overriding the chemistry produced by the med. Seeing we're designed for fight and flight, unless we're seriously doped up, our nervous system will naturally become hyperactive when the need comes about.

It's a serious challenge when you're a 'feeler' because you can feel just about every experience - the slamming of a door, your own thoughts, your imagination, the words others say to you (degrading or inspiring), a shift in chemistry, your own nervous system, self doubt (this one definitely has a feel to it), something that takes your breath away and the list goes on. Feeling the hope or hopelessness a doctor offers is another feeling experience. Volume and frequency can also play a big part. As the experts say...sound is a form or energy. The volume of that energy can have an impact. The intensity or how much of it we feel has an impact on us. How often we feel it, how many cycles of it we experience (aka frequency), also can play a part.

Life is an energetic experience. How we experience the energy between our self with all our energy systems (nervous system included) and that beyond our self can be relaxing, invigorating or highly disturbing.

Btw, have to agree it's up to the hospital to manage covid, how it spreads and how it doesn't spread beyond a certain point. The set up the ED is perhaps a little questionable. It's partly the hospital's job to make sure you don't end up with covid the second you enter through those doors. Part of their duty of care. I'm so glad covid hasn't hit you too hard.

[HopelessLes]

It's true, I have learned a little. I wish I could learn more though.

I'm definitely a 'feeler'. A doctor I saw recently asked me - after reading my history - if I consider myself a sensitive person, I said,"Very much!" And I guess that's a major part of my problem - I guess the feelings amplify each other. It's OK when there's a balance, gets tricky when the bias is more toward the negative, but in my case the Depression has taken away all the positives. Even just thinking about how I used to feel makes me very, very sad.

Things that would usually have a positive effect actually make me feel worse. I simply do not know how to handle this. All I feel is hopelessness, sadness, emptiness, pain, despair. All the good things have gone. Things that would usually be slightly emotional (like poignant ads on TV) make me break down. "Happy" things either do nothing, or make me sad.

The over-abundance of negative experiences - even minor ones - should have been manageable. But the lack of, and loss of, positive things is what's done the damage.

On some level I realise that this isn't all "real"; that it's the Depression making me feel this way. But the longer it goes on, the darker it gets, and the more convincing it becomes...

So far my COVID symptoms have been very mild - no headache, only slight fever for a short time, slightly runny nose, no loss of smell or taste or appetite, no gastric symptoms. Just a tickly throat and slightly productive cough today. Throat isn't noticeably sore any more.

[therising]

Hi Les

I'm glad your covid symptoms have been mild. You definitely don't need the stress of seriously concerning symptoms, that's for sure.

Looking back at my years in depression, I recall the lack being one of the most challenging aspects. There was just so much of a lack or lacking - a lack of happiness, of calmness or peace, of reason, answers, constructive philosophy, a clear path forward, constructive relatable guidance, self understanding and the list goes on. Since then, I've had a fair bit of practice over the years in pulling myself back from the brink of depression. I think it's those times which have brought the philosopher and analyst in me to life.

I've found when I'm on the brink and feeling incredibly down, there's typically always a lack of something at play. Whether it's a lack of clarity or answers when it comes to the mind altering challenge I'm facing, a lack of support or understanding from others, a lack of solid direction or planning, a lack of energy needed to get through something deeply challenging or a lack of the right kind of chemistry to kick me into gear, there's always a lack of something. I'm a shocker; I can spend days analysing the hell out of everything all to get to the bottom of what's lacking. I think there's a need to develop philosophies in life, in order make greater sense of life. The amount of times I've had people say to me 'You have to stop over analysing everything' I've lost track of. I do it because that's how revelations come about, through analysis. Whether we employ a psychologist or we kind of become our own psychological detective...whatever works.

While it can feel like a curse being a feeler, it also has it's perks in some ways. I suppose a simple example might involve walking from the front gate of your property, through the house and all the way down to the back yard. How does the letterbox make you feel? For me, blahh, old and rusty. The garden, love feeling the impact of the aroma of lavender and roses. The walls inside feel boring. A certain family member feels draining and depressing. How would it feel to replace the letterbox with something outstanding where people say 'I love your letterbox, it brings me so much joy'? Could the front yard be the go to place for aroma therapy, after planting more roses or lavender? Repaint the walls and manage emotional detachment when it comes to that family member. Getting a feel for the little things that are 'off' is sometimes a good start toward change 🙂

[HopelessLes]

Really struggling tonight. I saw the psychiatrist for the second time but he was much less helpful and the meeting was only 5 minutes or so. He wants to retry a medication I tried for a short time previously, but I'm not at all confident.

There's only one other patient in this section at the moment and he's pretty much non-verbal. The last few nurses have been less than friendly. I feel I need to talk because I feel so absolutely terrible, but there's nobody.

[Croix]

Dear HopelessLes~

That's a bit disappointing, the psychiatrist sounded more promising last time. Do you think he simply has not read the notes or devoted sufficient time to you?

Sometimes I've found I have had to be pretty proactive and set out where I think there are problems. Unless he has some convincing argument to retry a previos medication I'd not be that confident either.

How are your Covid symptoms going?

Croix

[HopelessLes]

I saw the psychiatrist again today and he explained that they can't start any new medications until at least two weeks since I stopped the previous ones. This seems far too cautious, considering I made the exact same change last year with no delay at all and had no issues!

He did mention the possibility of adding on a medication similar to the helpful one, but I don't think that will be happening for a long time... At this stage I won't even be STARTING a new med until some time next week, and then it will likely be many weeks before it works - IF it works 😞

Every day is so painful and so slow and lonely 😞 I don't know how I'm going to get through this. My mood just gets lower and lower.

The only thing to look forward to is the food. But since I've been in isolation my meals have been reduced for some reason.

Luclily my COVID symptoms have been very mild - no worse than a cold. I have mostly recovered, just a slight cough remaining.

[Croix]

Dear HopelessLes~

I hope the psychiatrist made sense - apart from just manipulating meds. I've been down the tail-off/ramp-up procedure for a fair few meds, a tedious process. I agree it is probably being overcautious, however medical people are very risk-averse and I guess one simply has to go along wiht it. Is this the meds you were on before?

Yes, being in hospital is boring even if safe., do they have wifi or streaming tv etc? I spend all my time reading.

As for the meals, can you ask for larger portions if these are inadequate?

I'm glad you are getting over the Covid, I guess boredom goes hand in hand wiht not being very ill:(

I hope you find a nice staff-member wiht time to chat.

Croix

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