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]

Hi Centaured

I'm trying not to worry but it's very difficult not to, considering my sleep/wakefulness problem was already progressing and the ECT seems to have possibly accelerated it... I'm not expecting any improvements to my mood yet, but I wasn't expecting my energy to drop so much either!

On top of it all, I've developed another respiratory infection. Hopefully not COVID again... I expect Friday's treatment will be cancelled anyway.

[Chris_Tas]

Try to stop worrying.

I needed (still need, I'm a work in progress) help so take it and look forward to happiness not worrying.

[therising]

Hi Les

Wondering if they explained a lot of the possible side effects before you started having the sessions, including how long it takes for them to wear off at the end of all the sessions and how long it takes before you start seeing positive results. As Centaured mentioned, it might take a while before you start experiencing positive results.

I imagine the side effects are far from easy to manage, seeing that they include factors you already find highly triggering, such as the lack of energy. Perhaps if you get the specialists to address your concerns, they might be able to reassure you. I believe it's important to be kept in the loop when it comes to how others are managing our brain. At the most, such information can help with managing intensely challenging emotions. At the very least, it's an education.

Hope you start to feel results soon and the respiratory infection clears up fast.

[HopelessLes]

Hi Chris_Tas: I wish I could stop worrying. But I know I can't...

I told the ECT team about my concerns before today's treatment. They would have been perfectly OK if I decided to cancel the treatment but I went ahead.

According to the nurse, I had a "big seizure movement" so we're hopeful it might be more effective... I certainly don't feel any better, but I don't feel as much worse as last time. I'm currently feeling very sad for no reason and crying a lot...

Hi therising: They explained the side-effects, but they're rather selective with the details... There's a lot of information about adverse effects that they likely aren't even aware of. Cambridge University has published a huge article about it.

I was a bit surprised they went ahead with the treatment considering I'm sick. But it's not COVID or Influenza A so I guess it was safe enough...

[HopelessLes]

Just found out it IS Influenza A 😞 I guess there was a testing backlog... Not sure what happens next, as the isolation unit is already back in use for COVID patients... There's one isolable room in the main ward, but I've heard other people coughing and sneezing already...

[HopelessLes]

I'm back in isolation again. In a small room by myself, not allowed to leave. I have absolutely NOTHING to do. Can't use my phone as I have to conserve the battery. I started a jigsaw puzzle the other day but it's in another room. I've read all three books I have...

Today's ECT was cancelled as I'm still sick - even though I'm significantly better than I was on Friday...

Feeling lost, neglected and unsafe. Nobody has told me how long I'll be in isolation. The doctor didn't see me today.

[HopelessLes]

Disaster. The anaesthesiologists have decided I can't do ECT again for at least 6 weeks. I have told the doctors I am not safe any more. They don't have any ideas. I can't go home as I'm no better than when I came in - in fact I'm much worse now.

What happens now? I don't know... I am in a completely intolerable situation with absolutely no way out.

[Sophie_M]

Hi HopelessLes

We’re sorry to hear you’re unwell and that your situation has not improved. We recognise your strength while you continue to work out what support is available to you while in isolation. Please know that you deserve to feel safe and supported during this time and we hope you can continue to talk things through with your health professionals to come up with a few support options.  
 
While you wait for further information, you may wish to reflect on how you can plan on staying well. Developing a wellness plan can be a helpful tool to focus on strategies to assist you through tough times like these.
 
Things you may wish to explore include thinking of a few goals for yourself for when you are able to go home, identifying your triggers and ideal responses to these triggers, things you like to do to keep yourself well, things you must do to keep yourself well, things you notice about yourself when you’re becoming unwell, and things others notice about you when becoming unwell. Maybe you can ask your doctor to go through a plan like this with you to assist with next steps?
 
If you have capacity to use your phone you may wish to have a read through the Staying Well section for helpful activities to do on your own (such as reading through a short story/mediation like this one here).  Or if you can, feel free to ring our Support Service to talk things through in the meantime - 1300 22 4636.
 
We hope that you can stay connected here and that things improve for you. 
 
 

[Chris_Tas]

I have lost so much over the years Les - But please remember as I do, there is always hope mate.

[therising]

Hi Les

That's so upsetting Les. I feel for you so very much, trying to managing so many deeply triggering emotions right now.

Do you feel like it's time to begin making greater demands on people, such as demanding to know how you're meant to be managing having so much time to think while you're in there. If there's one thing someone in the deepest part of depression doesn't want it's plenty of time to think or reflect, unless the thoughts or reflections begin to become constructive. Do you feel you can ask them something along the lines of 'How am I suppose to develop positive or constructive thoughts while I'm in here? How do you suggest I manage my time?'. As Sophie suggests, there's a need for them to come up with a plan.

If your phone's one of your lifelines, telling them that you're desperate for a charger as you rely heavily on your phone to help you manage your mental health should hopefully have someone give you a charger. I'd like to think this will be the case.

When someone takes something away they know we were looking forward to (in the way of helping us), they need to put something in its place for us to manage with. I like to think of constructive replacement as having two parts to it:

The 1st part - someone places a gift of sorts in what was an empty space. Now the gift is there (such as the gift or giving of the ECT to you). They come along and take it away, re-placing it somewhere in the future, which is a problem when you need it now. Now there's an empty space again. The 2nd part, the most constructive part of replacement, comes down to them filling that empty space with something else. They just can't leave it empty. Ask them 'What are you now going to put in place for my mental health, now that the ECT is 6 weeks away? You just can't leave me with nothing for 6 weeks, especially when I can barely make it through each day'. Don't let anyone dismiss this desperate need you have Les. You're there to have your needs met.