Thanks for the replies everyone. I'm not feeling well enough to reply properly right now. Didn't sleep well and the thoughts won't stop. They get stronger and more insistent the more I try to fight them. I'm exhausted and starting to feel unsafe.

Feeling a little better today. I had a complete breakdown while talking to the Dr and he got the message that I'm in an extremely bad state. He has agreed to try ECT. Such a relief to finally feel heard, and that help should be coming soon. There will be a wait but at least SOMETHING is happening...

I am so glad you spoke to a doctor!! We are ALL human and there are just battles we simply cannot fight alone

Hi Les

So glad to hear there's some progress being made. People don't always understand what long term depression can really do to a person. It painfully chips away at a person over time. I've found that sometimes a breakdown can be a good thing, under certain circumstances. Sometimes it can really break things down into simple form, for those around us. Simply, things have become unbearable for you and I'm glad the doctor finally recognises this. If a breakdown is what it took, so be it.

Hope you experience more progress tomorrow. Feeling progress is definitely fuel for the soul.

Morale is at an all-time low.

A pipe burst and took out one of the main electrical circuits - there are no lights in the bedrooms, showers and toilets, and no hot water. We've been told it will be several days before it's fixed.

Meanwhile there's been a large turnover of patients and several of the new admissions are very rowdy and abusive to the staff and other patients. They have been smoking indoors, in the common areas. Given that this is a public hospital it's illegal for them to smoke at all, let alone indoors. But nothing has been done to stop them.

My anxiety is severe. I had about 2hrs sleep and can barely leave my room. I'm in a double room but fortunately on my own at the moment.

I have signed the consent form for ECT but otherwise no progress has been made.

Conditions are a bit better today. The power and water are back on and the other patients have largely calmed down.

My mood is stuck at 0.5/10... I feel absolutely no positivity and no chance that the treatments will help. This is the feeling I need relief from - I need a positive change, I need hope - even the tiniest bit. But my brain isn't capable of positivity any more. The re-started meds have done nothing so far. I still haven't heard how long the wait for ECT will be.

Hi Les

Glad the power and water are back on and everyone's calmed down a bit. Interesting how people prioritise what they believe is urgent. I imagine if you had a problem with your 'waterworks' down there and your overall power/energy levels, things might move a bit faster in your favor.

As I've mentioned before, people don't always realise how seriously debilitating long term depression can be. Years in depression can feel like years of playing some kind of waiting game - waiting to come out of it, waiting for the revelations that can make a difference, waiting for meds to kick in, waiting for the right one to work, waiting for people to better understand all the ways in which depression can impact a person, waiting for the right specialist to come up with an amazingly positive plan and so on. So, when people keep depressed folk waiting for something, being led to wait yet another time can be highly triggering.

Then you can become a little bold about it all perhaps by asking questions like 'Why am I being kept waiting for this new treatment?' or 'Why do I have to wait so long for an appointment?'. I think we just have to cop the label of 'Difficult' or 'Confrontational' or 'A little aggressive' and wear it as a badge of honor because, at the end of the day, we're honoring our self in the process of 'being difficult/confrontational'.

I think losing patience or losing tolerance isn't always a bad thing. I've had moments in my life where I've 'lost it' before and couldn't help but wonder 'Where did that come from?!'. To be honest, I'm quite happy for the maniacal cow in me to come to life on occasion. She gets the job done when people around need a serious wake up call. The maniacal cow leads people to mooooove it, creating a bit of motivation :)

You're a patient and tolerant person Les, beautiful considerate qualities in a person. Don't let people take advantage of your lovely nature.

ECT was supposed to start today. Went through all the stress of the prep (fasting, moving to another part of the hospital etc, only to have them cancel it as the anaesthetist didn't show up. The next available time isn't until Friday :(

I was so devastated, once I got back to my bed I self-harmed for the first time ever. The nurse gave me some meds to calm me down but they usually don't do much.

Hi HopelessLes,

Thank you for sharing an update. We’re really sorry to hear you’ve had this really difficult experience, preparing for ECT only to have the appointment moved. We’re really sorry to hear that, but we’re glad you could share this here. Hopefully we’ll hear from the community soon, who may be able to offer some understand, and perhaps some ideas for the next few days as you await your new appointment.

We’re reaching out to you to offer some support. If you’re struggling with thoughts or feelings about self-harm, please reach out directly either to the professionals with you there, or by giving ourselves or Lifeline a call. If you’re not able to do so, please know that we’re here, and in an emergency the number to call would be 000.

Previously, community members have mentioned an app called ‘Calm Harm’ being really helpful for managing self-harm urges, in case that’s something you’d like to have a look at.

Thanks again for your bravery and openness in sharing here, HopelessLes.

Kind regards,

Sophie M

Hi Les

To say that's disappointing is an understatement. No wonder you're so upset. I feel for you so very deeply. It's their responsibility now to get you through to Friday. Whatever meds it takes, that's what they should be managing with, as well as encouraging you to talk openly about how you feel and how the disappointment has really impacted you. Be completely honest with them Les - Tell them, if the meds aren't good enough, they need to do better in finding what works for you. That's their job. They need to manage this in every possible way that serves you best. Anything short of that isn't good enough.

Thanks so much therising.

They have me some meds but they didn't do much really.

I told the Dr (Registrar to the main Psychiatrist) about my self harm. I think she got the message I'm no longer safe... She asked me what help I need to get through, but I didn't have any ideas. Nothing really helps my feelings and thoughts. Talking might help but there is nobody available. I have repeatedly asked to talk to a psychologist or social worker but nothing has happened. She suggested I talk to the nurses, but I've tried that and found most of them are not willing to talk (plus they're too busy anyway)

There was one lovely nurse who had a chat a few weeks ago, but she hasn't been in in a while - on leave I guess.

Thanks Sophie, I'll check out the app.

Are you wanting help?

Help is there if you are willing to accept it it.

I did.

I had my first ECT treatment yesterday. As far as I could tell, it went well. I had a very sore muscle on the left of my jaw (from the treatment itself) and felt very weak for a few hours from the muscle relaxant. Later in the day my whole body ached a little but nothing major.

Today when I woke I could barely get out of bed - almost every muscle is SORE and movement is difficult.

I haven't noticed any memory problems. My mood is perhaps a TINY bit improved, but still a very, very long way to go.

Many people say they don't remember the few hours before and after each ECT treatment - I remember right up to the point the anaesthetic knocked me out, and I remember trying to wake after the treatment was finished. Hopefully that might mean I won't have too much impairment - memory loss and alteration to concentration, decision-making etc was the main thing I was worried about. SO FAR it seems fine. But I will have to see what happens after the next few treatments...

Dear HopelessLes~

Well, I'm glad for you that the treatment has finally started. I'd imagine it can be a worrying experience as it may be difficult to know what to expect and the extent of any side-effects.

The muscle soreness is an established side effect, as can be some short-term memory loss. This is in Beyond Blue's summary

https://www.beyondblue.org.au/the-facts/depression/treatments-for-depression/medical-treatments-for-depression/electroconvulsive-therapy-ect

and also that of the Black Dog Institute

https://www.blackdoginstitute.org.au/wp-content/uploads/2020/04/2-electroconvulsive-therapy.pdf?sfvrsn=6

One tip I noticed which seemed pretty sensible was to take a note of things like passwords in case they temporarily escape you recollection.

While this therapy has a good reputation I'd suggest frequent regular contact and assessment after treatment, particularly if you notice something that is worrying you. You are in charge after all and can decide at any time what needs to be done - or not done.

I really hope it helps. Please let us know how you get on

Croix

Yeah hope it works.

Hi Les

So glad you're making progress. Trust yourself when it comes to this new experience. If you feel the need to question, go with that feeling and question. 'Why am I feeling sore? Why am I feeling tired?' etc etc. You deserve a full understanding on what you're experiencing. You're in charge of the experience Les. Others are simply there to take you through it, explanations included. You're the boss Les.

Hope next one leads you to feel a positive significant difference.

Thanks for the replies everyone.

I had the 2nd treatment yesterday. I didn't have as severe side-effects from the anaesthetic and muscle relaxant (I expect they adjusted the doses), but I have noticed some minor memory impairment. However my mood has definitely not improved. I felt a tiny improvement on Friday and Saturday, but that must have been due to the relief of something finally happening, rather than a true response to the treatment. Sunday I felt awful again and yesterday I actually felt worse after the treatment. I slept longer than usual last night and had to go back to bed after breakfast. Still struggling to stay awake now after more than 11hrs sleep...

I'm a bit worried that my greatest fear might be happening: that the anaesthetic is making my sleep disorder (Narcolepsy?) worse... I definitely feel less AWAKE than I felt last week.

Feeling terrible today. I really can't tell if I'm awake, or asleep and dreaming. Everything feels far more detached and meaningless than usual, and that was already a major problem... I can only hope that the next ECT session helps. If things get even worse, I won't be able to function at all. I'm already much worse than I was on Sunday. Can't think clearly and I feel as though all my memories are much more distant than they were.

Hey hopeless. When I had ECT I didn't notice any positive effects since until about the 4th or 5th session. This is usually the case with most people, some take more.

Im sorry you feel so horrible. It must be a nightmare to be in this space. Please dont give up.

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.

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.

 

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.

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...

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...

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.

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.

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. 
 
 

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

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.