Sunday, 8 January 2017

4 months on- grateful but glum...

4 months ago today, I was admitted to the neurorehabilitation ward. I had no idea I'd make such significant progress, but also had no idea of the challenges I would face along the way..

(TW: mental health)

My time in hospital, and the utter terror it triggered as a result of my PTSD (from things that happened in hospital), caused me some really frightening mental health difficulties. I wasn't sure whether I'd ever again be totally sure of what's reality. I suffered what are apparently known as 'overvalued ideas' - an experience just short of delusions. I thought the staff were wanting to, and planning to, harm me. I believed I was being recorded and monitored. I was convinced I was being sectioned and sent to a mental health unit. I 'heard' the staff saying awful things about me. I experienced so much that didn't happen. The experiences were scary as hell, and the realisation that they weren't real and my brain was tricking me was far scarier..

There were times that the horrendous affect on my mental state, and the ongoing belief that the staff wanted to harm me, made me seriously question whether I should discharge myself. The only things that stopped me were knowing that my PTSD would be even worse if I left then, knowing the staff were very supportive of me during actual conversations, knowing I'd struggle to get the help I needed in the community, and knowing I'd very likely resort to suicide if I left hospital with my physical and mental health even worse (as I'd have been giving up on the admission that was my only reason for hope).

I'm glad I went though. And glad I stayed. The improvements in my physical functioning over the last 4 months have made a significant difference to me. All the help that was set up on discharge has also really helped. Plus, importantly, the admission has not been detrimental to my mental health long-term.

Although my mental health is no worse, it's definitely still shaky at the moment. I have people constantly telling me how fabulous my progress is and how delighted I must be.. At times I have been delighted, and I'm fully aware of how far I've come, and how incredibly lucky I am to have made so much progress. But I'm not as happy as people think I should be. Nowhere near. To an extent, yes, it's depression clouding my view of things. But it's also an appreciation of the battles I've faced already to get this far, and the continued challenges, frustrations and uncertainties ahead, plus the current ongoing symptoms and pain and crushing fatigue etc- yes, I've made great progress, but things are still so far from how I'd like them to be.

I also have mixed feelings about the new year. I should be excited about the year ahead because I'm meant to be moving into my own flat and gaining greater independence and moving forward with my life and I'm making progress and things look far better than last year.. But I know there'll be massive struggles in the year ahead, I don't know when the progress will stop, I still feel miles behind my peers, and I still feel like rubbish, with big barriers to living a 'normal' life.

I don't want this to be entirely negative, because I'm doing well. I'm able to take some unaided steps now (!!), my co-ordination is improving, my seizures are normally not so convulsive, my balance is improving, I haven't experienced any overvalued ideas since leaving hospital, I've only had one slight panic attack since leaving hospital etc etc. My depression and my persisting level of disability are problematic though.

I find it difficult to distinguish between what's depression and what's simply understanding my circumstances. I don't think there's a clear line between the two. Yes, wanting to hibernate, lacking motivation, negative thinking, feeling hopeless, not making much effort to stay in contact with people etc are symptoms of depression. I can recognise that. But I also know I have reason to be depressed, and I feel like I'm thinking logically and rationally about everything..

It's hard to explain, but it's quite isolating when everyone seems to think you should be feeling differently to how you are, and you're shutting down/shutting people out to an extent, and you're going through an experience that few can appreciate and empathise with.

Maybe all this is over-sharing, but I just want to be honest with people. And I'm sick of hiding things because of stigma, and I can't be bothered to battle with myself about what's 'appropriate' to share. So this is where I'm at. The unedited truth. I know I'm lucky to have made progress, and I feel guilty that I'm not more delighted when others aren't so fortunate, but things are still very tricky. I'm working on my physical and mental health and hopefully will continue to make progress. I'm being totally open and honest with the healthcare people working with me. It'll be interesting to see how I feel about things as time moves on..

I think I'll leave this there, as my sleep-deprived, depressed, exhausted brain can't handle much more, but thank you to everyone who continues to be kind to and supportive of me. It means a lot.