It’s Never Over….

When I started to think about writing a blog, I wanted to put the posts in a rough order of how they happened (or at least how I think they happened!). I’ve yet to bring an end to my journey in ICU and beyond and there will be a post about that soon. But I want to fast forward to the here and now for a moment.

If you’ve read through my posts (if you haven’t, why not!), you’ll know that a few months after discharge I was diagnosed with PTSD as a result of severe trauma, delirium and post-intensive care syndrome. I received so much support and therapy at the time, learning to accept that things will periodically come out of the ‘box’. As life has gone on, I’ve taught myself how to deal with triggers, something that I’ve had to do quickly at times given that I’m a volunteer in a hospital. Beeps, sounds, equipment, smells and even medical conditions face me regularly, but it’s always been ok. I felt good, in control and happy knowing that I was helping others.

Life goes on. We all try to battle through, ignoring our inner voices and pretending we’re just imagining everything – those feelings that make us feel not quite right, not ourselves, but not being able to pinpoint why. I work full time and in my ‘spare time’ I volunteer at the hospital, undertake public speaking, network, educate, offer guidance and advocate for others who have been in a similar position to myself. I do it because it’s important to me – to help others, to improve patient experience and to show how valuable the patient’s story and perspective is.                                                                              There seems to be a huge assumption around recovery – that you reach a point so many months/years on and you must be ok. Any ‘after effects’ of your illness are now part of who you are, and life goes on.

Sometimes the little things mount up. Things we hear or see add to the pile. When you start to feel ‘wobbly’, you brush everything aside. ‘You’re just grumpy or fed up’. ‘You just have to deal with ‘it’’. You try to work everything out for yourself and have the odd good day but more bad days. Nothing seems to make it better. Someone recently said to me ‘How can you get PTSD from being in hospital, as though it was completely impossible………I treated the comment with the contempt it deserved.

Several weeks ago, something happened. Whilst volunteering I visited a ward. It was the ward I was admitted to whilst recovering from the initial surgery. I know this because my family told me, but I have no memory of it, at all. I wasn’t worried about going onto the ward – I had no memory so why would I? As I walked through the doors though, it hit me like a brick wall. A real feeling of déjà vu, a feeling of it being familiar whilst at the same time not recognising any of the surroundings. I stopped to look up and down the ward. I had never been here before, to my knowledge. I felt as though I was behind a glass wall seeing everything going on around me but being held back. As I walked towards the patients room the feelings got worse. My heart was pounding, I was sweating and fighting back the tears. I felt the same panic I’d felt standing in outpatients shortly after discharge. As I was trying to calm myself down, an Army medic walked down the corridor with metal heels on their shoes. The uniform looked familiar but the sound……the sound of them tapping their way down the corridor sent my head in a spin. I clenched my fists and almost felt danger. What was going on? Despite everything that was happening, I had to focus on the patient I was seeing. It took all my strength to block my emotions out, but the patient needed me more. When my visit was over, I walked as fast as I could off the ward and flopped against the wall in the corridor. The further I walked away from the ward, the better I felt. But then confusion set in. What had happened and why? I was exhausted, confused, emotional…. I just didn’t understand.

In hindsight, from that point on it was a slippery slope. Although I hadn’t noticed (or perhaps allowed myself to notice), I was getting worse each day. Trying to plod on as though everything was ok. Odd conversations with people ‘in the know’ of what it might be. When I allowed myself to admit it, I could see the signs of my PTSD slowly creeping back. Desensitisation – not remembering journeys or doing things; That weird, confused feeling of knowing something wasn’t right but not knowing what; Increased brain fog; Lack of interest; Exhaustion; Wanting to run away. I began feeling the same as just before being diagnosed with PTSD. Still trying to battle on, I began reaching out for help to see if I could solve it on my own, but no amount of googling or chatting was going to solve this!

A colleague suggested I talk to one of our mental health first aiders. They were lovely but set the wheels in motion as they suggested I seek more professional help. Instinctively my first point of call was the ICU follow-up team. There was a 6 month wait for a referral to the psychologist and not wanting to waste their time, I instead asked if I could re-join the post ICU support group, which I could. I feel very fortunate that my hospital has such a fantastic ICU rehab team and lucky that I’m able to return to their service whenever I feel the need. It’s so important to be able to talk to people who know and understand, and I know they always have my back.

Our mental health first aider signposted me to our employee health programme (which provides counselling). It was also suggested that I speak to a GP. I didn’t want to waste anyone’s time and obviously played the whole situation down to the receptionist when trying to secure an appointment. To my surprise, the GP rang me back quite quickly. Normally I have to explain my history but this time, they had taken the time to go back through my notes. After a long conversation with many probing questions, they came to a diagnosis.  I’d had a relapse of my PTSD and I was to be signed off work, along with being given counselling and a low-dose medication.

It hit me – everything over the past 3/4 years had caught up with me and the incident on the ward was the tipping point. How on earth was I going to tell everyone? I looked fine…..nobody would believe me! I chose to only tell my family and a couple of close friends (until now!) It wasn’t an easy thing to do, feeling like a failure because I’d gotten to this point. Having to take time off is strange – I was told to do things for myself, to rest and do nice things. I’m not used to doing things for myself and to be honest I’m not sure what I’m supposed to be doing! I’ve had lots of early morning dog walks, done lots of tidying and washing, housework, the usual running around, written this blog post, caught up on emails, done a few admin bits……….but is that doing things for myself? What is that exactly? I’ve been trying to learn Crochet for almost 2yrs, but I always feel guilty for giving myself the time to sit down and do ‘nothing’ when everyone else around me is busy. Perhaps that’s part of the problem!

As I come to the end of my second week, I’m now beginning to think about returning to work and volunteering. I’m worried about having time off and then having to return to everything as though nothing has happened. How can I ease myself back into things when really I just have to get on with life. It’s such a difficult balance to make and once again I’m faced with that ‘You’re back at work now so you must be ok’! Someone recently mentioned that PTSD doesn’t resolve itself overnight and that I’m too hard on myself. They’re probably right…….

My PTSD stems from ICU, the trauma, the experience, the whole package. And the reality of ‘Yes, you very nearly died’!        But what is happening to me can and does happen to anyone who has experienced trauma of any kind, no matter how big or small. It’s the same as ICU in the respect that it doesn’t matter what put you there or how long you were there for – the consequences are all very similar. You may be given treatment, guidance or tools to help you cope. In that period, you begin to feel better, like you’re coming out the other side. What nobody can prepare you for is having to deal with a mental health condition in everyday life. You have a blip (or in my case a big blip!) and everyone rallies round. But then as time goes on and you begin to improve, you must be better….right? It’s the same as discharge from hospital – after a few days at home, you must be better because you’re not in hospital anymore! So within the recovery period, you also have to arm yourself with tools for the future, because most people will have forgotten where you are now.

My PTSD will always be a part of me, sitting on my shoulder like a little goblin, generally getting on quite well. Occasionally it likes to remind me of its presence but using techniques learnt through ICU follow-ups, the gremlin gets told to be quiet.                              Being allowed to take time away from everything is beginning to help but the pressure of needing to return to work and normality is very much real. Hopefully the counselling will have a positive impact and it’s a great comfort to be back in the ICU support group. It was hard going back, seeing as I left because I felt I no longer needed it. But everyone understood, if you’ve been in a similar situation, you just get it. One thing I’ve realised is that it will not be a quick fix, and to not put too much pressure on myself.

Every step back to normality will be a massive hill to climb but people have my back and I will get there.

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