Discharge Early Days
I got fed up of trying to explain how I felt - I used the term 'cloudy', but nothing could ever explain how brain trauma feels. I now have (hopefully evidently) regained a healthy command of English, and I can still remember what thought's crossed my mind, but I am at complete loss to describe how it felt. I believe it is one of those matters which has to be experienced to be properly understood - and it's not a journey anyone takes by choice.
I wasn't prepared for the outside world - despite getting as much advice as humanly possible. Ruth spending a night by my bedside in Haywood might have helped her understand where my head was at - there must only be so much Ruth could have understood from two hour visits.
Measuring my recovery progress appeared to me to be arbitrary. I would have benefited from being told that the measures were not necessarily an indication or likelihood of a satisfactory recovery. I still seem to struggle accepting the psych tests that are done to me. I know I am going to be rubbish at the short term memory tests because I don't have access to any of my coping strategies - perhaps this is intentional. Knowing that I won't have coping strategies available makes me anxious and more likely to perform poorly - I don't like to fail at anything!
I'm sure there were activities organised and I blanked them out. However, for men watching a football match or women watching a cooking program might have been incentive to drag us away from our beds to socialise. I've contemplated going back in a 'pep talk' role: I'd like to give as many suggestions of coping strategies as possible. More appointments with consultants would have been helpful to give me confidence - there needs to be three of Dr Alex Ball.
Upon discharge I was handed to Sue Jones representing 'Community Rehabilitation Liaison' - she was an enormous help. Sue retired, but she advised that her role had been discontinued - she was invaluable for seemingly simple matters such as dealing with 'benefits' and the DVLA. Without Sue's help I would have been incapable of chasing up DWP or engaging with my consultant to help with my driving licence status.
For the IT savvy, a wireless network and an IT buddy would be helpful to patients feel more normal and less isolated.
I think the term 'recovery' may have been harmful for me as I wrongly interpreted it as being 'getting back to how I once was' - when it became clear that this would not happen, I felt I was never going to recover. For me, having some very modest expectations aligned to the term recovery might have help me feel like I was meeting goals and moving forward.
I'd like to have had more visits from people who have 'been there and done it' - only by asking questions and getting responses would I really believe that someone had been through anything similar to what I went through.
Some great advice I got from a particular psych consultant was to stop self-testing on my short term memory - until I heard these words I couldn't stop myself and thought it was a useful practice - however, it was entirely counter-productive. I hadn't realised how much apologising I was doing for memory related matters - I found it very difficult to stop - but I needed to be told.
Accept irrationality - some things just don’t make sense. The typical dilemma is that you can remember even inconsequential matters from thirty years ago but you can’t remember some thing important such as going to the bank that morning. I went through a period of trying to understand what was causing some of my symptoms - it’s a bit like testing myself - I decided to simply accept that there may be no rational explanation... end of.
I sympathised with recovery people that I saw, but didn’t engage with them enough to really understand they went as low as I did, I felt nobody could really have felt like I did and went on to recover. I always imagined trauma care was solely related to brain injuries - I hadn't understood that all types of injuries or illness can result in trauma.