I knew I still looked like me, but I didn't feel like me.
Card from my 10 Year Old Daughter
Olivia pleaded with me to get better.
Haywood Hospital, Stoke-on-Trent
Early Recovery Thoughts
I was a little disappointed at first to lose my single room when I was moved onto a ward. With hindsight, it was a little bit closer to the normality of dealing with people, such as patients with TVs being too loud or doing a lot of swearing.
The recovery centre was great, the staff were fab, the food was fine. The cooking class I did was really helpful, I achieved something (make porridge) I wouldn't even do on the outside.
I couldn't figure out all the different staff role names used, e.g. neuroxxx / psychiatriast / psychologist. It was bewildering, and even after discharge I still became frustrated when arranging follow-up appointments and being asked if I was referred by neuro or psych. I looked at a staff member's email signature which described her working for a Consultant in Rehabilitation Medicine and a Clinical psychologist (neuro-rehabilitation). I knew this was necessary for professional reasons, but as a patient I also felt I needed to understand these different terms / roles so that I could understand "who was doing what" with me. It's similar with the names for the University Hospital North Midlands or Royal Stoke Hospital or City General - it always ended up being "the hospital near to Newcastle." I imagine it may be understood by clinical professionals, but for Ruth or my mother or myself, it was a potential minefield of misunderstanding.
Early Recovery Observations
I became tired of trying to explain how I felt - I used the term cloudy, but nothing could ever explain how my brain trauma felt. I have now regained a reasonably healthy command of English language, andI can still remember what thoughts crossed my mind, but I am at a loss to properly 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" (hospital discharge) despite getting as much advice as humanly possible from the wonderful staff. 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 our two hour visits.
Measuring my recovery progress appeared to me to be arbitrary. I may 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 in the centre and I inadvertently blanked them out.
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 - she was wonderful.
For the IT savvy, a wireless network and an IT buddy would have been helpful in enabling patients to feel less isolated.
The term recovery was confusing for me, as I wrongly interpreted recovery as meaning getting back to how I was prior to my injury. 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 helped me feel like I was making progress.
I'd like to have had visits from TBI survivors - only by asking questions and getting responses would I really believe that someone had been through anything similar to what I went through and made a satisfactory recovery. I sympathised with recovered people that I saw, but didn’t engage with them enough to really understand they suffered as severely 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 many types of injuries or illness can result in trauma.
Some great advice I got from a 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.
Accepting 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 something important such as planning to go to the bank that morning. I went through a period of trying to understand what was causing some of my symptoms, it was a bit like testing myself, I decided to simply accept that there may be no rational explanation... end of story!
Haywood Hospital Diary
Friday 2nd October 2015
Ruth here at 09:00 on a Friday. Caught end of occupational therapist tests for standing, walking, turning, etc. Went over to Hartshill for eye tests in ambulance just after nine. Felt I did everything satisfactorily. Tests finished about 10:45, I then had an appointment with Ruth regarding my planning, back at main 'Heathfield' centre. There was a cock-up with the ambulances, so ended up not getting back until 15:00. A long wait for me, but must have been incredibly tedious for Ruth.
When we did eventually arrive, Les Phillips was in Heathfield reception, so it was lovely to catch up with him. Ruth was very patient and pleasant throughout and really lovely - digging a deep hole in my heart.
Later on Olivia came, as well as Charlie. They were both on good form so it felt like a lovely family experience. I should count my lucky stars.
Saturday 3rd October 2015
Was raised at 08:00 for toilet, bathing, cleaning, etc. which was excellent. Feel like I'm gonna do my exercises and my Lego and enjoy Saturday for a change. Had full wet shave from member of staff which was great. Phoned Sue at 10:00 and had a lovely catch up.
Done half the Star Wars Lego, but have got stuck doing the assembly *Finished it.
It was lovely to see Mick and Val about 15:00, they were very kind and interested. Ruth came at 18:30 and we had a really lovely evening. She bought some essentials like mouthwash and bodywash which were very welcome. But mainly it just felt lovely chatting to each other - an area in which I feel I have improved this last week. Ruth left after ninety odd minutes - wow - gorgeous face and body - I'm mad about her!
Sunday 4th October 2015
Up at 07:00 for a sit down shower which was very welcome. I feel clean and refreshed right now (at 08:00). I've washed everywhere and shampoo’d twice and scrubbed clean - ace. Had a porridge breakfast in day room - still no conversation to be had. I had a toilet session in the bathroom and felt much healthier. Update: after shower I was measured as low body temp and given a blanket. In truth, my fingers and toes were freezing and I did all sorts to warm them up. By meal time and a toilet break they were much better. I have taken direction in how to put foot plates on wheelchair - yes! Time of this paragraph 10:15.
Made the rabbit Lego in the day room, it took an hour and my fingers are exhausted.
I got rather tired about 12:00 and really fancied a lie down. Had second lunch of cauliflower cheese, but had a coughing fit after (we think) having too much black pepper.
I slept really well with no painkillers and felt knackered getting myself up at eight - no complaints though.
Monday 5th October 2015
Dragged myself out of bed at eight and had a lovely big helping of porridge. Therapists had two physical assistants take me through a wide range of leg and arm movements which was very satisfying. I pushed quite hard and it was very tiring in the body.
Long morning in my chair - I tried and failed to get the Nationwide App on my iPad working. I am planned to do a walk this afternoon with physical therapists, but apart from that it could be a bit slow.
I had a chicken lunch, then seconds of a vegetable tikka - which seemed so much stronger than everything else I have had, but was very nice nevertheless, and no problems with coughing or anything.
I spent the afternoon lying in bed. Later on I did those walking sessions which went very well just outside my room, staff were positive and so was I. Blood pressure was measured as 94, which is a bit low apparently - but nothing to worry about. I saw Ruth at 18:15 and we had a lovely time, she's so special. I am lucky to have her.
Slept through to 08:00, very well, just a cough - managed 05:00 wee break to mix in.
Tuesday 6th October 2015
Up at 08:00 in good order and a toilet break. All is well and I feel great. Blood pressure was measured at 108 - though this is straight after my porridge breakfast, don't know if that makes a change! Might be a quiet day today as I need to get some recording and video ready on the iPad.
Did my physio exercise during the day around 14:00, it was limited to just abs mainly, but I became knackered. I slept on the bed for two hours. Tea was a fish concoction that was puree rather than pre-mash - I asked for the latter but - no chance!
It's now 18:10 and I'm just waiting for Ruth and mum to arrive which is very exciting. I feel that I'm becoming more self-sufficient, and when I get a bit more strength / co-ordination / brain ability, I'll be a more useful person.
Changes in staff are a little weary. I think the physio girl who was good had left for another job, and the occupational lady is off long term sick with her child. The shoulder bloke is weirding me a bit. Karen is definitely the star assistant - always a good help.
Wednesday 7th October 2015
Nice self-get up at about 08:00. Did mentality and eating tests - mentally good, though recognised the risk of not having thickened juice after a coughing fit. With speech language and swallowing team. Did some painting but then got a long back pain. Moved onto my physical health team and did walks, lunges, twists, etc. It went reasonably well, though the legs do tire very quickly. I had a towel fitted to my wheelchair to try to reduce instances of back pain.
Thursday 8th October 2015
Full, busy day with lots of physical exertion - very good.
Ruth came about 18:30 and it was lovely. I did FaceTime with Olivia for an hour later, she showed me her new dressing table / chest of drawers.
Friday 9th October 2015
Up at 07:30 by Russian lady for very severe clean and preparation for next task. Did porridge breakfast for myself in the kitchen, which felt good to be doing a real task. I tidied room up and I am rather tired, I think this afternoon I'll do a bit of leg exercises then shut eye until Olivia comes about 18:00.
I had a lovely afternoon with Ruth where she was a bit fed up with work, but planning a nice, simple evening. Olivia arrived about 17:30 and it was lovely, just having proper, intimate conversation without her having any other distractions. She was very open and engaging, it was a delight.
Saturday 10th October 2015
Good sleep, better porridge (less thick than mine). Had a birthday call from Sue / Keith (sister / brother-in law) which was lovely, then a birthday call with Laura (niece) which was fabulous. I learned about her plans for Thailand, Brazil (Amazon river) and then Canada - probably happening in April 2016. She's very confident that she can get work again when she comes back - and so she should be. Did putty exercises in morning and gave myself a good clean up.
Original photos of the transcribed diariy entries above can be downloaded by clicking on this link.
Later Recap of Thursday 29th October 2015
A previous colleague of mine, Phil Dear, from my last place of employment (Met Police, London) came to visit me. I was an IT security consultant and Phil came to see how well my recovery was going as I was deeply involved in some important work for the Met. I'd last met with Phil on 16th July 2015 in London. I thought I was recovering really well and might be available to return to work for the Met Police in a couple or three months. Little did I know that it would be two years after my TBI, before I set foot in professional employment again, back with the Met Police, in July 2017.
When I emerged from my coma, I was surprised to find I now wore nappies.