In September, I was asked for an update on my condition by my income protection provider. Below is what I submitted:
Activities of daily living
Whilst I am able to carry out the majority of the individual activities involved in daily living, the cognitive load involved in doing so is very high, resulting in my brain becoming easily overloaded. This means that I have to limit the time that I spend undertaking such activities (e.g. cooking, vacuuming, walking the dog, reading and responding to emails), taking frequent breaks to give my brain a chance to rest in order to be able to complete them. The cumulative effect of this cognitive fatigue over a number of days means that I am sometimes unable to undertake certain tasks and so have to rely on others for help in getting things done. I am unable to keep up with the volume of work that is required to maintain the household and so pay for a cleaner to visit once a week and rely on my wife for support from day to day.
Over time, with the help of my occupational therapist and psychologist, I have worked out that the 3 things I find most challenging cognitively are:
- Planning and organising
- Processing information
- Decision making
Consequently, I try to avoid doing these things where I can – for example by doing things around the house as and when I notice them, rather than collating a list of tasks and then trying to work out the best order to do them in. My brain copes much better when things are spontaneous / instinctive.
I find shopping incredibly difficult. If in a supermarket or shopping mall, the sheer volume of information to take in (e.g. people moving near me, noise, items on the shelves) and decisions to make overloads my brain very quickly. Online shopping is similarly hard – checking the cupboards for which items are required in order to decide what to order is exhausting. I have adopted an approach of going to my bedroom to create the initial order – preventing me from checking the cupboards – then checking at the end for only the few items that I am completely uncertain about.
Difficulties with processing information mean that I tend not to socialise very much. I find it particularly challenging to engage in meaningful conversations with people where I have to understand what they are saying to me and formulate a coherent response – my brain overloads almost immediately. The best way I have found to describe this feeling is like the cognitive equivalent of gasping for breath – my brain just can’t keep up, no matter how hard I try. Indeed, the more I try, the worse it gets. I tend to fare better if conversation is very light-hearted / silly – my brain seems to overload less quickly, though things do still get too much for me after an hour or two, during which time I will have to take several breaks, stepping away somewhere quiet every so often to allow my brain to rest. Due to the cognitive difficulties that I experience when socialising, I sometimes elect not to attend certain events (e.g. large social groups where many people are talking at the same time, locations where it is difficult to find somewhere quiet to take a break). When I do attend a social event, I always either plan to arrive late or I leave early when I feel that things are getting too much. Even then, there will be a hangover effect for the next few days, during which my brain fatigues even more easily than usual.
For the same reason, I find reading and responding to emails very difficult. I have gradually learned to skim read emails and keep my responses brief in order to minimise the drain on my cognitive resources.
Completing this form has proven to be a significant challenge for me. I have tried to pace myself by spreading the activity out over a couple of weeks – taking around 12 hours in total to complete it – leaning on my wife and occupational therapist for review and feedback. Whilst the act of capturing the information has actually been ok – indeed, it has felt quite cathartic, helping me to more fully acknowledge and accept my limitations arising from my brain injury and also start to appreciate the things that I can still do – I have struggled to put the activity to one side when not actively doing it. My desire to do a good job of it – a function of my “completer / finisher” personality and perfectionist tendencies, I suspect – means that my brain has been unable to let go, leaving me trapped on what I call a “fatigue plateau”, where my brain is too spun up to be able to rest properly but by doing things I am fatiguing it even more. I know from experience that this will gradually abate over a week or so once I have submitted the form.
As things stand, I have not yet been able to get my driving licence back, despite having applied multiple times. My occupational therapist and psychologist feel that driving is something that I may be able to do – partly on the basis that it largely involves following rules and reacting to what is happening (i.e. the decisions have largely already been made for you and anything else is spontaneous / instinctive) and partly because they believe that I am now sufficiently aware of my condition and the symptoms that I would not attempt to drive if my brain was already fatigued. I am currently in the process of discussing with my doctor whether she would support a new application for my driving licence.
I find that exercise has a restorative effect on my brain function, almost like a recharge, albeit only for a short period of time (around 20-30 minutes) – I assume because it is largely spontaneous / instinctive and so does not involve the 3 things that my brain finds most challenging. I often use this to my advantage by exercising before attempting the most important / cognitively challenging tasks in my day (e.g. riding my bike to and from the Community Head Injury Service in order to attend an appointment). Unfortunately, the restorative effect means that in the 20-30 minutes when my brain appears not to be fatiguing so easily, I can sometimes push myself harder than I ought to (e.g. talking to people more than usual) because I am not feeling the cognitive fatigue effects as much. There is then a price to pay for this afterwards, with additional rest being required. The analogy that I often use is that if cognitive fatigue is like being drunk – it has its similarities (e.g. poor reasoning / judgement, loss of balance, inability to process information) – then exercise is like drinking a coffee. It makes you think that you are sober for a short period, giving you the impression that you are ok to drink more, when you are actually just making yourself more drunk (i.e. cognitively fatigued).
Although I enjoy exercise and its cognitive benefits, I do find that I struggle to control my legs whilst walking – perhaps because there is more time for my brain to try to plan, process information and make decisions, like where to put my feet. Running does not appear to give me the same problems.
Monday to Friday, I typically get up at 6:45 am. I undertake a few household chores – feeding the dog, emptying the dishwasher, making a pot of coffee – which takes me about 20 minutes, by which time my brain is starting to overload. At this point, I take the opportunity to rest my brain, sitting somewhere quiet on my own whilst drinking a coffee.
Next, I make packed lunches for my 2 children to take to school. Once the children have left for school at around 8 am, I find that my brain is starting to tire again, so I take the opportunity to rest it whilst eating breakfast.
After breakfast, I will do a quick tidy of my kids’ bedrooms, emptying their dustbins and collecting any dirty clothes before putting a load of laundry on. Again, my brain will normally be starting to overload at this point, so I will usually go for a lay down in my bedroom for 15 minutes or so.
Around 9:30-10 am, I am generally ready to take on my major challenge of the day.
If I have an appointment to attend (e.g. doctor, psychologist, occupational therapist, physio, acupuncture) then I will use this as an opportunity to fit in some exercise by riding my bike to get there. This enables me to minimise the cognitive fatigue arising from attending the appointment – previously, using taxis / patient transport would add to my fatigue levels due to interacting with the driver – whilst also giving me a sense of being a bit more independent. Even then, I find that my brain is overloaded by the end of the appointment, so I always take the time to sit somewhere quiet on my own for 15-20 minutes – usually with a cup of coffee – to let my brain rest before attempting to ride home.
If I do not have an appointment to attend, I normally aim to take the dog out for a walk around this time. I tend to find that I walk better at the start of the day before my brain has had a chance to tire too much. On my return, after an hour of walking, my brain is always fatigued – I am staggering and struggle to hold a conversation with my wife – and so I make sure that I rest my brain for 15 minutes or so by sitting somewhere quiet on my own. After resting, I will do some kind of exercise – taking advantage of the beneficial effects on my brain function by fitting in a more cognitively challenging task around it (e.g. folding the laundry in between sets when lifting weights, making an appointment or responding to an email after running on the treadmill).
Around 12-12:30 pm, I will shower then have lunch and rest in front of the TV.
By early afternoon, my brain is usually pretty fatigued, so I go for a lay down for 40-60 minutes. I will normally start twitching – my head pulling to the right side, more so if my brain is particularly tired. After a few minutes I will fall asleep.
When I awake, it can take a while for my brain to get going again – and for my legs to feel like they are my own – so I normally have a cup of coffee and sit in front of a daytime TV quiz show. After 30 minutes or so, I start to think about what else I need to get done that day – normally just making the dinner, though sometimes I will try to vacuum the house if it is looking dirty. A couple of times a week, my wife cooks the evening meal. If I have attended an appointment that day then my brain is too fatigued to do so, or it may just be that the cumulative fatigue from the preceding days is starting to take effect.
Around 5-5:30 pm, I start to make the dinner so that it will be ready for around 6:30. I have learned from experience that I need to keep things simple – sausage and jacket potato, burgers, chicken with sauce from a jar – using the oven rather than the hob so that I can take breaks while the food is cooking.
If I have managed myself well through the day and not done too much, I am usually able to actively participate in conversation with my family at dinner time. For a long time, this was not the case – I would push myself too hard with the activities of daily living and not have the cognitive resource left by this point – but over the last 9 months or so I have got a lot better at understanding my limits and the consequences of not staying within them.
After dinner, I typically just rest in front of the TV until I go to bed around 10 pm. I always read before going to sleep – it seems to slow my brain down, distracting it from the things that might otherwise be on my mind, meaning that I sleep better. Nevertheless, if my brain is particularly fatigued then my sleep will be very broken – I will typically be up in the night for an hour or more. This has been the case on several nights during the 2 weeks that I have taken to complete this form.
Whilst I have described the way in which a typical day might pan out, I try to avoid actively planning what I am going to do when – with the exception of appointments – as this fatigues my brain. Instead, I try to “go with the flow” as much as possible, doing things when I feel I have a chance of completing them rather than sticking to a strict schedule. For a while, earlier in my recovery, I tried to develop myself a schedule and stick to it each day, but it was utterly exhausting for my brain.
At the weekend, my wife is not working and so takes charge of household chores and organising any plans that we might have for the weekend as a family. This means that I am able to reserve my cognitive resources for spending time with my family or occasionally with friends. I still rest frequently and typically take at least 1, if not 2 naps during the day. Roughly every couple of months, we might make a trip to see friends or family for the weekend. If my brain is particularly fatigued, I will stay at home on my own, taking the opportunity to have a complete break. Interacting with people is highly fatiguing for my brain.
Having completed this task and taken the time to recover, on re-reading what I had submitted, I was struck by a number of positive developments:
- I had developed a number of positive strategies for managing my cognitive fatigue
- The rules for fighting the bear had largely become second nature, meaning that I was managing my brain’s resources better on a day to day basis by spreading out my cognitive load across the day and resting in between
- Without trying to, I had come up with a template for my day that allowed me to function more sustainably, having tried and failed previously, exhausting myself cognitively in doing so
- In addition to my improved understanding of my major cognitive weaknesses, I had managed to identify a specific strength – namely when tasks involve being instinctive / spontaneous
As a consequence, when I applied for my driving license again a few weeks later, I elected to include a copy of the above submission. Whilst I could see that certain aspects could be detrimental to my application, on balance I felt that to do so would help my case as it demonstrated awareness of my condition and a willingness to manage it