Londoners’ experiences of life-changing injuries

Challenges and strategies after injury or acquired disability

Life after injury often involves a continuous process of facing new challenges. Depending on the type of injury, these may include memory loss, concentration problems, difficulty processing information, physical problems, and problems with sight and hearing. People we interviewed adopted a range of strategies to help them manage these challenges, and Simon A said this was “the key to life after injury”. While people hoped these strategies might be useful for others too, it was recognised that everyone is different and needs to find what works for them.  Finding the best strategy involved a lot of trial and error, according to Adrian. In spite of having strategies in place, people still had difficulties. Jane said, “Bad days dash my confidence”.
 
Hospital rehabilitation staff were a common source of advice on strategies to manage physical challenges, and problems with memory and concentration. Initially, coming to terms with the lasting effects of injuries could be difficult. Christopher remembers feeling upset when the occupational therapist first suggested developing strategies. “This was just like the pits. Because anybody who needs a strategy explained to them to live, there’s something seriously wrong with them.” Jack used humour as a way to help him and his family come to terms with his limb loss, while Sam found creative activities helped.
Accepting that life has changed was an important factor for some in recovery and facing up to challenges. A man (Interview 23) with a brain injury said he almost wished his rehabilitation professionals would tell him he was not going to recover any further because he felt frustrated by trying to improve and live with his impairments. Having a realistic understanding of their limitations could be valuable but difficult to establish, because sometimes people had problems with understanding, especially after injury. Accepting they were not the same as before, letting go of their old self and not dwelling on the past were seen as helpful. People felt it was important to try to remain positive and not to let the new challenges they faced define their lives and who they were. Interview 23 felt it was important to find things to do and “start getting their life back into order” rather than sitting at home. At the same time, Nick Y cautioned against overdoing things.
Returning to employment was not an option for everyone, but those who were able to go back to work discussed ways of making it manageable. This included going to the office at times which suit you, flexible or part-time hours, or working from home.
 
Planning and organisation became particularly important after injury, and people were often encouraged by rehabilitation professionals to set themselves goals and to think about and plan the tasks they needed to undertake. One man (Interview 23) who had a brain injury said, “Start doing goals and little tasks and it just helps you get your life back into order”. Careful planning and organisation were often important to people after injury because many were unable to do things spontaneously anymore. Simon B said his body no longer “worked on autopilot” after his spinal injury so he needed to plan in advance.
 
Extreme tiredness (or fatigue) is a common problem after injury. It is often a direct effect of the injury, but is also associated with the effort of dealing with daily challenges. People dealt with this by taking naps during the day, for example, and scheduling activities for when they would be well rested. But Adrian said he found keeping his mind active was also a good way not to get tired. Some also believed that other changes, such as cutting out sugar and caffeine improved their energy.

Although brain injury was frequently described as a “hidden injury” (Barrie), people also sometimes experienced lasting physical problems, especially with fine motor skills.
It was common for people to experience problems with memory, planning, concentration and sensory overload after brain injury. Sensory overload is when people’s senses get overwhelmed by what’s going on around them, such as loud sounds, movements or lights. Ed was surprised to find a relatively simple solution to it that worked for him.
Sometimes people found decision-making difficult and needed time to think things through. Multitasking and solving problems were challenging, so people described approaching problems as if they were mini-projects and broke them down into smaller parts to deal with.
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People described struggling to retrieve information from their memories. Amy said it was as if someone had muddled up a filing cabinet or divided their brain into compartments. Some felt doing puzzles and brain training exercises helped to improve their memories, but Christopher disagreed and said these were not helpful for him. Using transparent coloured overlays when reading helped some people process words, and earplugs allowed them to cope with noise.
Meeting new people could also be stressful and people worried they would forget names. They used techniques like associating the person’s name with another word or famous person, and asked them for their card or to write their name down. Amy said you shouldn’t be afraid to ask people for reminders.
People needed to be able to remember things they had already done as well as things they planned to do in the future. Having something they could use to help them recall things that had happened was reassuring for people with memory loss, so they often wrote things down on white boards or in notebooks or diaries. In addition to appointments, they also logged the formal and informal happenings, conversations and meetings they had throughout the day. Having a factual account allowed them to refresh their memories before they met again and they could rely on it if there were any queries about who said what. But writing things down wasn’t always a good solution for everyone.
 
Mobile/smart phones (e.g. iPhones) and tablet computers were often used as memory aids. This kind of technology has made a significant difference to people’s lives, but Christopher pointed out that for people with memory problems, it is important to develop a system for remembering the passwords you may need for different digital devices.
 
People used phones to make notes, which they could email to themselves, set alarms to remind them to do things, take photos of people and places, and put appointments in their diaries. GPS (an electronic navigation system) on phones was used to help people navigate through areas if they forgot where they were, and people also took photographs to remind them where they parked their cars.  
Instead of using technological devices, some people noted landmarks, such as shops, and practiced routes, trying to commit them to memory. Those who had problems with visual perception (e.g. failing to ‘see’ things) and spatial awareness (e.g. estimating distance) had to take extra care to negotiate traffic.
Smart phones, GPS and landmarks were also important to blind people in learning routes. Additionally, people with visual impairments described a range of aids they can use to make help them live independently. Audible software makes using the computer and reading documents easier and bump-ons (raised, tactile stickers) can be stuck onto gadgets (e.g. microwaves) to indicate settings.
One aspect of life after injury can be anxiety, mood swings, and sometimes anger and aggression; this may be because of damage to the brain but also the frustration of not being able to do things so well. Techniques like mindfulness, meditation and cognitive behavioural therapy could help, and some felt exercise also helped with these problems and had the added bonus of promoting fitness, weight loss and increasing feelings of self-confidence.

(See also ‘Mobility aids for physical disability’) 

Last reviewed October 2015.

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