ADVICE FOR THOSE WITH BRAIN INJURY
This information has been devised to help you along your brain recovery journey.
You may be reading this because you are affected by brain injury.
A brain injury that you were not born with is called an Acquired Brain Injury or ABI for short.
The average time spent recovering from a brain injury is 2 to 3 years. For some it may be quicker and likewise, for some it will be much longer, Brain recovery is experienced differently by everybody.
After your brain injury, you may feel differently to how you used to feel.
You may have noticed some changes in your thinking, personality, behaviour, emotions or physical ability. This is perfectly normal after brain injury, although frustrating and sometimes frightening.
Brain recovery is a long and challenging journey filled with many ups and downs, but we are here to support and guide you every step of the way.
You Are Not Alone
You may feel as though people do not understand what you are going through because they cannot ‘see’ a damaged brain. To help yourself, talk to family, friends and the P.A.U.L For Brain team. You will need as much support as you can get!
Communication Is Key
Problems you may have:
It is common to suffer with;
- Less capacity for thoughts
- Extreme tiredness (also called neuro fatigue or ‘brain fog’)
- Basic understanding and meaning of life
- Memory loss
- Emotional issues
- Poor attention and concentration
- Loss of interest in hobbies and things you used to enjoy
- Vacant/slow processing
- Loss of motivation
- Inability to see a future
- Loss of, or increase in sex drive
- Negative thought pattern
We understand that because these struggles are invisible, it can be difficult for other people to fully appreciate the impact they have on your daily functioning.
Again; communication is key, try your best to explain how you are feeling if you can. Even if it is not what you would ‘normally’ do, it will help you in the long run.
Never be afraid to take ‘time out’, and allow your brain to take a break if things get too much. In fact we encourage you to do this. Brain breaks can help your wellbeing & performance.
You may also have physical problems such as:
- Difficulties with movement
- Altered sensation in the body, limbs or both
- Problems with balance and co-ordination
- Difficulty speaking and swallowing
- Loss of taste, smell, or both
- Loss of sight or peripheral vision
Physical problems are easier for people to understand as they are clear to see.
Common effects of brain injury;
While your brain is under repair, there are many things you can do to help yourself.
At P.A.U.L For Brain Recovery, we encourage you to take control of your own healing, by helping you understand your brain injury, how it affects you, and give you advice on what you can do to reach your full potential. You may be experiencing some, or all of the following;
1. Neuro-fatigue is extreme tiredness and can be one of the most incapacitating effects of brain injury. This may affect you both physically and mentally.
During your recovery, you may tire easily after any kind of activity, particularly those which require concentration or physical effort. Simple tasks like cleaning, watching tv or talking to family and friends, may result in extreme tiredness. This is a normal part of brain recovery, and does get better over time.
You may try to push yourself too hard during recovery, in the hope that you will overcome your fatigue, but be aware that doing this may have the opposite effect, resulting in extreme tiredness for days afterwards.
Rest when you feel tired, and take regular breaks throughout the day in a quiet room and do nothing. This allows your brain time to process information and ‘file’ it away, so you’re ready to move on to doing something else.
Take a break between daily activities
2. Sensory overload –Happens when there is too much information for your brain to process at that time. You may feel confused, tired and want to leave the situation
It could be anything you see or hear and often happens in busy places, or when there is a lot of visual stimulation or noise (especially lots of people talking), but it can happen during a conversation at home with a family member.
If you feel that the situation you are in gets ‘too much’, then tell someone if you can, or just excuse yourself and leave. It is important to rest and take time out and allow your brain to recover after sensory overload.
3. Depression – is more than feeling sad or low every now and then.
After brain injury, it is normal to feel low and sad at times. You may also want to be back to how you were before the accident and at times, dwell on how your life has changed.
Most people will feel periods of despair following a brain injury – this is normal however when it begins to seriously interfere with your progress and daily functioning, you should visit your doctor for advice.
It is important to talk about your feelings to someone who you trust. Keeping thoughts, feelings and emotions bottled up, is no good for your recovery and may lead to depression.
Signs you may have depression
- feel an overwhelming sadness all the time
- lack energy or feel tired
- have difficulty enjoying routine events almost daily
- difficulty sleeping
- negative thoughts for most of the day
- loss of appetite
- feelings of worthlessness
- thoughts of suicide
Even remembering familiar people’s names may seem a struggle. You may also forget where you have put things, your daily routine and conversations.It also may be a struggle remembering your way around a place or how to get to somewhere that would not have a problem before your injury.
Don’t put pressure on yourself, problems with memory are a very common effect of brain damage. We can help you implement strategies to cope.
Here are a few suggestions;
- Write appointments or commitments down in a paper diary or calendar
- Put important events in your mobile phone calendar and set an alarm reminder
- Use the notepad on your phone to make shopping lists or record things you needto remember
- Use post it notes to stick reminders on cupboards/doors/walls
These suggestions will help take the pressure off your brain while it is under repair. If you are unable to do this yourself, ask a family member or friend to help you.
5. Loss of, or increased sex drive – Brain trauma more often causes a decrease in libido. However, sometimes the opposite does happen and you may want to have sex more often or at inappropriate times.
Loss of interest is sex could be because of factors such as, but not limited to;
- Tiredness and fatigue
- Decreased mobility
- Low confidence
- Feeling unattractive
- Difficulties in communicating
- Loss/decrease of sensitivity
It is also very common for men with brain injury to be unable to obtain or maintain an erection, leading to feelings of frustration or inadequacy.
Impotency can be caused by brain damage but can also be a result of psychological factors. Both men and women may find it difficult to achieve orgasm.
Even though it may be an uncomfortable conversation, talk about your expectations, fears and feelings. A couple can solve most relationship problems if they communicate frankly with each other.
Finally, take it easy, and try not to put too much pressure on yourself, it is likely you will feel different in time.
You may feel like you could cry at the drop of a hat, which can be difficult, especially for those who do not like to show emotion in front of others.
OR you may feel like a bit of a robot, and lack any emotional feeling at all, which can be really tough for your family and loved ones, more than a problem for yourself.
This is normal consequence of a life changing brain injury, and one that persist through brain recovery and beyond. We can help you with coping strategies to manage your emotions and talk to loved ones who are affected.
7. Personality Changes
During your recovery people may say you have changed, either in your behaviour or personality.
Whilst you may not be aware of the difference in yourself, and it may seem frustrating to be told by others that you have changed, it is a very common consequence of brain injury.
What you can do to help yourself
- Keep hydrated – drink plenty of water
- Eat a healthy diet, limiting sugar and processed food
- DO NOT drink alcohol, it slows down brain recovery and increases the risk of having epileptic seizures
- Take regular breaks away from all forms of stimulation
- Take daily exercise if possible
- Take time out in nature and fresh air
- Practice mindfulness or meditation
- Be kind to yourself – negativity inhibits your progress
- Celebrate your achievements, no matter how small
- Be patient – brain recovery is a process, there is no quick fix
- Communication is key – don’t expect everyone to know what you’re going through. Tell the people that matter or who you trust and don’t worry about the rest.
You are not alone – The P.A.U.L For Brain Recovery team are here to offer education, support and guidance if you need it.