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Survival Tips for the Holidays with a Brain Injury

by Linda W. Arms

With an injured brain, the holiday season can burden us with more fatigue, more stress and perhaps some sad emotions.  We may remember how our lives used to be before our injuries but we have to move on and appreciate our lives today.   We can look back with fond memories but we can also build new ones that don’t require us to overdo during the holidays.

We will be able to enjoy ourselves much more if we prepare ourselves for the holiday season.   Here are some tips that work for me since my brain injury:

  1. Pace yourself – don’t commit to more than you can successfully handle.  Don’t overdo the shopping, the cleaning, and the cooking or other activities.   Give yourself a quiet day before going to that party or dinner.  Take a nap or just lay down and rest.   Do everything in moderation.
  2. Say “No” – sometimes it’s better to turn down large family get-together because of all the challenges of interacting, a lot of noise and making your way around all the people.   And then, of course, we have to remember that when we overdo it one day we have to pay for it the next.
  3. Get organized in advance – Write things down to help you remember what you need to do.    Why burden your brain by trying to keep it all in your head?
  4. Prioritize – only do what is important.   There are probably things to do that you can put aside until after the holidays.
  5. Ask for help – with the shopping, the cooking, the cleaning or whatever else it is.
  6. Keep things simple – simplify the decorations, the gift giving, the meals and everything else that is part of the holiday season.   Find ways to enjoy the holidays with quieter moments.   The added decorations and lights can add to our fatigue because they are visually stimulating which the brain has to process and sometimes not very well.
  7. Eat properly throughout the day to nourish your brain so it can do a better job for you. Drink recommended amounts of water, our brains need it.
  8. Determine how to get where you have to go before you leave – I like doing this the day before so I can study the Google map and try to think about it for a while before I get on the street.  I even do a “street view” in Google Maps so I can be familiar with the area I’m travelling to.
  9. Determine how much time you need to get there – Give yourself some extra time since stressing causes an additional load on our brain which we want to avoid.   Write down what time you have to leave, what time you need to start getting ready.   I have trouble with time and remembering the numbers.   I write it down so I don’t have to re-think this 10 times before I go.
  10. Determine what you need to take with you and what you are going to wear – Doing this well ahead of time saves that last-minute pressure that makes it difficult to function if you have a brain injury.
  11. Determine, in advance, your way out of the social situation or other activity if things are not going well for you.   You may need to find a ride home.   You may need to leave early before the dinner is over.   You may need to cancel before you even leave the house.   It’s good to let others know that you may have a problem and that you just have to escape before you can’t function well enough to get yourself back home safely.
  12. If you’re going to a new place for dinner, study the menu on the Internet before you go.   I found it very hard to focus on a new menu and figure out what to eat when I just couldn’t keep up with the busy restaurant environment and people at the table talking to me.   It’s easier to decide in advance if possible.
  13. Try to get a table in a quiet, less busy part of the restaurant.   I often get a table away from the hub-bub and I sit facing the wall so I don’t have to see the movement in the restaurant.   I sometimes asked the waiter to turn down the music.

The idea is to save brain energy so you can have a good time.    Enjoy!

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Having a Brain Injury (it never ends…)

by Linda W. Arms, June 22, 2014

What is a brain injury like?   It’s not like a broken leg.   It’s not like most other medical conditions or diseases.   It’s not getting old and experiencing “senior moments”.    It is very different although many people look at it as “oh, you’ll get over it” or “I have that too, it’s what happens when you age.”

A brain injury, whether from trauma, stroke, aneurysm, lack of oxygen or other cause, happens quite suddenly – out of the blue.   You are fine; everything works; your mind is active and full of ideas and dreams and thoughts; you walk about without a problem.   You can speak and comprehend what someone is saying while you cook or do something else.   You read, watch TV, drive, cook, solve problems, make decisions…..   Most likely you don’t think about your brain at all but it is what is making those things all possible. 

After a brain injury, you suddenly are unable to move about or think like you did before. Brain injuries vary in their effect on a person depending on the severity and which parts of the brain were damaged.    In many cases after a significant brain injury, your mind is blank without any thoughts unless you force them to be there.   You have to concentrate on thinking through a simple thing in your head because you lose your focus very easily.   You are in a fog.   When you try to think through a simple thing you feel like your head is full of thick mud or dense cotton that muffles and gets in the way of thinking clearly.   Sometimes it’s impossible to think even about the simplest thing, the blankness just returns.

There is a sense of other worldliness around you.   Your senses are muffled.   Your sense of presence is gone.    You feel you are not really part of what is happening around you.   You can’t experience everything going on around you.   Your view into the world around you is very small like looking through a little tube.   Your awareness is missing.   You often just stare off into space with emptiness in your head and in your eyes.

You have problems understanding what people are saying to you.   You have problems talking and explaining something you want to say.   You can’t find the words, the words don’t come out right, and sentences are hard to form.   You have few emotions, there is no joy, there is no happiness, there is no anger, there is no sentimentality, there is little except maybe some sadness and nothingness.

You have to hide in a safe, quiet place because the world is too chaotic for you.   You can’t go to stores, you can’t hear sounds, you can’t have too much movement around you before you feel so overwhelmed, you can’t see straight or walk right.   You have to move slowly because you don’t have the strength or energy, you have to be careful walking through doorways or passing by things because things aren’t really where you see them to be.   You have odd sensations in your head, you have odd tingling in parts of your body, you may not feel pain the way you used to.

You’re cold all the time, it’s hard to get up out of a chair or out of bed because you are so weak.   You are tired, always tired. You sleep and sleep for sometimes 14 – 16 hours a day.     You get up in the mornings and it takes hours to feel alert enough to function.   You sit there waiting for the disturbing sensations in your head to settle down while your brain is adjusting to being awake.    Sometimes you can’t get there… you have to go back to bed and sleep after getting up just an hour or two earlier.

You have a sense of great loss.   You are not the same.   For so many reasons, the essence of who you are is gone.    You don’t do what you used to do like work or drive or be with friends.   You almost don’t care sometimes because it’s all you can do to think about getting through the day with the chaos that is now part of your world. 

You feel fragile, broken.   You feel damaged.    How do you pick up all the pieces and make progress.

You think “what has happened?”, “did this really happen to me?”,  “is this all my life is going to be like?”  “am I ever going to get better?”, “it’s been 6 months and I’m still not better”, “this is terrible but I have to be grateful it’s not worse and that I’m alive”.

It goes on and on and on for months, for years but gradually you get better.    You make progress but it is very slow.   It takes years.    Sometimes you encounter relapses.   Sometimes you have symptoms you thought were gone but they are back because you are stressed or tired or over-stimulated or sick.

Someone very close to me recently asked me about my brain injury recovery and said, “When did it all end?”    I said, “It didn’t end”.    It never ends.   It’s always there sometimes better, sometimes worse.    There are more days now where I don’t think about it because I do quite well.    I am grateful for the progress I’ve made and most people who didn’t know me before wouldn’t know the difference.    But I know.   I remember how I used to be.   I haven’t gotten it all back but I’m still working on it.   Like so many of you with brain injuries, I realize how strong I have been to have gotten through all this and I am grateful I am doing as well as I am.   I am proud of myself and the hard work I’ve put into my recovery.   I’m sure many of you feel the same way.

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Cooking is a Cognitive Challenge

by Linda W. Arms

Many of us used to think that cooking was a fairly simple task.   I thought so before my brain injury.   Even though I was very busy with a demanding job and other things in my life, I enjoyed cooking.   I was never one to follow recipes.   I preferred getting ideas from meals I ate in restaurants and looking in food magazines.   I liked to create my own things and made many complex dishes for my family and guests.

I don’t really care to cook that much anymore.    It was one the things I immediately stopped doing after my brain injury because I didn’t have the physical or cognitive energy.    My family took care of cooking for me, including the shopping and the cleaning up.   I just couldn’t do it.    I was very weak at the beginning.    My motor skills were off.    Stirring and other rotating hand motions made me nauseous and dizzy.    My vision had a number of problems that weren’t yet fully diagnosed.   The tasks involved in trying to cook a small meal were too overwhelming for my brain to process easily.

I just didn’t cook.   It was just too hard and it made me feel worse.   I tried many times to at least help by doing a few tasks but often that was too much for me.   We just don’t realize how much is happening when we cook something.    You have to decide what ingredients and dishes you need.   You need to wash and cut things up.   You need to figure out the order and timing of things.  You need to use motor and visual skills as you use utensils and do other cooking tasks.  You need to use memory.    You need to process things and sounds that are around you in the kitchen; you need to tune those things out and focus on what you’re doing.   I’m sure that’s just a small part of it.   But you get the idea.   Lots of stuff happening for our injured brain to process.

Over the last years I slowly expanded my cooking activities.   I would do easy things at first.   Someone in my family would help by cutting things up for me.   Someone was also always standing by to save me.   They also were quiet while I cooked.   They knew that any talking; or having the TV or radio on would cause too many problems for me.   I had to have silence and no distractions while I cooked.   S..l..o..w..l..y  over the last seven years, I am doing more cooking and even talk at the same time!   It sounds silly but that’s how it is.   I expect some of you can relate.

I don’t really enjoy cooking that much anymore.   I still have to approach it differently than I did before.   It’s a lot more work.   I usually always burn one part of the meal.   It’s kind of a joke these days.    I’d like to also thank my husband for stepping in and cooking many of our dinners these days.   He’s become a wonderful cook!

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mid section view of a woman cutting vegetables

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Why is Eating So Much Work?

by Linda W. Arms

After a brain injury, everything seems to take so much energy out of you.   One of our most basic needs, nourishing ourselves, can be a lot of work.   Obviously cooking involves a lot of cognitive activities but even eating can be challenging.    After my TBI, it was difficult to sit at a table and eat.   I would often eat part of my meal and be so exhausted that I would have to lie down.

Think about everything that is going on at the table while you’re eating, especially if others are with you.   Another person is moving their hands to pick up the fork, cutting with a knife, moving food to their mouth, reaching for a dish of food…   They are picking up glasses to drink.   They talk.   Maybe a radio or TV is on in the background.   There are plates, glasses, napkins, and other things on the table and all around you.   All of this is being processing by your injured brain.    On top of all this, you have to feed yourself.   All those little actions that have to be handled by your brain.   Can you see why it’s exhausting?

I had visual problems after my brain injury that took a few years to be resolved.   It was very uncomfortable for me to sit at the table and eat. I wasn’t particularly hungry and then adding the stimulation of being at the table was too much for me. Even my own hand movements of eating and cutting the food were too much visual stimulation.   I would sometimes feel nauseous from the hand movements.    For some reason, clear glassware on the table caused a problem for me also.   I think my brain couldn’t quite figure it out, looking through it or whatever but the more there was on the table the more difficult it was for me to look at it.

I also had a sensitivity to sound and light.   Think of the sounds at the table that your brain has to process.   Bright lights around you add to the level of stimulation.   I used custom fitted musician earplugs to muffle the sounds around me but, unfortunately, having them in my ears while eating did not work very well.   The sound of me chewing was very loud which was disturbing.   The chewing sounds would also drown out anything someone was saying to me.     I knew I had to eat but the experience was not comfortable or enjoyable.   I’d eat a bit and then take a rest.     This is a lot for an injured brain to deal with just being at home where your surroundings are familiar, imagine the additional burden when you are out at a restaurant!   Just remember it gets better as your brain heals.   Know your limitations, and try to control your environment to keep things that trigger your symptoms from taking over.

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