losing control of our lives after a brain injuryTag Archives

More Is not Better!

by Linda W. Arms

I thought I’d shared this post again since we’re in the beginning of the holiday season. This is the time where there is SO much of everything which is often very taxing for a person with a brain injury.

Post Dated Sept. 15, 2013

After a brain injury, more of many things, is not better. It is not better to see more things around you; it is not better to be given more choices; it is not better to have more things to do; and it is not better if someone tries to explain something to you in multiple ways so you can get what it is they are trying to tell you. After my brain injury I definitely want less of most things. I can do so much these days but I have definitely lost my edge. Some of you have lost even more, so I expect you don’t enjoy more of everything either.

For most aspects of our lives, it is better to simplify and remove the multiples of things we don’t need. This could mean simplifying things around the house by removing the clutter. Remove things that you rarely use from your closets, cabinets, shelves and drawers. Having to look at so many things requires your brain to work harder. Make it easier on yourself by relocating things you rarely use.

Having too many choices is overwhelming. If somebody told me you can do A, or B, or C, or maybe D; it just made my head spin. I couldn’t and didn’t want to think about each possibility and make a decision as to which option I preferred. It felt like torture.

Having many commitments of your time and energy is also too much for many of us with a brain injury. Just knowing that I have many things on my “to-do” list is often overwhelming for me and causes the brain fog to set in. I can only focus on a few things at a time. I have a big to-do list but I pick just a few items to put on a daily/weekly list. I don’t look at the big list on a daily basis. It’s more like once every week or two.

Words – too many words – can be so fatiguing. Sometimes people feel they need to keep talking to us to explain things over and over and in different ways so we understand. For me, I just want simplicity and a slower speed when people speak to me. I sometimes feel I’m drowning in the words that are coming at me, causing fatigue and frustration. I have had various people speaking to me who were much too talkative and they are close to me so they know my problem. They speak way too fast, using too many words making it so uncomfortable for me that I now refer to it as “brain rape”.

Of course, there are things I want more of, like chocolate, but overall I want to enjoy life at a slower pace, with less noise; less clutter; less electrically produced light; less fast, complex talking; less crowds; less movement around me; less choices and so on. I expect that as time goes on, I’ll be able to handle more of things. During the last 7 ½ years, I’ve slowly increased my abilities to handle more. It just keeps getting better.

Source: http://notoriousbig-river.tumblr.com/post/43170184610

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The Brain Fairy – Milestones

Thank you for your support and participation on my Facebook page, The Brain Fairy – Living with Brain Injury and on my website www.thebrainfairy.com As of this month it has been two years that I have been doing this. It has helped me in my journey of recovery. I feel that I cannot say, or that any of us can say, a journey to recovery. To me, that means recovery is a final destination. I think that after a brain injury there is no end point in recovery. It keeps going. We can’t stop working to make progress in improving or maintaining the improved functionality of our brain especially as we also start experiencing the effects of aging.

We also can’t stop raising awareness of brain injury whether it’s due to traumatic brain injury, stroke, aneurysm, anoxia or whatever the cause. I did not understand the impacts of a brain injury before it happened to me even after seeing it happen to people I know. I think there’s been much more awareness in recent years due to the soldiers returning from the Middle East wars and the NFL players suffering from brain injuries. But there’s still a long way to go in educating people about what a brain injury does to you.

About 3 years ago I was talking to my husband about some problems I had that day and I said “I guess the brain fairy just wasn’t helping me that day”. That’s where the name of my website came from. How our brain works and how it repairs itself is still a mystery. Medical professionals can do much to help in recovery but there is still a mystifying process that brings our brain back to a better place after a brain injury. For me, the “brain fairy” has been that elusive thing that has caused the problems and healing associated with my brain injury. I do not understand how it works but slowly things have worked better in this mysterious world of my brain.

When I started the The Brain Fairy I was dabbling to challenge my brain but hoped that someone would visit and get some benefit from the information available on the site and from the posts I wrote in my blog. My goal was first to get maybe 50 views a month on my site but I am happy that so many more people visited than I expected. As of a couple of evenings ago, I have reached 30,000 views for the 2 years in existence.

So thank you all for your interest and support. You have helped me make my brain get better. Two years ago, I needed perfect silence and needed to be well rested to write anything I posted or to do any of the maintenance work on the website. Yesterday evening after a busy day of doing other things, I wrote this, and I was listening to music at the same time. I couldn’t have done that 2 years ago. I have gotten so much better in this time in so many ways.

Keep visiting me and I’ll keep visiting you to share our experiences and important things to know about the brain.

Linda W. Arms (a.k.a. Mina Kitty)

Visit me:

Web site and blog – www.thebrainfairy.com

Facebook – https://www.facebook.com/pages/The-Brain-Fairy-Living-with-Brain-Injury/288317964619749

Email me at: MinaK@thebrainfairy.com

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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.

What does a brain injury feel like_

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Taking Back Control After a Brain Injury

by Linda W. Arms – March 2013

A brain injury often results in us losing control of our lives. Often, because we need the help and oversight, we have to depend on others. We need help with simple, daily living activities such as getting to an appointment because we can’t drive. We need help with simple decision-making. We need help understanding what we are reading or hearing. We need the help of someone else’s brain for so much!

Our loved ones or caretakers start taking over our lives through no fault of their own. We have to lean on them for so much. They make many or all of our decisions, sometimes even for very simple matters. They answer someone’s question for us. They tell us we have to eat or have to rest or stop doing whatever it is we’re doing because they see it’s too much for us or it’s not safe to continue. We want them to do these things for us because it’s too much work or impossible to do by ourselves.

After my brain injury I felt like I instantly turned into an 85-year-old woman and a young child at the same time. I could not move fast and was unsteady. I had little strength. I needed someone to hold my hand to walk across the street, to tell me to stop what I was doing, to take a nap… I wanted someone to comprehend what was being said to me and help me respond.

As I improved, I slowly took over many things people were doing for me. I was not always successful, so I needed their help again. My capabilities were also inconsistent depending on my level of fatigue. My helpers were often standing by, watching and ready to step in. They let me try on my own. It was like being a young child who is learning new things in life. I was VERY grateful for all the help!!! Often I thought, “please, make this decision for me, it’s just too hard for me”.

In recent years, however, as I improved, I needed less and less help. It is sometimes a little difficult taking back that control over your life. Those you counted on became too used to taking over for you when you could not do something. As you improve it is often a bit challenging and even confrontational when you start taking charge of your life again. After all, you’re a big girl (or boy) now and you can do it by yourself.