Everyone keeps telling me I have to stay strong and continue in my therapy, it sounds easy but I really feel like giving up because I’m not seeing any progress and its been 1year already
Esther06...It is hard for us to see our improvements during that first year. It takes so much time for your brain to heal. Keep fighting! It has been 6 years since my brain rupture and I feel like I am still working on improving! Stay Strong & Positive!
Esther06...I thought this may be helpful for you:
Don't know who wrote this, but thought it would be a good day to re-post:
What Brain Injury Survivors Want You to Know
I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.
My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.
Brain Injury Rehab takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.
I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.
If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!
If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.
Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.
Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.
Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.
Please have patience with my memory. Know that not remembering does not mean that I don’t care.
Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.
If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.
If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)
You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.
If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)
If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.
We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.
Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.
Esther06, I’m rapidly closing in on 10 months since my brain bled, just like you. I’m fighting the same battle you are. Whenever I feel like I’m not making progress in PT or OT, I ask to review some results with the therapists. I see what I’ve done, and realize it’s more than I initially thought.
It’s never as fast as we’d like, especially when we’re living it every day. I’ve slowly come to accept its truly a game of inches. Do I like it? No, and I’m sure you don’t either. But looking at it from a different perspective, our brains bled and we survived! We must have a special purpose in life, even if we don’t yet know what it is. I bet you are doing better than you think. Hang in there Esther06, you can do it!
Thank you for writing this. This makes me understand as being a caretaker. I am worried for the same thing, my brother giving up. He has gotten better to worse to getting better again recently since they just put him back on steroids. I worry if he goes off the steroids his neurological condition will worsen again.
Louisa the post about "What brain injury survivors want you to know " has to be the best explaination I have ever read on how we feel.
I will be printing that off and framing it to go on my wall at home as it sums everything up perfectly.
I have even reposted it onto my facebook page for all my friends and family to read as I think it would help them to understand what we survivors go through every day and why we are the way we are.
thank you so much for posting that x x
Hi darrenfrowley...I don't know where What Brain Injury Survivors Want You to Know...came from, who wrote it...but it was posted on this network a long time ago and I try to re-post it every six months...as it is so useful for our! It really means so much to me...I re-read it all the time.
Hi Louisa,
I have already re-read it a few times now since I have printed it off, I think it would be a good idea for all us survivors to print copys of it off and give them to all our friends and family so they can read it as well and help them to understand what we all try to cope with on a daily basis.
its just such a fantastic description and worded perfectly , my mum has already asked me for a copy of it for her to frame and put on her wall.
I dont know who wrote it but whoever did has summed everything up in a remarkable way and for that we have to thank who ever it was that wrote it.
and again louisa thank you for posting it here.
Darren xx
Hi Tim, thanks! Lets persevere on together! Xx
Thanks Louisa it speaks my heart . I’m so glad you shared this xx
What Louisa posted is very similar to this link…http://www.waiting.com/letter.html Bottom line…you are no longer alone. You would not be human if there were not times that you feel defeated. They key is just to press on…PERSISTENCE!
Contrary to what doctors say…many members see improvements years later!
Sending positive energy your way!
Barbara....I'm so glad you posted "Letter From Your Brain". That and What Brain Injury Survivors Need to Know made me believe I was no longer alone! Thank You, Thank You, Thank You!
Wow ! This is a great re-post and reminds us all to be strong and fight everyday. Some days and even weeks are better than others. But, a positive mindset will help even the hardest of challenges.
Hi esther,
I know its discouraging when we feel progresses are slow. However, I had given up on ever writing again, and just recently, 14 months post op, I have been able to write !! We just never know when the brain is going to decide to improve on something we thought was lost!
I know exactly what you went through with no being able to write, dandelionwishes! The best for me was to keep trying and working with my Speech Therapist really helped.
Isn't it crazy that you would win spelling bees at school and when you have your bleed, you have to work so hard to spell things correctly. But things do get better and the best is "Spell Check"!
Hi thanks so much I’ll keep going on thanks xx
Reading This Has helped Me a Lot Thank You So much.I Am Going To Also Print A Copy For My Friends and Family. Some People Don't Understand Because We may look Ok It Doesn't Mean We Are Feeling Ok. We Need Time And Understanding.
Thinking Of You all x
Hi Crystal..
The best thing about our Network is that we do understand. When I first read this post, I gave a copy of it to my family members...I believe it educated them quite a bit. Stay Strong & Positive!
Thanks xx its just really sad and disappointing that I can’t do as much as things as normal as before. Sometimes it’s really a burden and affects my self confidence 