Does it ever get better? (and stay better)
 

I'm just wondering...

...My symptoms have been progressively getting worse every few months. I'm trying to just accept that I have a brain injury and the way I feel all the time, so I can move on with my life and find work-arounds, etc.

But, its hard to do that when things are constantly getting worse.

My days are never good. I'm screwed up 24 hours, 7 days a week. Its just a matter of how tolerable they are. How can I explain it...a good day for me is a bad day that I tolerate well. Today, not tolerable at all. I find work-arounds and accept my disability...then I start to move forward with my life, and then I wake up and things are worse than they were the previous day/week...and they stay that way for a long time(weeks/month). This whole month has been terrible.

What I struggle with is all cognitive and psychological problems. I have other issues but they are nothing compared to how horrible my thinking is. I have trouble expressing myself. Words and sentences don't come out right...and sometimes, they don't come out at all. This is a constant problem for me...I have a work-around that Mark taught me. Its called "Stop to think". This works on my tolerable days but doesn't on days like this.

Does it ever get better?

Do the symptoms ever just stabilize?

Or, is this roller coaster something I'm going to be riding for the rest of my life?

I just want my symptoms to stabilize so I can attach some work-arounds to my tool belt and get on with my life.

Okay, sorry for the vent slash ramble. I just felt it was necessary for me to get over the problems I'm having today.

Nick

Nick,

It is obvious you like to express yourself. Between texting, posting, talking, etc., maybe you are trying too hard to constantly express yourself. Maybe you can try just being quiet. Minimize your communication and need to express yourself.

The common expression for this behavior is schizoid. It is a common symptom of many with PCS. We withdraw from being expressive and become quiet and some would say, loners. I believe this is due to a self protection. We realize our struggles to be expressive and choose to be quiet.

I used to be very talkative. Not so much anymore. I carefully choose when to be talkative. I also am slow to speak so I can get my thought and words together. The word finding problems can become almost overwhelming.

I find it interesting that the younger generations have so much to say. Is there really so much to say, or is it just talk for the sake of a habit of talking? The availability of instant communication may be causing a stress level that is not healthy., especially for those with PCS.


But then, I am brain damaged so I may be wrong.

I have no trouble expressing myself through texting/posting. That's why it would be hard to believe I struggle with anything at all :)...

So what am I supposed to do?

I can't watch TV.

I can't listen to music (one song and I'm done).

I can't talk to people.

I can't go for walks longer than ten minutes.

If I run errands, the next few days my symptoms are not tolerable.

I can't draw.

I can't sit at the house and do nothing because it drives me crazy (anxiety).

The list goes on...I'll stop there. I'm not a big fan of the word "can't". When I say can't, I mean I really just CAN'T do it. My cognitive functioning is always borderline tolerable. Meaning, if I do any of the above things....it pushes me over the limit and that could be bad. Very bad. If I go over my limit (which is small and constantly changing), my brain can shut down. When i mean shut down, I can become disoriented, not be able to think or speak at all and/or confused..I hear about things like this happening to people after a busy day, then they have a bad day and recover in a day or two. It's way different for me. The slightest bit of overstimulation can shut me down for a week or two. Not kidding. One good week that I had last month shut me down this entire month.

If I watch TV, even on a tiny non-hd TV, for more than 5 minutes....It could shut my brain down for the entire day or week.

No over-exaggeration here.

So what CAN I do? Pretty much nothing.

Pure.....torture.

I would love to find something that I can do that doesn't cause me problems.

I'm just so sensitive to any kind of stimulation.

Anything that requires me to think shuts me down.

Oh, you never answered my original question(s).

LOL ;)

Learn how to knit and crochet. It will keep you hands busy without over-stressing your brain.

It is known to be a non-stress activity.

What kind of drawing did you try that overdid your brain?

What kind music does you in with just one song?

If you can text and post, your brain is putting the thoughts together.

Finding the words may just take time. You may never recover word finding to your pre-morbid level. That should not stop you from living life.

I know many people who live with permanent word finding disabilities.

I honestly do not believe that you are getting worse. I think you are just getting frustrated and tired of the ups and downs and want to be free of your limits. You always have a 'nothing is getting better' which makes it appear that things are getting worse.

What tasks do you have that you can slowly check off steps? An SSDI application? Getting your car running? Finding a place to live?

Set up a daily agenda. Write it down. Then, each day, follow the list and check off the things you have done. At the end of each day, take notice of the number of little things you accomplished.

Counting the little things accomplished is the start of moving forward.

Note the ways you did things differently. For the tasks you did not accomplish, write down a new way to try to accomplish that task.

Do this for a few weeks. It will lead to improvements in both your attitude and abilities.

If there is a task you have not been able to do, post the task and see of we can help you find a way to do it.

Hi Nick,

Sounds and looks like you have no problem with typing/texting/posting. Have you ever thought about having a blog, where you should post? It will give you something to do plus you can even earn some money if you put google ads in your blog. I know one guy, who makes about 2000$ a month just doing that. Of course, he has about 5 blogs covering different issues and he started with 5-10$ a month, but still... Think about it.

I'm going to reply to both of your responses in two separate posts. I can't get my phone to multi-quote them for some reason.

I've never tried to knit or crochet. It looks like it would be fun. My concern is the thinking that is involved in learning a new skill/activity. When people try to show me how to do something...my brain gets put into a confused state. I think my grandma knows how to knit or crochet...maybe I'll ask her.

I can't even write words on a blank piece of paper without getting messed up. When I go to a new doctor, I write my symptoms down on a piece of drawing paper. This does me in pretty good. Not as bad as filling out a form.

But, to answer your question, I've never been good at drawing...so I draw pretty basic things. Sometimes just stick figures. I tried to color in a children's coloring book the other day and got overstimulated fast.[/quote]

Anything except very, very soft, music. I can listen to like nature sounds and very soft melodies. Anything else is too much for me.

Everyone knows that writing is the easiest way to express one's self. It is much different than speaking...you can take your time with what you write. Its taken me months and months of this to be able to text, email and post FROM MY PHONE without getting overloaded. Now that I think about it, that's probably one of my only accomplishments/improvements.

BTW, even though I type very fast...it takes me anywhere from 45-60 min to write something out like this. It takes me awhile to come up with the words to write down. I'm also a perfectionist...I do my best to make sure there are no errors. Always been that way.

I understand this. I don't mind if I ever go back to my pre-morbid self. I just want things to become STABLE...so I can get used to the way things are. I'm not lying
when I say my cognitive symptoms are flip-flopped. They never stay the same...even if I chill for 3 days and do nothing but mild writing on here or emails (that doesn't effect me at all). I can wake up one day hardly able to speak at all...when this happens, I say okay, I'm having a bad day so I need to rest. I rest all day and wake up the next with even MORE problems. So, it gets bad, worse and then worse again before I have one "okay" day. Then the cycle starts over. Its so ridiculous.

My threshold is NEVER the same. How can you move on with you life when the amount you can handle changes on a daily basis? One day I could walk a half mile with my girlfriend and kids. Two days later, I'll try to walk around my apartment complex and get overstimulated as soon as I walk out the door. That's why I asked DOES IT EVER BECOME STABLE? If it will, I can work-around my flaws. No problem.

My heart goes out to those people. I know how they feel.

Its hard to believe that I'm not getting worse. My symptoms didn't show up at all for 3 months...that's confusing but understandable. After they showed up, I was able to watch TV, play video games and communicate very well still. My life was great. In November...my ability to watch TV and play video games diminished. This was a big change. It went from being NO problem at all to screwing me up within seconds of watching or playing. Its hard to believe that I'm not getting worse with a drastic change like that. That has not gotten better since it happened.

I've never heard of someone playing a video game all day causing permanent damage. That just doesn't add up.

The beginning of this month...I woke up and my communication skills were diminished. They were bad as it is...but now they are horrible. The return of confusion and easy overstimulation. My ability to drive is gone...if I try to drive just up the street my brain shuts down. I almost crashed my mom's car. I used to be able to drive for 20 minutes without a problem. When I say used to, I mean last month.

I'm not getting hit in the head. I doubt the small things such as simply texting and posting on here is making me permanently worse. I'm not playing video games or watching TV. My days are pretty much like this...I stay home and hang with the kids...We might go for a walk around the complex or around the block. I occasionally make something to eat. I have small talk with my girlfriend. If we have an errand to run, like a doctor's appointment or a trip to Welfare, we take the bus there. It just don't make sense how these simple tasks can be making me worse.

I don't have enough work credits for SSDI, but, I qualify for SSI and I'm awaiting approval from them (they take forever). My UE has run out...completely...so working on my car is out of the question until I get approved for SSI. We have a plan (me and Tara) to move out of my mom's. Our steps to accomplish that are her finding a job and me getting approved for SSI. Everything is pretty much on hold until then.[/quote]

So, this could be the answer to your previous question about tasks that I can check off. I can do that...there just isn't much to do around here. Besides shower, make breakfast, lunch, dinner, clean the room, living room, etc. I can make a list of those things. My girlfriend usually does all that (except shower for me lol)...because she let's me hang in the room and rest in complete silence. She takes care of me.

Okay, I'll try that. Thanks a lot.

Wow this reponse did a number on me. It took me over an hour to finish this. I'm going to take a break before I respond to the other one.

I can understand how difficult it is cognitively to reply with quotes on a phone. Do you have a laptop or desk top you can use?

The cognitive effort between my tablet, laptop and desk top is drastic. Does your phone have a mini- qwerty key board? Or qwerty touch screen? or number/letter pad?

Just because you think you are successful at using your phone to text does not mean it does not stress/strain your brain.

The fact that it only displays a small amount of text means you need to use more memory skills to remember what has been typed but is off screen.

I can text on my phone with the number pad but it overwhelms me with the memory demands.

One issue I think you should look into is whether you are getting good oxygen when you sleep.

Where do you sleep ?
Where do you take a nap?
What positions do you sleep in?
Do you snore?
Do you notice any correlation between stressful or bad dreams and having a bad day?
Are there times when you wake up and feel alert?
Are there other times when you wake up wondering when, where, and who you are?

How long have you been out of the workforce versus in the workforce since you turned 21 years old? Did you work under the table so work does not show up with SSA?

Hi! I saw something here about being a perfectionist. That may be a large part of the problem. I too struggle with that and I find it difficult to find hobbies as I want to create something "good". I can't seem to let go and just do it for the fun of it.

I read a few times on the Internet and in BI books that "high achievers" seem to struggle with their TBI deficits more than most. I think it's because we were used to doing many things and doing them well. And lookout if we really pushed to achieve something! :wink:

It's just so darn difficult to let go and accept so much less of ourselves. Sigh. But the more frustrated we become, the more we stress our brains. I think I recall something Mark wrote about glass half full, but now we need to just use a smaller glass.

Remember when reading, puzzles, watching tv were relaxing? Well that's not
the case now. Now relaxing is doing nothing. And yep it's frustrating. Double sigh. Everything we do now takes cognitive effort and before we know it, we gone and overdone it again.

I apologize if Im repeating stuff that's already been said here. Im having difficulty reading all the details and I know there was some stuff I didn't absorb. Oh well, I let it go. :o

Good luck and hang in there!

Xsoccergal

I just want to say this as well. I pushed myself trying to work 4 hours a day for 3 days the first week of Jan. And I thought I was doing well. The crash (setback, flare up) hit harder than ever with my symptoms the worse they had ever been! It almost seemed like I had another concussion or another brain ailment. My husband was very worried and my emotions spiraled way down.

This crash lasted at least 6 weeks. And now, my speech is doing really well. And I am still improving. Even though I still have struggles, I am becoming more aware of just how little it can take to go overboard. Its only taken 2.5 years to learn this :confused:

Our grandsons were over yesterday for a short visit and they are so good and they were fairly quiet. I was communicating well, but today it's a no-go. I've done extremely little today. Most of it spent just resting in the quiet and dozing every now and then. I could do more but Im starting to read myself better and STOP! Im fairly certain tomorrow will be better.

Take it easy and be good to yourself! :)

Xsoccergal