![]() |
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. Quote:
|
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.
Quote:
Quote:
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] Quote:
Quote:
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. Quote:
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. Quote:
Quote:
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. Quote:
Quote:
Quote:
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 |
Quote:
My laptop and PC are both broken...and I don't feel like messing with them. I'm sort of a computer whiz...I still know a lot about them and know how to fix them, I just procrastinate a lot and I have a fear of over-working myself. I sleep on an air mattress in our (me and my girlfriend) bedroom. Tara (my girlfriend for those that don't know me) just said I wake up every night like clock-work before midnight and go to the kitchen for a snack...hahaha, I didn't realize it was an every night thing. Usually a bowl of cereal or a fruit. That is TOO funny...lol. I usually go to sleep between 9-10pm. When I take a nap, my girlfriend takes the kids in the living room and I nap in the bedroom by myself. I sleep mainly on my sides. Never on my back. She says I don't snore at all. Hmm, not sure about the bad dreams / bad day thing. Nowadays, when I wake up, I know who I am and where I am but my brain is very slow to boot up. My speech and thinking is horrendous. Once I'm up for an our or two and start to stimulate my brain...My brain will wake up...and I'll have some almost normal moments. When the day starts winding down and its close to bed time...I crash and everything comes back again. Since I turned 21, I've had 3 payroll jobs. One of them was only for a month or two. Another one was for 10 months and the last one was for 11 months. So in total, I've worked about 2 years. I've done lots of odd-jobs off Craigslist, too, but I'm not sure if that counts. Thank you, Mark :)... ***************************** Soccergal, Wow, a crash/setback/flare up that lasted 6 weeks? That is horrible...but it made me feel better and less alone in my situation. I'm sorry that you suffered for that long. Just hearing that someone else has experienced something similar to me made me feel a lot better...I don't feel so abnormal anymore lol. Thank you for telling me about your experience and also your kind words. I'm gonna relax for a bit. I just got back from a long walk and I'm beat mentally and physically exhausted. Nick |
I suggested something to you a while back Nick and gave you contact numbers to try it. Im sure its in your inbox. It was about Healing Touch. Its a relaxation technique that works on problems in your physical body, mental, emotional, and spiritual levels. Its proven with research to help with anxiety, pain, depression, and promotes relaxation. After your treatment, the Practicioner can give you "homework" on how to do treatments on yourself to help your healing that you will have control over and can actively participate in to help get better.
I had the same feeling of "im getting worse" with the frustration of having setbacks, the anxiety it brings on, and the denial and anger you have with dealing with your brain injury. Once i finally listened to all the advice.....and was told to stop "sabotaging" my recovery (by doing things that i knew bothered my symptoms or made them worse) and accepted my injury.....i started to get better. I changed my attitude about my TBI and woke up with a positive attitude and started doing the healing touch treatments and i started to get better! My word finding difficulties got better pretty quickly and now 11 months later, i never notice word finding difficulties. I havent had brain fog in 3 months or more (and i used to have it EVERY DAY for 6 months). I also had awful awful anxiety and depression and that is completely gone....i dont even need antidepressant medicine and went off of it in december. I have met quite a few other people in healing touch classes who also had concussions and they express the exact same thing about how it was the defining difference in their treatments that helped them to get better. I'm going to start my community project (because i will be a Healing touch Apprentice in April after i take Level 4) and thinking of doing it with the San Diego TBI foundation so i can volunteer my time doing treatments on people with brain injuries so they can heal with the help of healing touch since we all have had such great recoveries from it. But back to you, I think you put way too much expectation on the NUCCA adjustments to make a permanent, miraculous, instant recovery and when that didnt happen you seemed to have given up on yourself and declare yourself incapable of getting better. If you go back and look at your posts, there is probably a 100 posts asking if what you are experiencing is normal. And the answer to probably every post is yes, this is normal for PCS. you just have to accept that its going to take some time. Every time you expend energy to write back to everyones comments on here, its probably mentally fatiguing you and exhausting you (both physically and mentally). Do you know how many synapses it takes to string together sentences, plan what you are going to write, have a thought become a finger movement on a keyboard to create a word, along with analyzing what is being said to you. Its A LOT! So like Mark said, take it easy. You are starting to freak yourself out and need to take some deep breaths and truly relax. The anxiety is making it all so much worse. You said you like calming music, Some great FREE music i just downloaded yesterday to use in my treatments is on Amazon, " Native American Flute Lullabies", Its like an hour worth of free relaxing music! There are also TONS of books on how powerful your thoughts are. If you are constantly writing negative things, saying you are never gonna get better, and saying you are only getting worse....you may create that reality for yourself. Negativity breeds negativity. So try to find some positive thoughts and when you find yourself getting negative, stop yourself and think of a positive. You can do it!!! I've had patients with way worse problems and diseases and their positivity changed the entire course of their illness and recovery....so it definetly works. It worked for me. Take a deep breath, smile, and state affirmingly, "My healing is already in progress" . Start from there. you got this! |
Nick,
Try starting your day with a glass of juice. You may have low blood sugar and need a boost first thing. How do you afford two cell phones with data plans? A task for you to consider is a plan for frugal living. List all of your monthly expenses and categorize them by necessary, optional but valuable, and luxury. You will be surprised at how much spending you can cut out. There are ways to bring in some income. If you have done it off CraigsList before, you can do it again. Dog walking, pet sitting, spring yard clean-up. Has Tara ever applied to work in fast food? It pays and the jobs are out there. If she has to walk or ride the bus, those are the breaks of life. There is a saying, "People in worse circumstances have done much more with much less." |
Victims of Crime will not pay for Healing Touch. About a week after you send that PM I called to get an authorization and it was denied. I have no income to pay for it. I know it doesn't cost much, but I have absolutely nothing :(...I get little spurts of a positive attitude here and there. I'll admit, it gets me through some tough times. But, here's the thing. I've got a really messed up brain injury. My brain bled and was bruised and there is permanent damage in a very important part of my brain. I have dried up blood on my brain in the area that was damaged and I'm certain its applying pressure, which is making things worse. That will be there...forever. I was also hooked on a very bad drug for 5 years. My brain was already screwed up from chronic drug use. Its a good thing I quit doing that 4-5 years before the injury or I'd be in worse condition. I have so much scary stuff happen to me...I can't even begin to explain the things I experience. I have stuff happen to me that I haven't read anywhere on any website about TBI and both support groups I'm a part of. Believe me, I've searched this entire forum, near and far, high and low for answers LOL. What I'm trying to say is...its hard to stay positive with all that is going on with me.
After today...I'm probably going to take a break from this forum. It just drives me crazy. Its great because I can come here and vent, which makes me feel so much better. But, I also feel like my injury is so much more severe than others. Nobody can really relate to what I experience. I spend way too much time refreshing the page from my phone, waiting for people to reply to my posts or PM me. I'm constantly checking and hoping to find someone that experiences the things that I do (not that I would ever want someone to experience such things...I wouldn't wish this on my sworn enemy...not even the person that did this to me)...but it just doesn't happen. I get discouraged and it sets off a whole chain of anxiety that takes me forever to break free of. Thank you all for putting up with my constant whining and providing me with support. Its got me through a lot of rough moments in my recovery. I don't know what I would have done if I never discovered this place. I probably would have ended up in a mental hospital. Not kidding. **************** Mark, I only have one phone with a data plan...and that is paid for by my mother. The other phone is just an extra Android phone that I have laying around. It connects to the internet through Wi-Fi and doesn't have a data plan (no calls or text). We have absolutely no expenses, besides the things we need for our kids. We are turning off the cable and internet at the end of this month. We are moving to a new apartment and the rent is a couple hundred more than where we are staying now. So, we had to make some cuts. My cell phone is getting turned off, too, because she can't afford to pay it anymore. Tara has applied for just about every fast food restaurant in town. This city is just not hiring unless you have years of experience. I've been applying for jobs non-stop for the past 3 months. Even though I can't work right now...it was required by Unemployment. In the 3 months I've been applying for work, I got one call back. I have a professional resume, too, that I've been sending to companies. Its rough out there right now. About taking the bus...we have no problem taking the bus at all. We have no money...so we can't even get on the bus lol. We're trying to get a ride down to Welfare this week to ask them for bus passes. Then we'll be back in business. Mark, you've provided a lot of excellent advice to me and everyone here on this forum. From the bottom of my heart, thank you. Right now I'm a handful to deal with...with all the problems I have. You've tackled just about every subject I've thrown at you. For someone with a brain injury, you are a pretty stand-up guy. I'm gonna take a little break from this group...maybe a few days, maybe a month or two. Feel free to respond...I'll read it tonight but after tonight I'm out for a bit. I just need to get myself together. Nick |
Nick,
You think you are experiencing symptoms that are worse than everyone else. I don't think that is true. The big difference between your situation and pothers, especially mine, is the coping skills. I have dealt with every symptom you have. I have just learned better skills at working through them or accepting them and letting go. It take hard work to say to yourself, I can not change this symptoms, but I can accept it for the time being and work at finding a way around those symptoms or living with that symptoms. I have not had a normal nights sleep in over 10 years. Fortunately, I have a very supportive wife, despite the turmoil I have put her through. She knows she can count on me to do my best even if that is not adequate for our needs. She understands when I ask questions like, What day is it? For a while, she would write the date and day on the refrigerator white board to help me get my bearings. Some days, my biggest accomplishment is going out to get the mail. It may be good for you to be off NT for a while. If you post and wait for a reply, that is anxiety causing. Hope your new place is near a McDonalds or other place with free wifi. Can your Blackberry do wifi only? Or, maybe you can do some barter for parts to fix your laptop. Have you diagnosed what it needs to work? I have spent hours putting computers together and taking them apart. Some of the older XP era laptops can be had for next to nothing. And, XP is still a great OS. My wife's old XP laptop is more reliable than my much newer Acer Vista craptop. Being able to communicate with others is a valuable capability, especially if you do better typing than talking. So, at least say hi from a wifi hot spot from time to time. The contact will be good. And take good care of Caleb. He does not care if your don't remember who you are in the morning. He just wants you around. As JulieRN noted. He son is eager for her to be home this summer, even if she is crashed on the couch. Kids need quantity time over quality time. My best to you and yours. |
I will be working on those coping skills while I "get myself together".
Both of my phones have Wi-Fi capabilities. So, when my phone gets shut off I'll still be able to browse from a hot spot. There is a McDonalds within walking distance from the new apartment. My laptop was dropped...the screen works fine, it just has an error message when you boot it up. I haven't taken the time to diagnose the problem yet...but, what I got from the message is something got knocked loose on the inside (or it broke). I probably need to take it apart. I'll be sure to stop in every once in awhile and let you know how I'm doing. Thanks again. I'll touch base with you soon. Nick Quote:
|
Hey Mark,
I'm betting you meant "Kids need quality time over quantity time" instead of the other way around? Or maybe with younger kids, quantity is more important. I could be wrong.....but that's what works for my kids. Maybe there should just be a good balance of the two :-) |
All times are GMT -5. The time now is 12:47 AM. |
Powered by vBulletin Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.
vBulletin Optimisation provided by
vB Optimise (Lite) -
vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.