Lately I've been thinking about setbacks in my progress, I've had plenty of them. My setbacks come with no warning signs, they just hit me out of the blue if I try to do anything which my brain deems is too much. This generally takes me around a month to recover from and it happens time and again with no way for me to measure how much is too much activity. One moment I'm fine, I'll go asleep that night, wake up in a fever, feeling very weird and sick. Boom, here we go again!

With setbacks it feels like, at times, that my progress has been set back to when I was first injured. But surely this can't be the case? if this isn't the case, why does it feel like my injury is a fresh one, rather than 14 months old?

Also, if I can stop these setbacks happening at all, ie I live like a monk and stare at the ceiling for a few months (this generally makes my symptoms vanish) if I can hold this "symptom free state" for a long time, does this generally make pcs more likely to be gone for good?

This is the most sneaky, frustrating and random injury ever. Highly annoying.

Interesting. I keep a daily log of activities, medication and nutrition. In all of my setbacks there have been a string of overactive and emotional events leading up to the setback. It's right there in writing but I will agree it's hard to judge when the tipping point is coming. This is in contrast to what you're saying about waking up to it randomly.

As I've stated before light is a huge trigger for me so that usually plays a role as well. I do think emotional stress and solid sleep are the biggest factors in brain injury recovery. Isolating yourself could be helpful but we also need human interaction. Trust me I'm in a state of loneliness and it isn't helpful.

The longer one can remain symptom free, the more chance the brain has to heal. But for some of us, that healing will not be complete. It will leave us sensitive to triggers. Many in this situation learn to recognize those triggers just before they reach critical mass. We can remove ourselves from the triggering situation and avoid a prolonged recovery.

For me, it would be any of a few things. I may need to reread a line of text, I may struggle to understand something I was hearing, my eyes may go a bit screwy and struggle to focus, and a few others that I can't remember at this time. But, as soon as I start to notice this struggle, I need to remove myself from the situation so my brain can get a break and reset.

Sometimes, I can stay in the environment but redirect my mind to prevent the chaotic thinking struggle. I might close my eyes, I may need to tell everyone to stop talking for a moment. I do this by calmly redirecting the conversation with something like, "Slow down please. I am struggling to understand what you are saying." If I say it calmly, most will respond calmly. That helps.

The gist is that many of us get back to a more normal life by learning to moderate our environments so the triggers are less frequent.

A good day does not mean we can get busy and try to exceed our normal limits. This often results in that next day crash. The frustration at the next day crash can cause that recovery to be prolonged.

In my case, things improved very slowly such that I would finally notice that I could endure a trigger without a need to adjust and leave or such. I can go to any restaurant without my earplugs. It took 10 years for me. But, I have also learned how to respond to the noise.

It is frustrating but getting frustrated will usually make things worse. Taking a quick but calm action and starting a new step works best for me. Like, if I bump my head, I acknowledge the bump (ouch, or some short term response like 'whoops, that wasn't smart.' or I check my self thinking I bumped my head, I'm not bleeding, no big deal, let's move ahead) but it is a response that is finished. Not, "When will my head stop reacting to bumps? or other open ended responses. Open ended responses just feed anxiety.

Screens seem to be my trigger for getting worse. I can tolerate noise, music, busy areas, light and even driving doesn't seem to cause symptoms any more. But if I try to use a screen, watch tv, play a video game, watch a film or read on a screen for too long, I'll go haywire.

I've had several times where my symptoms have vanished and no amount of screen time affects me. But eventually symptoms have crept back.

Because I have had these times when screens do nothing and I feel totally normal, it would point to a suspicion that my injury is t a permanent thing, ie, the nerves are damaged and healing as aposed to destroyed and dead. Would you say this is a likely scenario?

If you can tolerate screens some times but not others, your screen difficulty is not permanent. Your highest level of screen function may be your limit but your reduce screen tolerance is not. There is likely some other stimulation that is reducing your ability to tolerate screen time.

It like complaining. When I am holding my child on my lap, I can only type 15 words a minute. When I have nothing on my lap, I can type 50 wpm. Is this 15 wpm a permanent limit ?

Yes it is but only when the other factor is at play, (child on lap). But, over time, the child can learn to sit quietly on your lap so you can type faster or even sit next to you where you can type at 50 wpm.

So, yes, you may need to accept that in some situations your screen time has a limit. As you learn to work with that, your tolerance of screen time during those situations may slowly improve.

btw, Many get totally burned out by video games with the crash not showing up until the next day.

I guarantee you that there is another factor at play when you crash. You just need to figure it out.

Be encouraged by your maximum capability and work to close the gap between your max capability and your limited capability. Even healthy brains have times where they have limited capability.

My maximum capacity at the times when my symptoms go away is normal screen limit. No symptoms regardless of screen time.

I can relate to most of your comments. Lately I have had multiple episodes where my left eye has uncontrolled movement. Either moving side to side or rolling lasting two to three minutes. I will get a slight pull in the eye just before it starts. It has been very scary, leaves me unbalanced and unable to process the environment where I am. It takes two or three days to recover....fatigued and what I call swelling, where my brain feels too big for my head.

I am finding this thread quite interesting. Thank you Mark, for all of the information I have gathered from you by reading through this. I am at almost 10 months, and am now able to accept the things that I cannot do...at least for now. I have pretty much had to stop working at both of my jobs (as a city worker And mortgage broker) for now. I am hopeful that my acceptance of how I need to handle things now, will actually help me recover a bit...because if I'm happy, I feel much better than when I am stressed and worried.

I, too, shut down when there is a time sensitive project that involves stress.

What I've learned is that in the broad scope of life, things don't Have time limits so I can allow myself to relax. I believe things happen for a reason.

I tend to jump around from thought to though so please forgive the rambling. I've been like this for almost 10 months so sometimes just have to laugh at myself.

That's kind of the important thing I wanted to bring up in this post. We are a little different with our issues since the concussion. It seems you may both be getting a bit frustrated with each other, and that may be partially because one is not able to focus on one thought and tends to jump from one concern to another, at times not explaining himself fully. I totally understand this because I still cannot have a normal conversation without getting stuck or even saying, mid sentence " look at the Squirrel!" Then we have Mark who has a huge heart and is trying to do the best he can to help. I'm sure things need to be somewhat orderly for you, and trying to help someone who's a bit all over the map can be difficult, and really challenges the limits of what you can deal with as well.

To sum up perhaps Doozer needs to do a bit more research on his own rather than relying on Marc for answers. The only ones that know us well enough to truly know what our limits are is Us. Even my Husband doesn't know sometimes when I'm at my limit, so what does that say?

And Mark, everything you say and all of your responses help us so much. Just try to remember some of us struggle to explain ourselves properly. Because we have trouble organizing our thought.

Oh and Doozer...come to terms with the fact that you may always have set backs, and you'll be less stressed, and therefore less likely to have them.

Love you both!


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Joannetb,

You made some great points. What I was trying to get across is the need to self-examine how we communicate and realize that what we think we are saying is not what others are hearing, often because we have context to the comment in our mind but that context is not passed on to others. I know this because it was one of my biggest struggle. I would expect others to understand my context without explaining my context. It was part of my intensity of my thought processes.

The issue for people to understand is a very common PCS symptom is "Rigidity of thought." This can manifest where we have a very defined meaning to what we are saying but others can be at a loss. This also can result in wanting a specific answer that fits that context so when others respond, we may try to force fit their answer into that rigid context.

It is why I have learned to use the word 'likely' and other words of probability to reduce the rigidity of my comments. Unfortunately, many do not see these words as they read.

When we accept that we may be exhibiting rigidity of thought and projecting that rigidity on others to negative benefit, choosing to try to change can be beneficial. But, it is a tough issue because the natural response is rarely the better response.

Believe me, I know this issue because my thought process was Black and White in High Definition 3D. It has taken a lot to soften to my current level of intensity. I know it would help if I could lower my intensity more. I'm trying.

No you are not too intense or rigid. You are a Godsend! That being said, people are so desperate to find answers but shouldn't expect you to be the Fix. That all. You are an amazing person who has encouraged me unknowingly to learn how to deal with this whole thing.


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