How much rest is too much?
 

I had a three month period of complete rest due to extreme sound sensitivity and migraines. An OT suggested listening to podcasts to help with the sound sens. and it worked like a miracle. I slowly got better and managed to graduate high school.

But I'm in a similar place again--about two years after the injuries. College slowly made me worse and worse this fall and this spring has been very up and down with no progress. It seems I need to spend most of the day in the room to function just a little. In my good stretches, I overdo it, despite feeling good and improving, and I have to start back at complete rest.

I saw a new dr. today at a new hospital who wants me to ween off earplugs and sunglasses. She says the complete rest stuff isn't the best. I believe her, but I feel like I'm really pushing through symptoms when I get out and it just sets me back worse.

She wants me to do a neuro-psych eval, which I've never had in the 2 years w/ pcs. Also, she wants me to do vision therapy. She says my symptoms--light and sound sens., reading problems--sound like the vision part of the brain.

I've been doing functional neurology exercises--many are vision related. With the objective data of retesting, I should be doing a lot better, but I really don't feel like it.

Back to my question, though, how much rest is too much and how do you find the line between doing too much and too little?

JB, I ask myself this same question daily. Since Feb of this year, I've increased my activity level via self-selected and mandated activities. This includes short walks (10-15 min), playing with the dog, interacting with my kids/wife more, medical appts, OT meetings, social, etc.

The net result of the increased activity has been profoundly negative on me. My tolerance to over-stimulation has decreased, issues with anger/frustration have increased, headaches are way worse, etc. I've been so frustrated by this decline that I'm at a loss.

For me, even limited activity that is no where near a "normal" daily routine is becoming taxing... however, sitting home and doing minimal activity that does not produce over-stimulation is frowned on by those over-seeing my recovery.

I'm not sure how much rest is too much, but for me more rest (I'm at 21 months with PCS) produces better days when compared to pushing things even slightly. Very frustrating.

Oh, btw, I think you have a doc that cares and is thinking about your issues... I'd say that's a good sign.

I still have a difficult time ascertaining what are anxiety related sumptoms or actual pcs symptoms and is the anxiety still pcs related?

I think it is very difficult to figure all this out....I am pretty convinced I am at a place where a number of responses to what was overstimulation are now learned responses to things that don't bug me as much as they did, like Pavlov's dog.

This is a very difficult journey we are on. I spend a lot of time asking God to help me see what is really going on so I can address issues correctly.

Bud

That's interesting, doctors I talked to told me "there's no such thing as too much rest in your situation" when I had asked the question. However, to be fair, I had only asked that during the initial stages right after the concussion when I could easily sleep for 12 hours and was wondering if that was a bad thing. Now that I'm back on a regular sleeping schedule, I haven't asked that question in a while.

So I'm not sure if the "no such thing as too much rest" mantra only applies to the critical period after the injury, or if it's also true for later stages of PCS as well.

Maybe this is a bad line of thinking, but with a lot of things I always just feel that you should do what's going to make you feel better. We're the only ones that know our own limits and know what makes us feel bad. So if resting a lot makes you feel better than pushing yourself, I say why not. Listen to what your body is telling you. Just my two cents.

Although I definitely understand the frustration either way.

Deuce,

I agree about listening to your body. We are indeed the only one who knows what it is feeling, although not necessarilly doing. Having never been this way before some choices are a real crap shoot and you hope you made the best decision.

My male friends have had a difficult time understanding why I am not
Trying harder and pushing myself (so do I at times). I tell them this isn't like a broken bone or a sore muscle in which you can ascertain how much to push and when to rest etc. this head thing tells you what to do, quite the opposite of our American way of thinking.

Bud

Something to consider is that in general, there is no such thing as 'too much rest' to anyone. There are monks who sit and follow their breathing the whole day through, thinking as little as possible, and breaking only to eat, sleep, or use the bathroom— and some will follow this routine for months and months.

So in that way, it doesn't really matter how "little" you do, as long as you're not getting any more brain injuries.

Anywho, for me, the most important thing is to stay out of bed and to stay active for the whole day, even if "active" just means doodling or going for a slow walk for an hour, doing dishes, and so on. I would call those activities "restful", in that they don't make me feel anxious, dizzy, physically, or mentally overwhelmed. Of course, to someone in the first weeks and months following a TBI, these things might not be considered restful, and would probably cause a potentiation of symptoms. So I second Deuce's idea of "do what you feel is right," because likewise, what's rest to me may be stress to you, and vice versa.

I agree, if your body tells you rest, then rest. You can't push through a concussion. I know another young student who had recovered then relapsed with post concussion after she started her first job where there were very bright, florescent lights in the office.
I keep a daily journal to see how I am doing and what things are affecting me. Some days i do light activity and other days I do nothing but rest. I take note of hours of sleep, if I exercised, took vitamins, what activities I engaged in or if I did nothing all day, if I meditated etc. Then I note what symptoms I experienced or how I felt that day. It has aided me in seeing what's working and what's not and I can also relay this to my doctor when I see her.
Just a thought? :-)

I second the idea of keeping a daily log. I wish I had done that since the beginning of my concussion, but I started to keep a video log on my computer every day for the past two months or so.

Unfortunately for me it hasn't helped in detecting any actual patterns, as my symptoms seem to be randomly better or worse on any given day regardless of what I've been doing. Sometimes there isn't any clear patterns, but regardless it's nice that if you're experiencing something that was similar to a previous day, you can check back on your log and see if there was any similarities to those days. Just avoid doing it if you're going to constantly obsess over it though, as I feel that might hurt more than help.

Still, it could be helpful to see if you're doing better on days where you're resting a lot vs. pushing through it.

I think that it can be a danger, the anxiety symptoms over time can become ingrained if we're not careful. But in the same way we can physically change the brain by positive thoughts as studies in meditation have shown.

Thanks Super Electric for putting meditation into the mix!
BTW, what is depersonalization?

Depersonalisation is the feeling of not being part of reality.

I thought I'd throw this out there as I've experienced this personally. At 16 months post-concussion my benefits provider (e.g. disability) decided that my physician/health team was not doing enough. After explaining to them about my situation/limitations, they subsequently emailed me a direct quotation from my benefits contract essentially saying I was required to participate fully in my recovery or would face suspension of disability payments.

Following this, Sun Life called to inform me that I had two choices: i. I could engage in a more active recovery involving bi-weekly meetings with an OT, or ii. I could opt out and have my benefits suspended.

Needless to say, I was upset and ruminated on this strong-arming tactic excessively for months (and continue to). The increased activity levels since this call, though some it has been helpful, has put me in a downwards spiral with many more steps backwards than forwards.

My point to this is that, at least in my case, my activity level has been greatly impacted by Sun Life who feels they know more about my recovery than I do. That is, I don't necessarily have a choice. I hope others have not faced a similar situation, but I suspect they have.

I have been noticing that I feel the best if I sleep 7-8 hours a night. On the weekends I always sleep in, sometimes up to 10-12 hours and I actually feel worse throughout the day. I don't know why this is, but I'm pretty sure it takes me shorter to feel "awake" on days I sleep less whereas on days I sleep 10-12 hours I don't feel awake for the first 5-6 hours of the day.

Also, I always feel better in the 2nd half of the day. No clue why. One would expect it to get worse towards the evening, but it's the exact opposite for me.

Yes, I tend to feel better towards the latter part of the day, I've heard it mentioned on here before from others too. One theory is the that concussion can knock your circadian rhythm out of sync, like being in a different time zone. By the time I go to bed I sometimes feels wide awake but now I can deal with it. I really don't think it's worth sleeping for more than 8 hours unless you're ill, I don't think it's of any benefit.

I also find that I usually feel better in the latter half of the day. Although weirdly enough, for some reason lately if I'm having a day where I'm feeling okay when I first wake up then I get worse as the day goes on, but if I'm not feeling that good when I wake up I get better. It's like a weird inverse relationship, I dunno.

With regards to the original topic, I was wondering something these past few days. Is there a good balance to find between resting and being active? Because I feel like I've been told that I should rest as much as possible by some people, and then different people say I should try to keep my brain active throughout the day (you know, with light cardio and stuff) when I can. So is there a good way to find a balance between the two? Or should you even try to find a balance?

Although even then, I sometimes struggle to figure out what "rest" is at times. Pre-concussion, resting for me would be sitting on the computer or watching a movie or something, laying around. But then when you get the concussion, they tell you to limit screen time and all of that. So aside from just laying down with my eyes closed (which you can only do for so long), I've always struggled to figure out how to rest since the beginning. Probably because I'm the kind of person that always likes to keep doing things.

Hi Deuce,

Regarding rest: this obviously varies from person to person, and even from moment to moment, but rest doesn't necessarily mean physical rest. My worst enemy is my mind, and so I could be lying down struggling to meditate and be "working" at it very hard. My thoughts can be so taxing at times, that what would appear to an onlooker to be "rest" actually feels to me like dangling out the side of a speeding car on the freeway. By the end of one of these episodes of mental mayhem, I have usually experienced symptoms return.

Then sometimes I'll go for a walk and return home feeling completely refreshed. The physical exertion being significantly less taxing than the mental. Or I've discovered that I can sit down with a pad of paper and draw thoughtlessly for an hour, and likewise, feel totally soothed afterwards. Other times neither of those work at all, and I have to try for something else. And then there are days when nothing seems to work, and I just have to clutch to that speeding car till it stops or I fall asleep.

There's definitely no clear answer. But keep playing with different methods and don't give up!

Yeah that's exactly how I am too. I'll be laying on the couch trying to rest, but my thoughts are still racing a mile a minute. And then one things leads to another, and I wind up needing to Google something I was thinking about, and then it all goes downhill anyway. Sometimes I feel like I'm using more cognitive processes when I'm "resting" than when I'm actively doing something. I remember in my first month I literally took a whole day to just lay in a dark room and rest the whole day because I thought it would help, but I winded up just feeling worse after.

I've found I usually feel best when I'm hanging out with people. I don't know if there's something to the power of distraction, but when my mind is off of things I feel my best. But it's like you said with your activities that make you feel better, this isn't always the case. Last week I was hanging with friends and felt crappier than I did when I was alone earlier in the day. There's definitely no clear method on how to rest, because some days none of them do work. I think that's the most frustrating part about it.

But thanks for your comment, glad to know I'm not alone with not being able to find clear methods that work. But we must not give up hope.

I'm the same. On days when I'm recovering from over-stimulation, my thoughts race out of control, leaving me heavily taxed. I posted this a couple weeks ago, too much sound that occurs during showering puts my mind into a mental race that takes the wind out of my sails for the day.

When I'm in such a state, distraction is my best weapon.

I have found that rest needs to be either sleep or just low key activities that keep the mind busy. As mentioned, mindless drawing keeps the brain going just enough to keep racing thoughts at bay. Any manual activities are good, especially because the hands cannot move faster than an injured brain can tolerate.

Trying to rest without an activity to do means the options are limited. Resting in or on a bed creates a risk of tossing and poor neck and head posture. I find that unless I am sleeping, bed is not a good place to be. If I am not sleepy enough to fall asleep, I rest in my recliner. If I fall asleep, I can do it without aggravating my neck.

The old idea that lots of sleep is important has been dispelled. Normal amounts are adequate. What is more important is trying to get good REM sleep.