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?