Comparing notes on setbacks
 

Just wondering how long other people's setbacks/relapses tend to last. I had been having a good week - headache lessening, going for daily walks in the swimming pool (had worked my way from 5 mins up to 18 mins yesterday) with no real side effects, sleeping somewhat better, feeling cautiously optimistic...

And then wham! Another setback. In a nutshell, I did too much yesterday. Participated in a 1.5-hour work-related seminar by phone (listening and taking notes), had a couple of long conversations (one by phone for an hour), walked in the pool, watched a bit of TV, surfed the internet, sent a few emails...in short, too much too soon. All of which culminated in your classic headache-and-need-to-lie-down around 8 pm.

The headache has carried over into today, and once again, I'm feeling demoralized. Each time I have a setback, it seems to take me about 3-7 days to start feeling better. So frustrating. There doesn't seem to be anything to do but rest + wait until things gradually start to improve again.

Is this similar to others' experiences? Any suggestions for staying positive and/or encouraging the healing process during these relapse/setback phases?

Well I can certainly relate. My entire PCS recovery is nothing but set backs. Somedays I will feel good thinking I'm one step closer to my old self and the next I feel right back at square one.

Every time I have a set back I get depressed and want nothing to do with the outside world, feeling extremely ashamed of myself and frustrated.

A difficult situation with setbacks is when people ask if you're getting better. I tell them yes, but many days I don't feel like I'm improving at all.

In all honesty, I have no form dealing with them. They are discouraging and frustrating.

My question for you is, how are you dealing with working? Do you work fulltime?

Come August 1st I'm back to work with no other options and I'm terrified. If I don't I'll be homeless and starving. I will be forced to push through symptoms.

Greenfrog-

I experience similar setbacks, but my last about two weeks. Days 1-5 are generally debilitating migraines, dizziness, disorientation, back to the beginning symptoms. After that the next 9 days or so are just a hazy, feeling dazed, exhausted and migraines every 2 to 3 days.

After feeling about 80% of my former self, I was forced back to work due to hitting the end of my medical leave. I lasted 3 days. Then ended up back where I started. I've spent the past three weeks trying to get some of that back 80% back.

Sadly, I have lost my job because of exhausting all medical leave, but I am rendered completely nonfunctional when I have a setback and could not in anyway get to my job or do it.

It's awful.....

Stop trying to compare to one another or to your own past. We are all different people after suffering a prolonged set of symptoms from a concussion. Everyone's ups and downs are different.

My best advice is to use hind sight to try to understand the subtle signs of over-doing it. Many times, they are there but do not lead to immediate symptom return.

In other cases. we can look back and realize that we overdid something.

I don't live in fear of triggering symptoms. I just live a much simpler life. The peace from living a simpler life is amazing. Stop trying to keep up with the rest of the world. A recent study pointed out that most everybody is damaging their brain with too much stress.

Do you want to live a life where you die with the most toys?

Or, do you want to live a life where you die leaving a heritage for your family from the many simple memories you have made together?

I find very few of the "Toy Collectors" have a life of peace. They are constantly under stress. They occasionally have moments of sheer excitement with their toys then they return to their life of stress.

I don't look at life as a choice between the glass being half full or half empty. I look at life as living with a glass that is the right size for myself and those I care about.

Thanks
 

Thanks for the helpful responses.

Nitro: I'm currently on a short-term disability absence from work.

Nitro and SEM: thanks for sharing your experiences with me.

Mark: I think paying attention to the subtle cues indicating a risk of overdoing it is good advice. I have become better at doing this, but on Wednesday I mistakenly assumed I could add some more activity into the mix. Now I know I need to take things more slowly as I recover.

Thank you Mark in Idaho
 

"I don't live in fear of triggering symptoms. I just live a much simpler life. The peace from living a simpler life is amazing."

I so agree with your statement...I'm no longer part of the rat-race. I miss my career at times and the old me...But the simplicity and peace of living is truly amazing. There are some silver-linings.

Just got home in tears after being sent home from work after last week I thought I had been making so much progress. This post has made me feel a lot better, thanks Mark