[Joannetb]

I am wondering if some could share things they may have done to combat the feelings of isolation (or going through this alone). Although this website is fantastic and I have a friend who has PCS as well, I can't drive right now because of slow response times and am at home with my husband and son.

My husband did watch one of those "so you look great videos" but he can get annoyed with questions I ask for the third time, etc. then I feel terrible and the extreme sadness kicks in that I've been feeling with the PCS as well.

Reading some religious material has helped a bit, but wanted to know if anyone else has things that just makes them feel less isolated.

Thanks so much.



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[Mark in Idaho]

I have found that I do best when I find a way to keep busy with something. Trying to find something to look forward to other than getting better is important. Avoiding the catch-22 of depression causing moodiness causing more depression is a fight that must be fought.

Have you looked for a brain injury support group? The once a month meetings at mine are worthwhile.

My wife has taken up a craft called Swedish weaving. A bed size piece can take 70 hours and produces some beautiful pieces. Google Swedish weaving.

[brownehn]

Joannetb,

I have exactly that problem too. Everywhere I read about PCS it says, family and friends; family and friends. They ain't kiddin'. I've dealt with almost nonstop stress and grief since my Mom's rapid decline starting almost exactly a year ago and find myself alone in a fair-sized house with my comfortable routine and generally cheerful--and disciplined--nature, destroyed.

Every time I interact with someone I feel better but I get so damned little of it, with family not in town here and only a smattering of casual acquaintances. My little world used to revolve around supper at 3 pm. Now eating has become a mandatory chore and I hope just to get through the day. Often when my mood is good loneliness rears up. I think a lot of our negatives are perfectly natural, acceptable. Before I could escape into internet work--especially researching PCS--and reading but those things aren't as reliable now. Nothing yet is safe except deep relaxation or even sleep and of course you don't want to be in that state all the time.

Mark is right on with support groups. The best kind of interaction is with others in similar situations.

[Bud]

Joanne,

I stayed at home alone during the days for 10 months after my injury. I was able to drive for some of that time but around the 6 month period I could no longer keep up with the traffic as yourself.

I spent a lot of time planning dinner for my wife and then cooking, burning and redoing!

Praying and reading were also a big part of the day and reminding myself I was never alone.

I was able to somehow force myself to interact with my wife when she was home during the times I felt alone and broken. I had sort of decided that PCS wasn't going to rob me of everything so I did what I could...even if it was a short conversation. I think to sum it up I looked for ways to show I was paying attention within my altered capabilities.

Tell your husband that he is a HUGE part of recovery and that I have never in my now 56 years faced something so mysterious, frightening and uncertain as a head injury. If they think we are different, try being yourself knowing you are different and can't figure out how to get back.

Dont allow the discouragement to hold you down full time...you will get better.

Bud

[Joannetb]

Thanks you guys for all of the encouragement. Last week was a bad one for some reason. I had a few days that I felt so down. I really like Bud's description of what it's like...the feeling of not being able to come back to yourself.

I had an appointment with my neuro psychologist on the weekend, and she pointed out that in my explaining to her times when I'd get stuck (ie. Debit machine, ordering food) I would panic. She thinks that although I've never had anxiety, my concussion is bringing out anxiety because things are more difficult and scarier.

She has now said I can try things for 10 minute increments as long as I don't get a headache.

I've added deep breathing, praying, and going to my mom's for a change of scenery. I am also looking into a support group.

Thank you so much for being there. It means so much to have people that understand.

J


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[Bud]

Joanne,

Funny you mention getting stuck and panic in the same breath.

I have had times where I would get stuck trying to order from a menu, I would just go blank and unable to narrow my decisions down (after I was finally able to get back into public) and my wife would walk me through the process. All the embarrassment led to really working to keep panic down and not ruin what was an otherwise nice outing.

Bud

[Mark in Idaho]

Joannetb,

Something I have relied on for 15 years is rehearsing things I need to say or do. Rehearsing a pin code or what I want to order or ask the server makes a big difference. If I try to do any of these functions spontaneously, I will likely freeze up, get frustrated and misspeak.

I have found this has a double benefit. First, I don't freeze up. Second, I speak more thoughtfully.

There is a Bible scripture that promotes this. James 1:19

........ But everyone must be quick to hear, slow to speak and slow to anger......

The first two help with the last one as some of us struggle with outbursts.

I have rehearsing down to a subconscious process now.