My brother-in-law came over with his girlfriend, and I had 1 1/2 beers (is this anything to feel guilty about I wonder?) but my husband had, oh, I'm guessing six, so he's passed out on the couch, snoring. Our daughter is fast asleep upstairs, blissfully unaware, her lullabies still drifting down the staircase. I've been sitting here for an hour, just wishing my husband was awake, so I'd have someone to talk to or at least someone not snoring so loudly.

I miss doing the things I love to do. I miss riding my bike, reading books, playing Just Dance on the Wii, hiking, gardening, and writing. There was a time when I used to love getting this kind of alone time, but now, it just feels like a waste because I feel like I can't do the things I enjoy.

I can only console myself with the thought that, slowly but surely, I'm getting there. I'm so close really, but it's just such a slow, painstaking process. Any little step you take could be the wrong decision, could set you back, and sometimes it is hard to tell when you are doing too much or not taking care of yourself as you should.

My husband is great, when he's not passed out snoring, but he can't understand how frustrating and depressing this syndrome can be! So my fellow sufferers, I hope you don't mind that I'm complaining, and may the end of your nights be better than mine!

I have always said to people who really care that this is a very lonely injury. One can go out with an elbow in a cast, or receive lots of visitors at home if you have a broken leg. The social isolation has been very difficult.

I hope you feel better tomorrow. You will continue to improve. Slowly but surely.

Further to lonely....missed another party tonight. My spouse was encouraging me to go even for an hour. It was an end of season party for an organisation I am involved with. I had lain in bed all day (more or less) trying to recover from a busy day yesterday...and just couldn't face the noise of a big party, multiple conversations, music, etc. so another declined invitation! And I don't get many after 20 months of solitary confinement!

But next year I will go. We have to hope!

I like your attitude. And tomorrow is a new day!

I know how you feel, I am approaching yet another summer where I would usually enjoy camping and kayaking. I am trying to sell my trailer and I wonder whether I should sell the kayak. It is really hard to find things I enjoy that I can do.

I am having particularly bad week. I have been really dizzy and nauseous. It is hard also when you can watch t.v. or read a book due to my vision issues. Listen to the radio is becoming stale. The isolation at times can be crushing, but I keep hoping for better days, these set backs are really depressing but I keep trying to put one foot in front of the other and keep going on.

It WILL get better.

Oh my this can be lonely.

A week ago or so I sent my hubby, daughter and her friend to a play I wanted to go see too - but just couldn't ***yet***

Thank goodness for this place to share ourselves with others who understand and care.

Here's to imagining better days to come.

pm

It's such a hard balance-trying to be engaged with our family and world and yet trying to provide solace to our healing brains.

Yesterday, I went to a small pre-school family fun day for two hours (armored with sun glasses, ear plugs, extra propanolol and L-tryptophan). I wanted my youngest son (5) who is graduating to have a memory of me with him having fun after 10 months of saying no.

And today, I am in bed, recovering from the event which brought on a migraine. I'm trying not to feel bad, but it's a reminder that when we do push our limits, these limits sometimes have to physically reinforce themselves through pain so we respect them.

Sometimes we say no, sometimes yes. Through time, hopefully, we get to more yes. Hugs to you all.

I think you nailed it right here. It is very difficult to balance our family/social life with this injury because we all fear it will cause a setback. I can relate to this personally just yesterday. It was mother's day and my sister was begging my mom, dad, and I to go to a concert together. Well of course my mom worrying about me asked me how I felt about going. Of course I didn't want to go as I knew it would be horrible for me. But I just couldn't say no.. I wanted my mom to enjoy mother's day and not have to alter her day because of me. Needless to say I ended up going and had a horrible time from the loud music, crowds, etc. I think a concert is probably the worst place you could possibly be with PCS. Luckily I found a spot in the back I could sit which made it so it wasn't as bad.

I am paying for it today. Not only did I get in bed late, but I had trouble sleeping and tossed and turned all night. Plus I had a few beers. Yesterday I was feeling GREAT.. almost like myself again. I even cooked a big mexican dinner for my family for mother's day. And today I'm groggy, tired, dizzy, foggy, and not feeling like myself. I just want to go rest. I am hoping this event did not cause a huge setback for me and it will only take a few days to recover. How depressing. I used to go to concerts all the time not thinking twice. Now it's such a struggle. And nobody really understands unless they've gone through this. BUT I'm staying positive because I feel I am on an upward trend. My physical therapy is helping and I feel with a quiet day of rest today I will get back to where I was and hopefully continue that upward trend.

I certainly can sympathize with you. These circumstances can be very isolating, and we already live in a way which encourages too much isolation, too much distance between us.

I have no solutions to offer because I also experience such feelings of isolation at times, looking after my wife. But you have my sympathy.

geo

DO NOT SELL THE THINGS THAT BRING YOU HAPPINESS AND JOY!

My wife, a very wise woman will not allow me to give up the things that bring joy into my life. I thank her every day. Thing is, I haven't used my 4-Wheelers for about 3 years. We've been camping a few times in the same amount of time. We used to go camping any time we had a free weekend. But we still have the camp trailer and the 4-wheelers.

Take my wife's advice. If it brings you happiness, hold on to it even if you're not able to enjoy it now. It gives you hope that better days are coming.