Lonely Tonight
 

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.

Thank goodness
 

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

I agree George. The spouse suffers too.

It is a lonely injury for sure, as often the best therapy is quiet time and isolation. I did notice a trend that a lot of the previous posts mentioned a wife or husband. I'm not trying to take away from the suffering you're feeling, as I know it is extremely difficult not to be able to do things with the ones you love.

I feel lonely to another degree in the sense that I am single and feel despair that it is hard to date and meet people when I'm not myself these days and a full recovery seems far off in the horizen (I'm 2+ yrs of PCS now). I think how special it must be to have a significant other who will stand by you in these incredibly difficult time and wonder if I will ever find someone as the debilitating PCS symptoms continue to linger...

I know what you mean
 

Hi comeback kid,

I am much older than you but also single, before this concussion I had intended to start dating again but I am not the same person as before the concussion. I would have said I like camping, kayaking, watching t.v., going to plays etc.....I know can't do any of those things and not sure if or when it may happen.

At times when I don't feel well it would be really nice to have someone around to make me a cup of tea or just morale support. I also have a bunch of thing around the house I can't do anymore and I still can't drive. It is really hard always asking people for favours. After 15 months it is getting stale.

But, try to put yourself out there, you may find an understanding friend or maybe try joining a support group, meeting new people can be a positive and there are ALOT of really nice caring people out there, and of course you have all of us on the forum.

Good Luck, I feel your pain.

I can sympathize completely. I have not been dealing with this as long as you have at all, but I am a 25 year old female and single and although I have a couple really good friends and family who have been supportive and listened to me complain, it is still lonely. It is kind of hard to explain but even at work I feel like I am alone because nobody really truly understands this issue!

I find that I go between wanting to have someone to talk to and hang out with and not wanting to talk to anybody, just wanting to have my own little "pity party" as my mom calls it. On bad days I just lay around in bed and sleep most of the day until I have to get up for work at night, and on good days I'd like to do something but I am afraid to push it too far and not be able to function at work at night.

Anyway, I guess this isn't really very helpful, but I just wanted you to know that I understand how you feel!

I don't want to stray into ideological or religious realms but rather than loneliness or isolation that we feel its is more of a loss of spirit or soul that causes the empty feeling.

Many of us post injury manage to retain a "core" set of family and friends but even their company something is missing. While their lives are continuing and evolving I see myself almost on the edge like a ghost.

Many people here find relief through meditation or spiritual activities does this restore something that has left us when we become injured ?

I can't articulate or put my finger on what I sense is missing - does anybody else feel the same ?

I think I do know what you mean
 

I think there are a few things going on here, that combine together to create this feeling you are describing. I'll just speak for myself, and then you can decide if your feelings might have the same causes as mine!


For one, it's the depression that so often accompanies PCS. When I was feeling depressed, I felt so disconnected, so lost within myself. As soon as my antidepressants kicked in, it was as if a switch had been flipped. Suddenly, I had energy, more resiliency, and more focus, but best of all, I felt connected and positive. I know I'm lucky to have found an antidepressant that works so well for me, because otherwise, this tumultuous time in my life (issues other than just the PCS) would be almost unbearable.


But even after my depression subsided, something still wasn't right, but I think I have figured out what it is. My husband and I got in an argument last week in which he said I had no compassion anymore. At first, I didn't understand. I mean, wasn't I doing all the things I was supposed to do? I was hugging him when he looked like he needed a hug, offering words of support and encouragement, etc. What else was I supposed to do?


My husband made me realize that I was offering him intellectual compassion--like, I realize you are suffering, so I will do x, y, and z, because that's what a supportive wife would do--rather than empathic compassion--like, I feel how much you are suffering and my heart breaks for you. I suppose this would be okay except this is soooo not me! I am an incredibly empathetic person. It's one of my better qualities normally. Why the change?


It is not that the head injuries have caused a personality change, but rather, PCS has made me self-protective above all else. For many months, I couldn't afford to feel my own emotional pain, let alone anyone else's pain! I put up a barricade to protect myself, and even though I'm so much better now and better equipped to handle stress and difficult emotions, the wall was still there. To detach oneself like that can make you feel like you are losing your soul! I am hoping now that I recognize the problem and am doing so much better physically, I can finally tear down that wall.


My best wishes to you!

My 2 Cent's
 

I think that people that are fortunate to have a spouse should address these things to a marriage therapist or counselor.For the people that do NOT HAVE ANY SPOUSE WE REALLY DO NOT WANT TO READ THIS type of complaining!!! Be happy you have someone.I wish I could get a caregiver or a nurse to come see me once or twice a week.These types of threads are the threads of things that I feel you do not say to people with traumatic brain injury.

That is my 2 cent's and I hope people can appreciate these honest words!:cool:

Meditation has help me
 

I find that meditation can have a positive effect on me and seems to change my outlook.

In terns of feeling empathy for others, I find I really do not have the energy to spare to deal with other problems. I have 3 teenagers at home and every time there is a crisis, it just wipes me out. I use to deal with a crisis or two every day but with the pcs, I have a hard time keeping my self up.

I feel badly that I am not 100% there for my kids, mother, friends, etc., but I am doing the best I can and to feel guilty for my inadequacies is counter productive to my recovery.

I have missed hockey games, dance competitions, birthdays and other important events because I am just not well enough. I find that these missed opportunities is what really depresses me. I feel life is passing me by while I am resting upstairs because I can not tolerate noise..... I am really considering trying an antidepressant.

Chin up....better days ahead. Maybe we can all start singing favourite things from the Sound of Music (lol).

Don't like when people try to dictate what's ok to post
 

Of course some people have it worse than others. I'm not looking to get into a contest. I know I was feeling sorry for myself, but the night I posted my original post, 3+ weeks ago, I was severely depressed and had a lot of difficult things going on that I did not outline. I'm doing better now, so I can look back and feel a little bit embarrassed by how much personal information I shared, but I do not regret the sentiment, which you seem to be overlooking--when you have PCS, it can be very isolating, no matter how many loved ones you have to support you. It is something we all share, which is what I was trying to highlight.


Anyway, just for the record, it is too simplistic to say to anyone, "be happy to have someone" because if you are constantly fighting with your spouse, that is going to negatively impact your recovery. That said, I AM happy to have my husband, but PCS can be very damaging to relationships, as I'm sure you know, and every person has their own struggles.


Thank you for your flip suggestion of couples therapy. I've been trying to get my husband to go to therapy since the beginning of April, but he won't go. So yeah, we all have our sore points, but at least I was not trying to be cruel towards anyone in my post.


Sorry to those of you who didn't appreciate what I had to say, but you have no right to try to censor me or anyone else. Everyone has the right to come onto this site and express their frustrations. You don't have to read my posts if you don't like what I have to say. That's my 2 cents.

Doing a lot better!
 

Thanks for the positive vibes! I'm actually doing a lot better than when I originally posted this! It's kind of an old post!


That said, I don't think I'd be doind as well as I am today if it weren't for he antidepressant I started taking. This syndrome would depress anyone, and I think damage to the brain makes us less resilient. When I first started feeling depressed, the smallest things would utterly devastate me. On meds, things are back to scale, and I have perspective again. My view is, whatever gets you through the night! Do whatever it takes! There's no shame in taking an antidepressant. It can literally be a life saver. It has been for me.

Thanks everyone
 

This is such a cruel injury. I don't look I injured except for my gait and my rt hand curling at times, but I am suffering. The thought of the isolation going on for years is terrifying. I'm a people person. My whole family is like that and my career. The more I give to others the more my life is fulfilled and now others are taking care of me.

I feel for those of you that are single. My loneliness is only comforted by my family.

I am less aware of others needs since the accident and very focused on my own. This is not like me. Anyone else face this?

Thank you for all the postings. They've really helped tonight.

Jace

Never give up!
 

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.

I like that advice. I've been debating whether I should get rid of my hockey equipment. I know I will not play the game competitively in the future, but I like to hope when I have recovered more I could go for a skate and shoot some pucks around in a safe environment. That would bring me great joy.


I'm sad to see that my original post seemed to have incited some comments others found hurtful. By no means that was not my intention and I was not trying to take away from the pain you feel or make it into a competition of who has it worse. I guess the grass is always greener on the other side.

That's interesting the point about empathy; for me its been yes and no. I have zero empathy for (healthy) people who complain about things such as how busy their day, how hard their workout at the gym was (I would give anything to be physically active again), or how "people are stupid" (as my room-mate would often complain about her work). Another pet peeve is when (otherwise healthy) people complain to me about the headache they have this one day; I find it very hard to be empathetic as I'm now at day 806 of consecutive headaches.

On the other hand; my heart breaks for anyone I hear who has got a concussion or is struggling with prolonged symptoms. I never understood how my Grandma would be tired so often and wouldn't come over for dinner, but now I know what its like to be unbearably fatigued. I previously had a hard time comprehending depression and how you just couldn't get more involved and get over it, but now I understand better the big monster that mental health can be. Really, any medical condition that limits one's daily activities or causes suffering I feel empathetic too. I like to think this will make me a much better health care professional one day, as I am in pharmacy school training to be a pharmacist.

Jazzy,
Your wife is wise. Your post made me think. Many activities bring out my symptoms, but I think I could camp with my family for a weekend. We have been to some quiet places in the past. If it doesn't work we could come home. I would love to get out as would my fam.
Thanks, Jace

Don't compare
 

There is no need to compare one person's pain and suffering to another's. remember that when we post and reply it is support one another, not to hurt one another. Don't presume that those that have a spouse have it easier. Sometimes a spouse can add stress rather than be helpful. Everyone's story is unique. We are all suffering in our own ways.

Su seb

I like Jazzy's advice....although my spouse got rid of my hockey helmets and his own downhill skis). I still have my bike although I am not ready to ride yet. I will again though.

Lots of wisdom from so many good people.

No offense intended
 

My post wasn't about comparing my pain or my wise spouse to anyone else's. My wife said it. I gave her credit. If anyone is offended, that was not my intention.

My point was simple. If there was something that gave you joy before your injury, it can probably bring joy to you again, even though, at this moment, you may not think so.

Me personally, if I have to give something up to meet monthly expenses, I'll start with my cable/satellite TV service, then go down the list of things I did AFTER all the fun I had outdoors.

Not you!
 

It was not you who caused any offense! If you read back on the posts, you will see what you missed. I appreciated what you had to say!

Yes
 

It was not in reference to jazzy