isolation

[mary lutz]

It has been over 5 years since my accident. I continued to work part time for over 2 years. After the injury, the first thing to stop was any life perks, such as all social and recreational activiites as work and family responsibility was priority. By 2 years, I was so worn out from everything taking much longer to do, so part time was about 60 hrs a week.

 

Shortly after stopping work, my youngest child left for college. By now, friends had stopped calling for the most part. The social circle became very small. Even though I may look normal, I dont get jokes quickly or respond easily. I also recovered from some horrible depression. I also have other medical problems that limit me. Since Im not married and my parents are deseased, contact with my kids is often all there is.

 

I have spent a lot of my time searching for help to recover, but evidently west virginia is very far behind, I have found this website and participated in conversations, but gotten no response. I have contacted our local voc rehab, but they dont return calls. I have heard through this site that there is a mentoring program, but evidently not available to those outside washington state or there is something I cant figure out.

 

This network says at the top of the page "you are not alone" but it sure feels like it. I just dont get it-there are supposedly so many with brain injury and I dont know any, and after being on this site for a month and not one person that has been here taking the time to respond, I dont see any reason to waste any more time here. I am a member on a ptsd website and it is nothing like this, however, its not about head injury.

[Nancy Thomas]

I do the same things.... really want to bitter about this too.... I don't think that is me.... but hell - it could be.  Sucks to loose your memory and really no one to talk to or understands.... and tomorrow I won't remember it.... it's like I watched Rudolph the red nose this week - I know I should of known that one - from my childhood and from raising kids.... but I didn't... cried all the way thru it.  I had been married for 25 yrs - went thru a nasty divorce - ended up moving away from the town I had spent my whole life in.... got in a wreck - died on scene and 3 more times at the hospital... I lived - but nothing is the same - family and kids won't talk to me.... don't know bout you - but it's real easy for me to get used or taken in - I try to believe people...

 

I'm trying to figure it all out..... if you do - tell me how ok
 
Michael R said:

I left a bunch of messages last night on here...as usual I don't remember 99% of what i said. I am absolutly alone with no one to talk to..I was brought up not to be a crybabay,always be a tough guy...Im the furthest thing from a tough guy,,,but old habits die hard.I said all of that because I have kept my problems to myself,, for too long and it's had an effect on me...next thing I know, I am posting comments on Yahoo news...and I so don't make sense...but I just have to talk even if to strangers and I like it that way, because,I get to run off at the mouth and I don;t have personal relationships...I don't like getting close to people...all of my family is dead...either phisically. or dead in the sense of I have nothing to do with them.last week another one died and my ,I had 2 dads and two moms..I am down to one step mother and she is about ready to go..I was told that I  have an illness.,and It will do me in...I have a gronw son who lives with me, but he is autistic...he has the mind of a little kid...so I can't talk to him, he doesn't like to talk .he will go for weeks and not say a word..people don't believe me when I tell them that/...I never seen anyone like him.I am so worried about what is going to happen to him..he gets on Facebook and tries to be like other people ,,,all that gangster tough guy stuff. but the truth is...he has the mind of a 15 or 16 old..I have had a couple of major head injuries... long stories. violence and I have pstd from them...I  have hyperarousal..every little noise. I jump, and I have bouts of tourretts...I start yelling the word hey and I can't stop..I am so embarrassed by my situation..that I have taken to self medicating with alcohol...l was taught..I wrote trained in memory. help when I was in the va hosp. I can remember the some obscure news story from 20 years ago ..but not what I did 20 minutes ago or even yesterday for that matter...I drives me nuts.mt neighbor got me all bent out of shape, with the Government conspriacy crap...and it has been  all I could think about..now i get scared of my own gov.. my neigbor moved..thank god she aggravated me to on end am I so tired of trying to be to be a tough guy  ..and hold everything in...so last night and today.?>..i am going nuts typing....typing to no one...have a onesided conversation...whoever reads this just ignore me..I just ,talking to be talking....I can't concentraite for very long and when I read i get very sleepy..I can't stay awake for more than a few hours at a time.right now I have  a burst of energy...thanks to this web site for letting me have a place to just act crazy and vent. for a few minutes

[Nancy Thomas]

I hid at home where it's safe - pj's all day - never did that one before

[mary lutz]

Wow that is me too.

Who was that person who was up and out of the house with beds made and had a full life.

Now I am comfortable staying in pj's all day and little gets done-I really do not know how I came to believe that it doesnt matter-but that is how I really think now.

I still miss the life I had. I was a very grateful person. I miss feeling like part of the world. I just don't know how to begin to get that back or create something different.

[Nicolet Kuhn]

Hi Mary!  I am so sorry that you have had a bad experience with this website.  I just joined myself a few days ago.  My husband suffered a TBI almost 20 years ago and we are still living it!  I feel badly that your social circle has gotten smaller.  People just don't understand and they tend to look at a person and think if you can talk and walk; you must be okay...There ARE some of us out here that DO get it!  I am here if you ever need to talk.  I also have a facebook page that you can visit if you would like.  My name is Nikki Kuhn and I DO get it.  I'm not going to tell you it's going to get better because I really don't know and neither does anyone else.  I do know that the healing continues for as long as you are willing and have the energy to try.  Please, never give up.  That would mean that you are giving up on yourself, just like the lost friends and possibly family that used to be within your social circle and you are feeling the loneliness of that abandonment already.  I would like to give you a challenge....approach every day like you are the capable, beautiful person that you know yourself to be and show all those others that you may have been a little altered but, you are a force to be reckoned with and you CAN accomplish anything that you put your mind to!  Good Luck and if you reach out your hand beside you and clench, know I am right there beside of you, taking your hand and helping you to have the courage to move forward as beautiful you! - Nikki

[Debbie Gibbons]

Hi All - 

All this is me, too. Yes, I have had a few positive experiences in my continuing recovery, you think it is easier. I do not think it was easier. I chose a different way to heal and it did make a differnce. Yes, I still have huge issues. I used to give meds to patients, I could never do that again, I do not remember what I just did, i still lose everything I touch. So, I try not to think about what does not work and concentrate on what is working to improve. I was told at about one year after my head injury that the doctors did not want to give me speech therapy anymore because I would never get any better after a year. Now, I find out from a different doctor - that after a year of good rest, it is a good time to begin healing - so the real answer is nobody knows for sure. We can not trust what doctors say because they do not know or they totally disagree. What we need to do is tell the doctors what does work. In that way, we help each other and those who do not seem to have that amazing feeling of a huge improvement more days than not. So, we do what works, not what does not work. 

Ok, here are two things that helped me come out of the fog. I called it 270 days of the shock of living in a fog. So now it is almost three years and I still have no memory, but I have much better balance, walking and talking and sharing and caring. Yes, it is totally discouraging that I do not have many old friends, but if someone is so shallow and selfish, they cannot support a dear one in need, let them go. Find people that understand. Find yourself, even if that is a new person. I really am grateful I am alive, I feel like I left the earth and came back as someone else. Of course that is shocking, but it happened, so I have to accept what actually happened and I am still grateful my disability is not getting worse everyday, I am getting better everyday that I stay healthy. If I choose to do insane things, I will not get healthy again. 

sorry I got off course - One thing that helped was nutrition. I went to a nutritionist using muscle testing who prescribes healthy supplements, My brain had damage in the pineal (I think that is it, but it is near the pituitary gland) area and there is nutrition for this area. I also upped my B vitamins, i have to have small amounts of protein just to leave the house and can only stay away for two hours or get way too weak, but that is ok. I also have liver supplements because when the body works super hard to heal and has to get rid of old toxins and replace those old brain cells with new good neurons, we need a healthy liver. Ok, that makes sense. 

Another thing that helped was rest and exercise. Lots of rest, peaceful quiet by a fire or by a lake or by picture in books of things we love. I rented out my home because my friends disappeared and rented on a nice lake - made news friends and volunteered at a local library, putting books on shelves and re-learning my ABC's two hours, two days a week - a total of 4 hours a week. to me it was like doing a 40 hour week with overtime, but I did it. I actually forgot to go to work a number of times and sometimes was too weak to consider going, but I did the best I could and started slowly talking to people. In a place with 200 (winter) residents, I found out there were at least 10 more people who had brain injury also but they had never shared that with many people. That was only woman (i just did not talk to men) so that is 5-10% of the population that I got to know. I think that is a high number of brain injuries - all from people who usually do not talk about it. Some are people who had cancer 10-20 years ago and now have brain damage from kemo, sometimes it is a young person who was brought back after a drowning, but we all have very similar symptoms. I even talked to parents of a young man who never made it and thought, "if he just knew what to do" - he would have made it. That is why I care. I know we can help a lot of people and educate them and have the football and base ball players, not the owners, the players support us by wearing some sweet color like they paint trucks pink for cancer. 

So ideas - note here - let me know some positive thoughts and hear a story or two when you helped someone and what made you actually get better - then stay with it. Like for me, I have to have 2-4 big glasses of water to do anything, or to socialize, or to go to any event, I am not sure why, I just know that I get dehydrated easy and have ended up in the ER when I lose it and become unbalanced or weak, if I forget to drink water. Now I remember most times because it is so logical, I can get it. 

[mary lutz]

Thank you so much Nicolet. Welcome and I think you will find many caring people and much comfort here. I am sorry for your struggles of 20 years. Im sure that you and your husband have experienced many life changes as a result of injury. It is a challenge and am discouraged some days but also have days where I know that my purpose has just taken a detour and eventually it will be evident. Thank you for offer to talk. I am also here to listen if you would like to talk. I am sure you have many struggles as a caretaker and your husband is very lucky to have you. How is he doing? How did he get injured?

For me, the first year after injury was the hardest in many ways. I maintained a full life and responsibility but was frustrated a lot and my mood changed often as a result of personal struggles. That is much better now. I feel like a woman fell down and a 12 yr old got up. I received a lot of criticism because I did not know the extent of my injuries. Looking back, I remember getting excited and slurring my speech and my daughter asking me if I was drinking and I wasn't. I would sometimes just go blank and remember my supervisor asking me if I was ok in our meeting. Then I had a foot and facial twitch my sister would point out and start crying about because I didnt know why. (I didnt even know I had it until she pointed it out)

How a few kind words make all the difference. Thank you again and welcome to the forum.

Nicolet Kuhn said:

Hi Mary!  I am so sorry that you have had a bad experience with this website.  I just joined myself a few days ago.  My husband suffered a TBI almost 20 years ago and we are still living it!  I feel badly that your social circle has gotten smaller.  People just don't understand and they tend to look at a person and think if you can talk and walk; you must be okay...There ARE some of us out here that DO get it!  I am here if you ever need to talk.  I also have a facebook page that you can visit if you would like.  My name is Nikki Kuhn and I DO get it.  I'm not going to tell you it's going to get better because I really don't know and neither does anyone else.  I do know that the healing continues for as long as you are willing and have the energy to try.  Please, never give up.  That would mean that you are giving up on yourself, just like the lost friends and possibly family that used to be within your social circle and you are feeling the loneliness of that abandonment already.  I would like to give you a challenge....approach every day like you are the capable, beautiful person that you know yourself to be and show all those others that you may have been a little altered but, you are a force to be reckoned with and you CAN accomplish anything that you put your mind to!  Good Luck and if you reach out your hand beside you and clench, know I am right there beside of you, taking your hand and helping you to have the courage to move forward as beautiful you! - Nikki

[Joani Burtard]

Have you looked into the programs where pharmaceutical companies will help you pay for your meds?  I have heard and read about them, even looked into one because my doc thinks it would be worth trying a new med, but my ins. won't cover it.  We made too much money to qualify, but I did find out that these resources actually exist.  Good luck, and I'm sorry about your first lonesome month with no reply.  I have had that happen before, and it is very easy to take it personally.  Take care!  Joani
 
mary lutz said:

I am very happy for those of you who have met others in your area and have new friends that you can relate better to. And Debbie, you are very lucky for feeling euphoric.

I apologize in advance for being a "realist" rather than too optomistic. For some of us, the  tbi has other effects. It has left me with depression. It is no longer horrible and am able to manage it, but it is not something that one can snap out of. It has left me poor, often choosing between food and meds. , without a hope for future.

On the brighter side, it has slowed me down. It has allowed me to watch as many christmas movies as I want without feeling guilty for wasting time. I know can play a computer game or do soduko, and call it therapy. I know I cant save the world, so I can just do my part to be the best person I can be today.

[Nicolet Kuhn]

Debbie, I too am a spiritual person; direct from the heart and all the universe has to offer!  I have found it to be a great comfort throughout my husband's injury.  I also tend to throw a lot of gatherings so that we are not disconnected from the world.  My husband has no real want to have others in his life since his injury.  He said it is too difficult because they don't want to understand the real difficulties he faces and it is just too much work.  I feel it is important to keep contact with  the ones that do really care and so, I take the front lead on this.  This is the only reason we still have a social life of any sort. We were high school sweethearts and have been together for 33 years!  He was 30 years old when he got hurt.  My wish for you Debbie, is that you meet someone who is kind and understanding and that helps you to put warmth and love back into your life.  -Nikki-

Debbie Gibbons said:

I can't read the bible, but I can have my nice spiritual life, from my heart. You are right, every little bit helps thru the heart. 

Michael R said:

I ABSOLUTELY UNDERSTAND!.....My family and friends have have it easier to just write me off, than to try and understand or really care...I read the Bible .....it helps...you may not want to hear that,but it's a fact...I don't want to lay my life open to strangers...but believe me child..I have a lot of life experiances...you wouldn't believe me even if I told you about them ...Try the Bible, it's just a suggestion .

[Michael R]

Becca thank you for laughing....I just had to run off at the mouth...my friend's death, played on my mind...I just had to type....I appreciate no body judging me

[Angelee]

I am new to this website. I got on quite a while back and was scared to get on and even treind to un register. I finally have the courage to come on here today.  I had a car accident in 2005 and was in a coma for a month etc etc. I have a tbi and am on ssi. I live by myself with my cat and still get really lonely and don't trust people very well since the accident. I am just searching on my pc on facebook etc to see if I can end up finding some freinds to have that are local. Can anyone help us with this problem of isolation, please do! Finding freinds locally is a really big need in this kind of community!

[Scott P. Cole]

Hi Angelee-

If you are in a more populour area, seek out your local branch of the Brain Injury Association of America.  There is MUCH available online, which I will list below.  Take a look at Brain Injury Radio -- these shows are excellent, hosted by some find brain injury survivors.  Here is the link to this month's show:

http://www.linkedin.com/news?viewArticle=&articleID=986521278&a...

The website is www.braininjuryradio.com.

Also:

http://tbisurvivorsnetwork.ning.com/profiles/blog/list

https://www.facebook.com/joseph.martin1?ref=ts (Joe Martin runs two excellent online groups)

http://supportforbraininjuries.wordpress.com/

http://livingwellwithtbi.blog.com/

Good luck!

Scott

 

 

 
Angelee said:

I am new to this website. I got on quite a while back and was scared to get on and even treind to un register. I finally have the courage to come on here today.  I had a car accident in 2005 and was in a coma for a month etc etc. I have a tbi and am on ssi. I live by myself with my cat and still get really lonely and don't trust people very well since the accident. I am just searching on my pc on facebook etc to see if I can end up finding some freinds to have that are local. Can anyone help us with this problem of isolation, please do! Finding freinds locally is a really big need in this kind of community!

[Brenda Bell]

We usually hide and try to survive in our isolation pondering, what if? Sometimes we are afraid to expose ourselves, so very risky. It's so easy to be in isolation. I think we must move forward with confidence and trusting the strength we need and be alert to the needs of others. I have to agree with Marih Alyn - Claire that it is the time to get out of yourself and reach out to those who really need you around to inspire them, to encourage them. To me it feels so right about right now to inspire others and believe that each day is a new beginning. We are overcomers, unstoppable and capable. Surely we can live fearlessly. MERRY CHRISTMAS TO ALL!!