I know I don't post often but when I do get involved I don't get many responses which makes me not want to post and join in and it makes me feel more depressed than I already have to deal with.
I thought I would feel ... ummm .... I don't know how to finish that sentence
Im not very social as it is but I try both online and in real time and both give me the same negative feed back of not being interested in me, I understand that people are busy and stuff but I always have to put in the effort and that isn't right, if I don't then I not talk to anyone for days/weeks on end beside in work.
I will just go back into my own little world and curl up in ball and become invisible again ..
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bexx87
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Oh no, I always read your posts but, like other people, my situation is very different to yours so have nothing useful to say. You are a very valued member of this forum, we'd miss you.
Goodness me.....I can understand why you might feel that way, but I have a feeling it's more to do with everybody being in different parts of recovery/not reading Headway posts on line at certain times of day etc. When you open the app on a phone or tablet, it shows you just the two or three most recent posts Nd you have to scroll down to read more. If I have time I do scroll down and read all the recent posts but not always if time is limited, or if there's loads of new posts that day.
I'd be a good example - my life has gone haywire in a big way since the beginning of the year. If I thought things were bad after the accident - I had no idea it could get any worse. So I'm afraid I've been in a bit of a self imposed bubble And I haven't been visiting Headway forum or posting anything for ages. I've only popped in here and three on odd occasions. I understand how you feel about maybe feeling that your isolated or cut off from people? It's a minefield isn't it? I've noticed people behaving that way to me since I've had my brain injury. It's like they're interested for a minute and then they don't seem to want to chat all of a sudden. Isn't it all just hard to get used to? You feel like you're progressing and you've maybe come quite a long way and achieved a lot, and then you think - well why isn't it all ok?
Well I'm a reader of your posts when I'm on here, and I'm amazed at how you actually do such an exacting job. Remember to give yourself credit for all that you achieve. I'm trying to go back to work and struggling, but part of why I thought I could in the first place was because I used to read your posts last year and I thought it must be possible. You're inspiring people when you write your posts even if you don't get a reply. So keep on posting. I feel sure the lack of responses is cos it's just the way posts are displayed if you're using a tablet device or phone to view the site.
Take care Bex. I've been told the road to recovery is peaks and troughs.....and I'm starting to agree. Good luck finding your mri by the way.....did they send it on a CD? If you've lost it you can order another copy but I think there's a charge.....so I hope you find it. x
Im osrry to hear what you've been though, thank you for your kind words, they sent it via email so I still have the original email which I have sent it to them, I have a mind to go to the centre that I had the scan (bristol.ac.uk/cricbristol/) and asking how long they keep the records.
Im determined to get the full copy come hell or high water and once I get a bee in my bonnet I don't get off the war path until I have the result Im after.
I see topics people post and I want to read them but if its too long I find its too much information and I cant process it
It might be worth giving them a ring......people must make enquiries all the time about this sort of thing. Take care and good luck with your search.
I think after a head injury we are super-sensitive. I have to ignore my feelings a lot of the time and find ways of coping with the general unhappiness of the world being so confusing!!! Nowadays I am busy with my son but before him I was in a pretty dark place mentally a lot of the time. Keep yourself busy and surround yourself with nice things. Do something nice at least once a day- a small thing like eat something nice or listen to a nice piece of music or read something nice
I have to agree with Aqua it is so easy to take things to heart and get the wrong idea.
The beauty of this forum is you can wander in and out as you are able or cocumstances dictate.
This may seem like people are suddenly ignoring you but I feel it is not. They are just busy dealing with their life. Or have forgotten to answer or maybe think they have answered you.
Try not to get caught up with theses feelings , it is hard I know.
Remember everyone is valuable on here as we all have different experiences to share.
The reason why I don't come on often and read posts that I do want to join in with is because for some reason this forum (facebook and other forum don't have this effect) makes me really tired, I have joined in on a few posts today and feel mentally exhaustedly
Hi again bexx87! I concur with many of the responses above. I am in bed on oxygen most of the time so pretty much always around and online so happy to chat. My ridiculous fatigue which meant I had to give up my job took them a decade to fathom as the neurologist was useless! A new GP listened to what I was saying and referred me to a Respiratory Consultant who simply put me on a small blood oxygen monitoring machine for 24 hours and found that I did not breath enough. Apparently trauma to the pons/medulla area of the brain which controls breathing can lead to this version of 'Ondine's Curse'... Now I have an oxygen machine and nasal canula and don't need to sleep during the day. Worth a check if overwhelming need to sleep is a feature years after the injury (it is normal for the healing phase of course).
I don't post or comment a lot of the time but that is because I am more of a busier person than I was.
Like you were saying though, I wonder myself if people like me as a person as well at times too. It's mostly with people offline, some people at my Headway group. They are nice people but it seems, to me, as if they don't want to talk to me sometimes or maybe they don't know what to talk about to me or maybe it is just me who is looking too far into things.
For about six years I didn't do a lot with myself at all and this is where I lost a lot of confidence, motivation and was very antisocial. Now I am at Headway, they have helped raise that and I am more of a social person now. I still can be quiet a lot of the time and I mostly speak when I am spoken too. I am not good at starting conversation a lot of the time.
I completely understand what you mean about puting in the effort though because during those six years of isolation, I did chat in chat rooms a lot and I also have an account on facebook too. During school, when I was a teen, is where most of my operations took place and so I was in and out of school, nack and fourth like a fiddler's elbow I tell ya :). Anyhow, I had "friends" at school who had my back but after school is where I found a lot of those "friends" practically kicked me to the curb.
I found some of these friends on facebook and added them to my list. Some people pretended they didn't know me but were obviously lying. I don't know what it was but they were not the same kind of people I knew back in school. Facebook had really changed them or they just developed into a right ****. They never bothered to contact me, it would always be me that had to contact them.
I've even experienced it with some volunteers from my Headway. When I knew them as volunteers, these people were lovely people but as soon as they left and I only spoke to them on facebook, that's when they change.
I realise they may be busy people but that also means that those "friends" from school are now busy people too. I'm pretty sure thet they can fit in a few moments just to say "Hi, how are you?". They do with their other thousands of acquaintances... i mean, friends :).
I think sometimes curling up into a ball and maybe talking to yourself is the best way sometimes, at least then you'll get a response... That's usually how it works with me anyhow :).
I don't work, never have had a paid job before, but the closest thing to work for me is the volunteering I do with my Headway on Friday mornings.
I don't speak to a lot of people from my Headway outside of Headway but a few here and there. Some I might speak to occasionally on facebook and I do see/speak to some people on the street but I am quite a quiet person really, a little like my parents can be.
I said I was quiet as in not greatly social but I am also quiet when it comes to not doing a lot of... well what most others might do. Go on holidays, go to pubs, discos and so on.
It kind of annoys me in some ways when I see my headway friends hugging each other and making plans in front of me to go on holidays or meet up at the pub and stuff and I find it difficult to do these sorts of things.
I think I can be a bit of a fart arse really and I have had a slightly different upbringing than most people... especially when half of my headway friends are middle aged and most of my ops took place when I was a kid. In some areas I feel like I don't completely fit in.
I've found attending a head injury group near me has helped a lot ( not headway) It's a charity set up by a bloke who had head injury 5 years back and honestly it's the best thing I've done since my BI everyone is so friendly and the 2 who run it are so friendly and welcoming. Both will do stuff outside like meet people for activities you enjoy. For the first time I feel comfortable making conversation and having a joke with them. So I'd say if possible get going to some group to meet people as you feel more connection to people you meet and spend time with rather than reading words they type on here. Not saying there's anything wrong with posting on here just that you don't get same connection to people on here like friendship or social aspect.
So true! And yes it's very difficult to connect with people in general. Actually more difficult 20 years after my coma/head injury, I am more concerned about how I am coming across these days but before I didn't give a toss. I also didn't care about much at all but now I have a son so I am determined to improve my lot in this life.
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And I haven't been visiting Headway forum or posting anything for ages. I've only popped in here and three on odd occasions. I understand how you feel about maybe feeling that your isolated or cut off from people? It's a minefield isn't it? I've noticed people behaving that way to me since I've had my brain injury. It's like they're interested for a minute and then they don't seem to want to chat all of a sudden. Isn't it all just hard to get used to? You feel like you're progressing and you've maybe come quite a long way and achieved a lot, and then you think - well why isn't it all ok? 
I feel like two people 
New. Lost. 
how do people cope
