expressing how you feel

[donnamarie]

Does anyone have problems with this i have always been ok with this but since my bleed i can’t even explain myself to anyone (not even me) the harder i try the worse i make it. Is it just because we don’t want to hurt the people close or sometimes i think we are just pushing them away further any help appreciated

[sallym25]

Hi Donna,

Yes, I have a real problem with this too. Iam really annoyed that I cant find the words to explain it to others. . How can I possibly explain something I dont understand myself? I have spent hours trying to analyse my feelings and have had no success with it at all. As you say, I also wonder if I am just making life more difficult for those closest to me. I think I may have just lost all interest in life in general. Can't be bothered to go out and socialise and yet, I get frustrated being stuck at home. I do go to work, but in reality I just go through the motions like a zombie and don't really take anything in. More of an existence than a life at the moment. I don't really know what I want any more.

Hopefully someone will come onlater and explain it for us!

Take care

Sally xx

[Gill C]

I so totally have a problem with this, especially when I feel low but don't know why! I am always so grateful to be alive & that never changes but some days I feel low. I have felt really low the last few days as I approach my anniversary which I can't explain at all. I think part of it is the huge change that has happened in my life in the last year which I don't regret but it's still a change - does that make any sense at all???

[tracy]

Hi Guys

totally relate to this subject.

Bagpuss, funny you say youve been a bit low these last few days so have i. Your at a year and so will i be in a few weeks. Like you say im happy i survived but some days i feel like lifes not worth living. I know that sounds bad but its true, not sure what happens as most days im happy trying to live a different life from last year. I thought it might be to do with hormones or something. Ive sort of given up trying to tell others how it feels as i dont think they will fully understand unless theyve been through it.

As You say Sally im just going through the motions of daily life because i have to. some days i just dont have the will to do anything constructive. I dont trust myself anymore when out as i forget what im saying or even why im there.

We need linlin she puts everything in perspective.

Traci S xx

[Louise]

Oh yes! when I was in rehab I saw a phycologist - great easier to talk explain to her, then real people nope, still have that even now.....

On saying that dont push them away hun, I did and SO regreat that so advice would be talk even it you find it hard, or type it in letter form sometimes its far better writing something down: How I feel now. What I think I've lost. I had to do that in rehab sometimes its good to keep these and see how things have changed.....

[Sandi K]

Yes Donna, and it's even harder when people finish my sentences for me. Im too tired or confused to correct them. Sometimes it takes so much thought to explain something and then I talk slowly to choose my words carefully and then some people can't wait and think they are helping by finishing my sentences. By then my head is done and I usually just end up nodding.

This was especially bad when I returned to work too early. It was just easier to go along with what others thought I was trying to say. I think it's easier for me to express myself when I'm feeling rested and well. If we have little energy to invest in the thought process it's really hard to come up with the right words.

Sandi K.

[FionaH]

I keep writing as I sometimes work out how I feel doing that but I struggle too. I try to keep a sense of perspective but it is hard to answer honestly when people say 'how are you?' without feeling like a moaner.

The flip side of that is many people think I am 'fixed' or 'fine' because I keep trying to get on with it! And anyway it is just hard to explain to someone who hasn't experienced an SAH what it's like anyway.

I am finding I am having more low days at the moment. I am nearly 4 months post SAH and I guess a lot of stuffs just sinking in now. All told I may choose not to be totally honest with other people about how I feel but I am always honest with myself.

[goldfish.girl]

The best advice I have been given is to write a DNS letter (DNS = DO NOT SEND). You can say everything you feel, vent all your anger at the people who have hurt you or those who just do not understand. Put it away somewhere safe and, if you are still raging with people after you have let your anger out (in the DNS letter) read it again, and moderate what you want to say (or re-write) in a more positive way.

I have found that it really does help but you may have to accept that the person you have aimed it at may not react well to it (hence the Do Not Send - you let it all out then have time to think how that person will react). Sometimes, you know that they will not accept it well but that helps you understand which friends are there for certain things and which ones are there for other things (and, yep, the ones who maybe won't be there at all)

Michelle xx

[Lin-lin]

SAH should come with a Brain Injury Manual. Garages provide us with a manual when we buy a new car, but when we acquire our new brains after the SAH, we leave hospital without a clue about how the thing works.

At the beginning, I used to apologise for my behaviour. I apologised to people when I was tired. I apologised for not being able to attend an event. I was ashamed that I could not return to my former job. I felt guilty when I could not meet friends.

I have since stopped apologising. I have a brain which works a bit differently to the old one; that is all. My brain still works, but it has new settings.

When my boyfriend and parents started to understand the medical side of a brain injury, I had less to explain. They are learning with me.

In terms of explaining it to other people, it rather depends who the person is. If I feel that the person will not grasp the situation, I just say I am feeling better but hope to make further improvements.

To others whom I feel may understand, I say I am working through a few things at the moment. I explain that the SAH has left a permanent brain injury and I am adjusting to a different life. I say that the adjustment is difficult but I work very hard to improve and I can sometimes feel positive about the changes.

A few people in this thread have commented that they are ‘going through the motions.’

I know what you mean. I do not get excited about things like I used to. I observe others enjoying themselves, but I cannot seem to connect with them.

I initially though it was depression. But I do not feel depressed at present, but I still seem to lack that sparkle and fizz.

I learnt at Headway that this is common amongst people with a brain injury. Emotion is the result of neural messages being passed between emotional centres in the brain. When the pathways have been disrupted, emotions are not registered in the same way. Emotions can be less intense but we can feel other emotions more so, hence the crying at a drop of a hat.

I find that I cannot get excited about nights out or social gatherings like I did before. I tend to ‘show my face’ to be polite, but leave early. If the event is going from bar to bar in town; I simply do not go at all.

My boyfriend and I compromise. I encourage him to go to some events without me; and because he knows the reason why I don’t wish to accompany him, I receive no pressure. He does not say I should push myself to be more sociable because he understands the medical reason behind my decision. He is aware that people with brain injuries cannot filter out distractions. Hence very busy environments are tiring and can make me feel a bit nervy. The brain is processing ‘too much information.’

So in a nutshell how do we explain to those around us how we feel? Well, we don’t have to. Direct them to books and online articles on brain injuries and let the medics and academics who wrote the articles do the groundwork for you. Explain that you are learning about the new you and you would like the support of a few people along the way.

[FionaH]

Stopping apologising is something I am going to do from today Lin.

I haven't admitted to anyone I can't remember when my brothers birthday is, I just know its next week. I got a bit of snipping from a friend for trying to organise a girls day out and not remembering it is the day before her birthday (hey it wasn't on her birthday right?) and I felt really awful and spent all weekend beating myself up. I am always sorry I am tired, sorry I can't go out/go to the cinema/to a bar. But you are right I have got a brain injury and I don't function the same way anymore.

I find it really interesting what you said about not feeling the excitement. I haven't cried since my SAH, a couple of times there has been a few tears but I haven't properly cried at all. Has anyone else experienced this.

[Gill C]

LIn you as always have hit the nail on the head & I think I understand why nathan winds me up so much cos I know I'm sorry I can't be a better 'normal' mum! I too feel like apologising for the way I am which is why I feel slightly low the last few days, I'm a year on & feel like I SHOULD be better & in some ways that other people think I should be better too!! I am so sick of saying I'm tired every time someone asks me how I am so I do feel sorry for being tired & unable to do things

I shall stop feeling sorry that I can't do things now too

[tracy]

Lin

I told everyone you would make sense of this subject, and you did it again. When i read your posts i get my husband and children to read them too, as you seem to put into words what i want to say. How far along from SAH are you now?. I hope i gain understanding when i get to that point.

Traci S xx

[winter]

Powerful and helpful thread going here!!! Great posts from everyone

I'm still having trouble explaining things and have experienced the same frustration as many of you.

Interestingly, I am always apologizing too! My daughter told me the other not I don't need to apologize for anything. I then said, "Oh, I'm sorry!" So no more of that for me either!!!

I've found that people who are truly caring and can empathise, are patient with me and do listen. The ones that I have trouble with are the people who have no clue and don't really care to learn about brain injuries. They just want me to be the "old" me and move on. Unfortunately, it's made more difficult for us if one of those people is a family member or someone we thought was a friend - harder because of our emotional ties with them. When I'm tired or stressed out, it is almost impossible to express myself, especially to ones who just don't get it.

I love the DNS letter. I did this with my son (he's quite thick headed!) and it did help a bit for a while. I felt better expressing myself through writing and he understood a little more.

I think where we are in our recoveries and whether we're experiencing other health issues, also makes a difference as to our abilities to expess ourselves. When we feel heard and our feelings are validated, we feel better about life in general - at least I do. I think this goes along with having a good support system at home, work, with friends. If I'm lacking that support system, it leads to low times and depression. Many times I feel I'm just existing and I hate it. I'm hoping after my neuropsych appt., I'll be referred for some counseling - looking forward to that!

[Bill B]

Hi everyone,

you are all very perceptive about your feelings and I have been watching this thread with great interest. Talking about my feelings is a new experience for me but I feel I can add something . Six years on from my SAH, I still forget birthdays and anniversaries but no longer feel the need to apologize. I sent my entire extended family and friends a Christmas card, a year after my SAH, and explained to them all (on the card) that my memory was impaired and that I meant no insult by forgetting any important dates. I received replies from almost all of them with messages of understanding. So now, if I forget something, which I still do, I don't feel guilty.

Some of the replies said "Why don't you write things down?" Well , I do, but most of the things I write down are about work, or day- to- day things and I don't have enough spare for everything. Both my children berate me for asking them repeat questions but my wife just leaves post-it notes on the bath room door or on the kettle and this works just fine. At work, my colleagues (who are a great support) leave notes stuck to my P.C. screen because they know I will forget to read my E-mail. It works! Bill x

[KelBel]

This is a great thread!

I do also have some difficulty explaining how I feel, even to Doctors too and ended up being laughed at the other week as I had not explained myself clearly to my GP...still a bit annoyed about it really...

I try to remember not to say how tired I get if someone asks how I am, as I always get told that 'everyone gets tired'...

I find that I do tend to remember birthdays etc, and buy the cards, and then forget to send them on time! I have done a lot of that lately...

I do like the idea of the DNS letter(s). I might have to try that for a few people!

Kel x

[kukashika]

Hi everyone. I've read all the comments in this thread and the main thrust seems to be that we all feel a sense of guilt.Guilt that we are no longer the person we were and also to some degree depression because we have difficulty dealing with other peoples perception of who we have become. It's 10 years since my SAH and I have accepted that I am not who I used to be. Maybe I'm fortunate because I have lost all my memories prior to my SAH. therefore I have no past. No childhood, no wedding, no sons childhood, nothing. Anything prior to 2001 has gone.BUT it has advantages because without the memories there is no guilt, no regrets, no sadness.I still have side effects from my SAH some nights I have to go to bed at 7 oclock because I am exhausted and feel that I could just lie down on the floor and go to sleep. I have migranesque type visual disturbances - aura without headache on a regular basis and I still have severe headaches.BUT although I no longer teach I do own a B&B and I also have a cleaning business so my life has not ended. My point is this - we have all changed and it is not our fault so we shouldn't feel apologetic or depressed about something that was outside our control. If family or friends are struggling to cope with the changed us then that is their problem. It's not our fault. Don't feel guilty for your SAH. If it has changed you and you are aware of the changes try to accept and embrace the different you, Consider it a challenge. My brain may have suffered a trauma but I still feel the same person I was before the SAH. Please dont allow yourselves to become a victim. Life is too short and everyone on this site should be grateful that they are functioning well enough to even post on here.The majority of the poor souls I encountered in Newcastle General in my 3 weeks there were either severely disabled or dead. Just be thankful you're able to read and understand this post even if you do feel anxious,depressed,headachy or just plain scared.You need to be alive to feel all those emotions!!!!

Kel !I also have a load of Christmas cards that I have written and have forgotten to send. Some of my rellies haven't had a card since 2003

It's just an occupational hazard but it certainly saves money!

[JazzyDog]

I find I am either flat ( I seem to care less about a lot) or I am crying at the drop of a hat. The crying jags are much less frequent now at 22 months after, but I allow them to come - it's more therapeutic for me than holding in my grief at what has been "lost". My mom helped me see the flat as a bit of a positive - she says I no longer sweat the small stuff.

I haven't been depressed. I had a doctor in hospital who kept asking me if I was depressed until I asked him to stop saying that because he was depressing me! It worked out well as he stopped coming in to see me and the new doctor is now my regular doctor.

I am Canadian so apparently we say sorry a lot anyway. I do know I apologize for being slow/tired/cranky or frustrated a lot and my husband tells me I have nothing to apologize for, but I am more often short with my son and that I do apologize for and need to!

[Louise]

Hi there

Just thought I’d say that I don’t feel guilty at all thatI am no longer the person I once was.....it wasn’t my fault & I so agreethat if people stuggle to accept me for me that’s there fault not mine, (&to an extent their loss)

I don’t remember anything either from my past like you Nochildhood, No wedding my only memories are in pictures though even that is notalways so I look at some and say that’s me ok but I don’t remember the time orplace...on saying that I don’t find it an advantage It frustrates me at timesthat I don’t have a past/memories I’m sad but not unhappy....if that makes sense...

[Winb143]

I always had a good memory before SAH... not so much now....but I am so glad to be here.....ok forgot the Rolling Stones name the other day...but remembered the drummer Charlie Watts remembered Mick Jagger and Keith Richards but couldn't remember Brian Jones who died...My husband went "Oh you cant remember the name of the group"...lol...Never liked them that much shhh my dont let my hubby know....

I Prefer Chas n Dave anyway, I have no taste in music ..So cheer up Louise or I'll sing to you !!! lol

It doesn't matter if we forget things , birthdays or names etc. . People who matter to us will understand . We are soooooooo Special as we are still alive and so remember to keep smiling...and be happy....when I had shunt fitted I remember saying "My name is Win, My Hubby is Al..My daughter is Sa and said my parents names and so on...so Rolling yobo's....I couldnt remember big deal !!! walks away head held high..singing a Chas and Dave song outta key as usual (skirt tucked in knickers and thinking I look the bees knees )....Happy Sunday and happy week to come !!!

Regards

WinB143 x

Edited June 12, 2011 by Winb143

[Bill B]

Hi all,

I have a technique for remembering names, (usually at the pub quiz).

I fix the picture in my mind the send my little inner Librarian off down my memory shelves, working my way through the alphabet, until a name rings a bell. My fellow quiz- team members smile as I go into a trance- like state, but they are grateful when I suddenly announce the answer, ( usually in the middle of another question).

Just like Win 143, I have trouble remembering some things, post SAH, that were not a problem before. One name that caught me out recently was Johnny Cash, I could not for the life of me, remember his name, even though I'm a great fan. I found myself saying things like "walk the line" and "man in black" and "San Quentin"..... anything that was connected to the missing name, until the name just arrived back in my memory.It doesn't always work but it's just another tool in the recovery box.

All the best,

Bill. x

[Winb143]

Bill,

I was playing for time hence the names of the Rolling Stone s drummer etc but the the name of the

group I new I should have known it but I couldn't remember... arrrggggggghh

Keep well Bill and smile ...hmm now what was I going to do next ,...Joking..honestly !!!!

Regards

WinB143 x

[Bill B]

Hi WinB143,

So far today I've washed my smelly dog, cleaned the bathroom and hoovered the front room, but have just remembered the one thing my wife asked me to do before she left this morning to visit her Mum. Peel the spuds!

She'll be back in a bit so I'd better crack on. She should have left me a note.

Can't help thinking there's something else I should have done, but she will tell me what it is when she gets back. Must crack on , I've got a bathroom to clean!

Bill. x

[Sandi K]

Bill, I can relate to that!!

I've been so bad at remembering over the last couple of weeks that Peter has placed stickee note pads and pens all over the house. Trouble is, I write it down but then forget the note pad in the bedroom so forget that I wrote it down!

Sandi K.

[Winb143]

Hi Sandi and Bill (again!)

Hmmmm Bill did your wife say ermmm put the oven on or bleach toilet ?????...naaaa I doubt it.......the oven might not fit you..ohhhh WinB what a bad joke.....hmmm sending Bill our Dogs

Sandi what have you forgotten now !!!! let me think (think? that;s a joke in its self lol)

Happy Sunday hope you both remember what you forgot

Regards

WinB 143 x