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why have I lost......I'm angry


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I hope this makes sense......

I've had a strange day today, I should be appreciative that I'm still here but I feel like I've lost. I treat this condition with humour but I'm fed up of being the butt of all the jokes. As any of us knows memory is not our finest skill now and I truly am no exception to this rule but what started out as a private humour is now open to all and it gets a little soul destroying listening to everyone having a good old laugh at my expense.

I also suffer with balance issues, I know I do so why do people feel the need to rib me about something I have no control over. Do they not realise that there is a person attached to this latest bit of cheap entertainment and I don't wobble for fun. Before this happened people spoke to me and I felt my opinion was valued where as now they talk at me or worse over me. I feel on days like today that I'm treated like an idiot who can't hear, can't read, can't think, can't converse but most importantly can't hold my own when I know I can.

I feel on days like today that I have ...........lost!

Edited by penny
Paragraphs/line spacing inserted for easier reading
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Hi,

Please don't feel lost. After mine happened I was so sensitive to everything. I felt so bad all of time I could not find any humor in what happened. I've eased up a bit now and the other day at work a guy was telling me about his high blood pressure and weight gain and I laughed and said, "you'll have to do better than that when talking to me, I had a brain hemorrhage and almost died."

On flip side, I think most do not know what to say or how to react to what happened to us so the typical alternative is to make lite of it and joke. Trying to somehow see a positive in this nightmare we survived. It's not funny, it's hard so tell them it's hard. You have a right to be sensitive and if it hurts your feelings tell them.

I had a melt down a couple weeks ago because I felt bad and kept dropping stuff and fogetting things, etc...

So, you are not going to ever walk a tightrope and you will have to start writing things down to remember and you will have your meltdowns from time-to-time. So what. You EARNED it.

Smile.

Iola

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It can be very difficult to cope with other people's responses. To begin with, it drove me nuts - people telling me that they have memory problems or feel tired too. On my nicer days, I think that others were just trying to help but in a very clumsy way. I'm 3 months away from the 3 year mark now and it does get better. Over time, the comments stop anyway and you will feel stronger and more able to cope.

As for feeling like you 'should' appreciate still being here, that comes with time. It takes a while to get used to the differences in yourself - your abilities and energy levels are likely to have changed. Perhaps even some aspects of your personality or likes and dislikes. In the early days, I felt like I'd been body-snatched. I looked like me, but I didn't feel like me.

I hope you feel better today x

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Aha, I know this feeling very well. I can only tell you what I have done a little further down the line from you.

I blog about how I feel and how hard it is somedays and encourage friends and family to read is; it lets me say stuff I wouldn't tell them face to face but so they get how each day is still a very huge effort on my part. I have also explained to my daughters that when they laugh when I mess up words, or can't find words or stumble that funny whilst that might be actually it's very frustrating for me and I need them to understand that I need a little more time and not to be rushed or giggled at.

I don't worry about what people outside the family and friends think but that's just me, I do what I need to get through my day and cope so I'm much better at asking for help these days or saying if I need something. Most people want to help but how do they know if we don't ask. Just the other week I went to an appointment and they had music playing really loud and I just straight away asked them to turn it off and explained why, we then had a lovely chat and it was much more pleasant.

My ego and I have had a fun dance this last two years as I try to adjust to the loss of some of the things I took for granted and the shift in how well I can do other things, that's been a bitter pill on top of all the physical things and recovery but I really think talking to someone is key, we have to face it. Humour can be a powerful thing somedays; when I fell over and landed in a ditch on one of my first dog walks we all just laughed because it was that or cry but somedays I also just cry because my ego wants to do more and my body and brain won't let me, but I'm learning that there's no competition or race to be won here , the joy is in the day to day moments and you will regain your confidence in yourself with time.

Take it easy mum of five, don't rush it, if they are making to much of a joke then tell them, ' look I know I laughed about this at first but I actually find it really hard right now so please don't make fun of me as my confidence is a bit low right now so be a bit gentle please'

Take care

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I'm with dawn on this. I have given up telling people I am tired all the time. I haven't seen the girls for weeks, we normally meet every Tuesday, and there is one particular person there that just doesn't get fatigue.I've been told she knows what tiredness is cos she has 3 kids!!! I've given up saying I'm too tired to meet up with them, that my head feels tight and my eyes and bones hurt.

I have much better balance these days but when I'm tired it's worse. I'm 4 year on (almost 4 years post op) so the wobbles are much fewer.I feel your pain, people just don't know how raw you are still feeling and they are probably using humour as they don't really know how to talk to you. Again I've learnt to let it go over my head but that is something that comes with time. Acceptance is a long road but you will get there.

In the meantime can someone you can really talk to have words with the people who are 'making fun' of you and your situation? Please don't suffer in silence.

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I know this is probably not the best way to react but when I have had enough of the fun taking or the memory remarks I blow and say a few home truths. If I happen to be having a bad day I blow very quickly.

As a rule it makes the perpetrator feel ashamed and a sheepish apology follows. I just hope that in the future it will make the people who make these seemingly innocuous remarks that they think are funny think twice before opening their mouths.

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Awake-ish again! How I understand the way you're feeling - I remember well going through that stage - and it is a stage - you will move on. Iola's right - if people are saying hurtful things, you must tell them. If you had broken your leg and had a big cast to advertise the fact, they wouldn't do it. Our problem is that we don't have anything visible that tells folk that our brains are injured - so tell them and ask that they stop saying the hurtful things.

Like you, I have the wobbles - still do and some days worse than others. I eventually found a really wonderful hydrotherapist who has not only helped with the balance issues but also with my self-confidence. She has helped me stand up (literally) and also to stand up for myself! I still see her every week and she has been and still is my salvation.

As for the appreciating that we're still here - that takes time - lots of it. I remember the first time I saw my GP after the event and he looked at the notes from the hospital and said "You're lucky to be alive". I was incredulous - first because no-one in hospital had ever explained what had happened (they told my husband things but not me - why do they treat us patients as such idiots?) and second because at that time, I didn't feel lucky at all - just bewildered.

Things will get better - I'm at about the same stage as Dawn now, nearly three years on, and can look back and remember those awful angry and bereft feelings. Occasionally, I still have them - but mostly I've reached peace with myself as I am now - changed (doing a tango is out of the question!) - but still a human bean!

Good luck on your journey and come back here whenever you need to vent your feelings or need advice - no-one here will laugh at you - only with you.

Love

Victoria

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To All of Us,

I have had the mickey taken out of me behind my back.

I have told the person to laugh with me not at me, all they did was raise their voices, so I put

my hand up to their face and told them "I must not have stress and noise so shut it"

I really want to get out of wheelchair and punch them but they are not worth my anger.

All I can say is try not to let them get to you, and keep out of there company as we all need

happy times, so blow those who try and hurt you and keep smiling xx

A song helps xx

All the Best BTG'ers xxxx

WinB143

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Thank you to everyone who has passed on their valuable experience, I'd had a really good week til this so maybe the scale of the fall was my undoing rather than the comments or perhaps I just need to do a bit of spring cleaning in my friends closet.

I think ( too much sometimes ) that as human beings we go with the flow and if we hear humour over a certain situation we automatically assume that we to can join in when in reality it's simply private humour and as such nothing to do with us. I was and still am smarting a bit from it but I'm a thick skinned old boot and on the plus side with the dire short term memory issues I'll have forgotten all about it by tomorrow.

Today I have been to the beach which is just up the road, smelt the fresh sea air, felt the warm sun on my face, held my husband's hand, talked, walked and laughed. Yes its a bad day as the painkillers aren't stopping the party in my head and I've walked more miles than my husband as I'm seriously wobbly today, it's taken me ages to get my words out and I couldnt think straight if my life depended on it BUT it was a day of feeling alive. If tomorrow comes and I feel no better then so be it because one day I will feel better and it will be thanks in part to everyone on BTG, you really know how to pick a girl up when she's so low she's in danger of cleaning the floor with her nose so thank you.

Anita x

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  • 2 weeks later...

It used to hurt my feeling so much that I'd just cry.  I was very emotionally volatile.  At any rate, people stop making fun of you really fast if you cry, that's for sure :)

 

Now, I am more emotionally appropriate with my expressions and also with realizing people are just muddling through life like me, so there are no hard feelings.  Actually, I can come up with a few things more spontaneously to add to the hilarity of their comments like, 'and you know what else, I also do _____________!'  fill in the blank with whatever has been crazy lately.

 

~Kris

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