will i ever be me again ??????????

[burtongal]

hello all i hope you are as well as possible ,ive not been on in a while as been a bit low , im soooo fed up of feeling tired i have been out to my local town a few times in the last few weeks it was ok bit tiring not body wise head wise i found the noises the people the shopping the puttin on a happy face so tiring , will it ever end , then 10 days ago i had a argument with my sister who i thought was understanding about what i am going threw and how i am feeling but i now know she thinks i should be pushing myself more get out more etc , i tried explaining how i was feeling but she said in a nasty tone omg get over it it happened ages ago and all you have to do now is pop a few pills your daughter has a cold but you dont care do you . oh my as you can imagine i was very upset i have not spoke to her since , she made me doubt myself am i normal in how i feel fatigue wise am i wrong in feeling depressed am i wrong in sleeping too much my life is so weird at the moment and then having no support from family i do sometimes have dark thoughts , just wondered if anyone else had problems with family and friends supporting and understanding what they are going threw , thank you for reading this , sorry for going on and on lol just needed to vent a bit xxx

[paxo05]

Hi there.

I'm afraid it can be a common problem. My bi was 20 years ago and certain parts of my family can't see why I am " not over it" yet.

As for being you again...Well you already are you...Just a different one. It is hard getting your head around it at times but everyone changes over the years it's just a bi causes a more rapid change.

How to deal with it? Well you could try and be more like your former self. Put on an act and hope it makes family members happy.

Sounds strange but I tried it....It's exhausting and very frustrating. Or try and accept the NEW YOU and hope others do to. If they don't well that's their problem. Sounds harsh but if you ate like me I have all on getting on with my own life to worry about others opinion of how I should be.

This may seem simple but trust me ts hard to accept how different you may have become.

Luckily for me my very immediate family accept me tantrums and all.

Life with a bi is tiring enough without constantly justifying how we have changed.

Hope this helps a little.

Oh one thing. Let your sister read the posts on here...It may be an eye opener for her...It's worth a try.

Pax.

[burtongal in reply to paxo05]

hi hun thank you for the reply ,im trying to accept the new me its hard but i think im doing ok recovery wise , i can only do so much then the fatigue and headaches start but my sister who by the way is a nurse and should no better thinks im faking it , its so nice coming on here to talk to others who have been /are in similar situation to me it makes me feel less alone ,i do not think i have changed too much i still have same sense of humour same thoughts on certain things the only thing i am different with is how i tire easily will it get easier thats the question , your reply has helped thank you for your time , i hope you are well and happy

sandra x

[paxo05 in reply to burtongal]

Your right basically you are the same. Fatigue and patience or lack of are my issues along with sometime no filter to what I say. Sorry in advance if I'm blunt.

The tiredness may not improve but how you handle it will pace yourself and accept what tires you.

It's amazing how many professional people who should know better never seem to.

Keep on plodding on

Pax x

[burtongal in reply to paxo05]

i find im angry alot maybe its because my sister does not understand what im going threw or maybe its because i can not do what i used to do its such a mess aint it sometimes , i do not mind bluntness honesty is the best policy i think , i have another operation i bet i will just start to feel normalish then i will be back in hospital , how do you cope in your every day life

sandra x

[paxo05 in reply to burtongal]

Just realised my reply didn't post.

I was basically agreeing with Cat that you have to pace yourself and recognise you will be fatigued. Also don't beat yourself up on what you can't do anymore. It doesn't mean you will never be able to do things it means simply you can't yet.

As for others going deaf I find helps. Concentrate on you and not others. It may sound selfish and it is hard to start and do but it helps.

Anger is common partly due to the changes in your life but also can be due to bi. If it's bad ask for anger management ...It may seem extreme but helps.

Once again sorry for late reply.

Pax x

[cat3]

As you'll know, it's a burst aneurism which leaves lasting damage owing to the contamination of the bleed, but even the surgical procedure to coil or clip an unruptured one can leave after-effects (fatigue/headaches & more) though to a lesser degree and, hopefully, a lesser duration.

I'm guessing that you've underestimated the intrusive effects of your recent procedure m'dear (2 months is VERY recent) and that shopping, bright lights, noise etc. will probably be challenging for some time. And, from both psychological and neurological angles, you'll be feeling emotionally fragile for a while.

But please bear in mind that others, no matter how close or caring, can't grasp the potency of the issues we face so try not to take such remarks as "Oh you're fine now" or "But WHY can't you ?" etc to heart.

I hadn't a clue about the effects of brain injury issues before I faced them personally. Even after nigh-on 8 years & with the best will in the world I still alternate between periods of energetic activity and days of utter lethargy, but pre-Bi I would've told myself it just wasn't good enough.

Do what you can without exhausting yourself Burtongal and be content in knowing you're doing all you can. If there's criticism from others just tell them, without further details, that you're doing your best and if that isn't good enough...….then it's their problem not yours.

Give yourself more time m'dear ……… Take care, Cat x

[burtongal in reply to cat3]

thank you very much for your reply hun , you have made me realise i am in the right and my sister is in the wrong , before my operation i thought oh sandra dont worry you will be ok after a few weeks u no back at work back to my normal self but im not so maybe thats why im so angry as i think i should be ok but im not some days are better than others but my sister does not understand this , but after reading your reply i understand what my brain and my body is going threw and that i should go at my pace not what she thinks i should be , sorry to go on but ive never been so scared in my life , i have cut my sister out of my life for now as she is hindering my recovery especially my mental health wise as when i talk to her she just dismisses what ive been threw and what im going threw , i thank you for your advice hun i really do

sandra x

[cat3 in reply to burtongal]

You're welcome Sandra. Stay strong... x

[Kirk5w7]

Im so sorry burtongal,

It is normal for many of us.

Im never going to be me again!

Sometimes there is a brief glimpse but then the fatigueetc takes over.

Walking through Manchester is a nightmare but i do push myself to do it from time to time, its no longer the enjoyable experience it used to be.

Nor is browsing round garden centres or the local supermarket.

So much taken away and so few people understand.

But we will carry on pushing the boundaries because its human nature to be the best we can.

I do hope you do get that understanding.

Take care

Janet

[deborah27]

I discovered something recently that helped me. I have a 'friend's who has been in my life on and off for over 20 years. When the full impact and consequences of my brain injury became clear and through Headway I began to understand what was happening to me, I felt able to explain about the fatigue and pain etc.. my words were met by total silences on the phone, a change of subject or comments such as, ' mmm, I'm tired myself but I just have to get on with it or ' I think you look really well' or 'oh well, we all have problems'

To begin with I was devastated, I stopped saying anything and spoke as if I was ok. My life was changed forever, I really struggled and was on my own. I couldn't speak about it and that is really lonely.

But, a few months ago, I became very seriously ill. I felt as if I was dying. I was so concerned about people thinking I was exaggerating that I suffered in silence until I was so gravely ill, it almost cost me my life. I was rushed in an ambulance with advanced pneumonia with complications and sepsis. I was in a dangerous situation. That friend, came to see me once, paid little attention to me, got me two oranges and two apples. I did not see her for seven weeks when I was sent home and had to have carers coming in to look after me for nine weeks. I was like a skeleton, I didn't know who was looking back at me in the mirror. She came to see me once and was very perturbed that taxpayers money provided carers, she said 'you wouldn't get that if you lived in England'. She couldn't understand why they were there or what I needed them for. She commented to one of them ' I think she looks great' we just looked at each other.

Now when calls come, the same old same old, no conversation about what I am still going through, no loving words or kindness. I am getting better and I am back at work. It is so hard but I really am a survivor. We all are. The point of this?

I thought it was my brain injury, but as it turns out it isn't, it's her. I dont call, she calls me. The disapproval is always in her voice. I will get strong enough to say goodbye one day, I am glad that I am me and despite the changes.... I know that my heart is good. The problem is theirs.

[pinkvision]

Hi Burtongirl, that is a very touching post. It's hard for other people to understand. It maybe a good idea to find a lecture on youtube about the effects of BI and share the link with your sister and ask her to watch it, better still watch it together. It sounds like you are suffering from sensory overload and it is making you fatigued. Have you had any information on this, a few changes could make a very big difference to your life.

Keep going, do what feels good for you.

[moo196]

Morning, just had a quick peek at your history and saw that your aneurysm was only Sept. That's very little time in brain illness /injury recovery time.

Shortish reply for now as I need to be elsewhere.

You are you.... But dealing with a very real illness. Be kind to yourself and perhaps get hold of some of the headway leaflets for family?

I had melt downs on the train to and in Central London around 4months post BI. luckily my son (24) was reasonably understanding.

Take your time. Rest, do a few things,.... Have you made contact with your community neuro rehab team?

On the plus side I like to describe myself as being a "new improved me" and I've managed to return to life with a different outlook.

[FridayS]

Good morning. I second everything that all

the wise members have said. It sounds like very early days for you and you shouldn’t push yourself at all. Fatigue is so debilitating and people do not understand. I see a neuropsychologist and she told me that we all

suffer with this lack of understanding because, in our culture, people expect you either to be ‘well or dead’. (She doesn’t mince her words...). They have no compassion for problems they can’t see. She has clients with MS who wish they were in a wheelchair because then people would understand .

You are still you, just a different version who needs treating gently. It’s taken me a while to realise that it’s up to me to live the best life I can with my reduced abilities. And part of that is avoiding people or at least conversations with certain people. And choosing the things and people who make me feel better.

I have reduced my expectations of people and , personally, I think that’s their problem. Wouldn’t you hate to be so lacking in empathy and compassion?

Take care, tread gently. You’re not alone.

F x

[lcd8]

I feel really bad for you. But I do unfortunately have to echo what others say here. Many people don't truly understand what its like to have brain injury unless they have been through it themselves. I think there is a great tendency for people to think that once a certain amount of time has passed that you should be 'over it' or 'cured'. We all know that isn't the reality of a brain injury. Lack of public awareness is a big issue in my book.