is anyone there to talk ?
alone: is anyone there to talk ? - Headway
alone
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Julesgettingthere
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Hi. How are you? Do you also have that experience of not really fitting in the world around you anymore? x
you too I guess.
there isn't much left sometimes is there
This quote sums things up for me - 'Something I don't remember has done something I can't see and made me someone I don't know'.
Omg this is sooooooo true I could cry
Hi both, can relate to the comments. Being alone, especially at weekends is the pits - isn't it? Unless on HW no else you speak to understands the ay you feel abouts certain things at certin times. I've just given up here - no matter how you try and make people understand, they don't!
i often 'listen' to everyone talking on headwway - for me its the only place i don't feel alone.
I have now given up putting energy in to try and get 'loved ones' to understand.
So many things have been written about me by so many people, but i haven't been able to speak yet.
If a person hasn't a role anymore what are you to do with your life. How do you grieve/when do i start grieving and whats left.
m getting old and grey and am not fun to be around - whats the point ?
Jules
Hi, sorry I disappeared for so long. I know what you mean about your loved ones. I think its not only them, its friends and others you know as well.
I'm sorry Jules I don't remember your circumstances but know you've been on HW a while now.
Grieving - It took me 5 years to get over my fathers death in 1998. I think its about the cutting of ties in close relationships - things change, we need to find new ways to accept and adapt to those changes. How we do that without some support, I don't know, other than finding an inner strength from somewhere.
Yes its like losing a loved one - except now that loved one is yourself - you are not now the person you were, you have lost the essence of 'you' - do you think perhaps that's what you need to grieve for - to get closure on what happened ?
its about 'finally coming to terms with the 'loss' of you. I have good days, I have many bad days when I cry - I lost more than the essence of me - I know and accept it - but I haven't come to terms with it. I'm still looking for support and help from the medical system here, in terms of effects of BI and I need a lot of practical help but only have strangers I can ask - all systems here work oh sooo slowly.
The best I can do at the moment is distract myself - and because of my scottish roots I am following the Independence news on TV - there is also the by election coming up in Clacton and as an expat I have retained my right to vote. I was 67 last month so also feeling a bit of an oldie 
What do you do to distract yourself? Are you able to get out and about?
hi there
Mine was a motorcycle accident 4 years this October 12th.
I had a spinal operation that 'put my back right' so I should be happy I got away with it.
I work part time - thats what I do, its about all I get up to.
I forgot it was 'independence day' .... i'm from Newcastle, so not far from what will be a new boarder ! Oh well... hope it goes your way, if your a NO or Yes vote.
Jules
x
Hope your back is OK Jules, like everything else, it the follow on after effects that get you - oh yes I have travelled up your way once when en-route to Scotland. Living in France where I had the BI last year, as I do now, means I don't get the vote in Scotland anyway, just Clacton in England.
Its amazing how suddenly different things happen and when there are things in common with people you never met before, new doors open in your life, as well as some of the old ones closing. Sorry I probably gave the impression I was an expat from Scotland to England - no just have Scottish roots and family up there still.
Through coming back online to both forums today, HW and the ex-pat one here where the ex-pat 'Independence' forum has been quite feisty between both scots and english expats all living here now, got the memory jogged even more and meant I could almost forget about everything elssse.
In fact s I write this, I'm having great fun listening to Land of Hope & Glory and Jerusalem - at quite high volume, with internal windows open - shutters closed - so the french who have been partying in a hall opposite can get a good old dose of some good British music - instead of me alway hearing french music! Great now its the National Anthem!
Today has done me more good emotionally and mentally than anything else has in a long time!
Hi SAMBS
yes, sometimes a distraction like that is a good thing.
Maybe its not such a good thing for me to keep trying to do what I did pre accident - its not easy is it.
France ? ... wish I was there, is it warm ?
Julesgettingthere
x
Hi Jules, you've had better weather in UK this summer than I have here. This last week is best one we've had. There's been a lot of rain and wind mostly. The weather tracking across Atlantic this year has been hitting across the top of France rather than S of England. Almost wish I'd stayed in SW France, they've still got high 20's down there. Re distractions just been making a fuss of a goat tethered outside a hall across the road from me this afternoon! See my reply to Strawberry Cream.
Sooo slowly is the NHS version of breakneck speed.
The other thing is they're apparently all trained to start the answer to every question with "I don't know. I'm not her nurse/doctor/I don't work on this ward/I wasn't here". To be honest, you might as well ask the person pushing the tea trolley)
any answer over here Mikep would be good for me. Everyone bangs on about how good the french health system is - its same as NHS in that if its an emergency - they're brilliant. The waiting lists aren't like they are in NHS, I have my 5th MRI this year in 9 days time, they've examined every organ I've got, one of these multidisciplinary ideas now, that I believe NHS also does, but still need support/help for BI 18 mths on from it. then received a letter 3 days ago with an appointment date to discuss results of next mri with a new specialist 6 days after. but not for my brain yet - because they've moved on to my blood infection (which has affected liver now), diagnosed initially 5 months before my SAH/BI - its a ? viral Hep / infection, is there a connection? I don't know. I don't 'feel' ill, all my doctor wants me to do is take more and different anti-depressants for 'anxiety'. I know you cant 'cure' a BI but I don't want to live my life on meds, surely some rehab therapy would help.
At least all you folks on HW understand, I just can't believe they don't have people with BI's in France, so its either my doctor who set the ball rolling with local hospital or the fact I'm english and there is a general lack of understanding between me and the medics.
hi All I am here too. I realise my problems are minimal compared to others here. Only got post concussion symptoms. Neuro said I am high functioning ha! Not compared to how I was before my "something" happened. Love the quote Strawberry cream. But still feel isolated from others and struggling with living in this world. had a hoppy morning as I get so distracted and my ability to plan follow through and make decisions is pathetically bad. takes me so long to do things now.
Hi Tortie (V), Time lag is an issue, it now takes me hours to do what I used to do in minutes, years ago - self-distraction - unintended cos it just happens, means I leave one thing and suddenly start doing something else etc etc so I can several days to totally complete a task, especially when it involves paperwork. Sx
Hello Tortie
I don't think I have spoken to Strawberry before - i already like her, yes, her quote hit the spot with me also.
When you say 'before my something happened' i could relate. It doesn't matter what it was or is, its about whats left. What it took away from you (you thats inside your head).
X
Jules
Thank you Jules. Such a boost to read someone saying they 'like me' in the world where I so frequently feel I don't fit and don't get on with people anymore. x
Its odd though isn't it. I thought it was just me, until I started reading peoples posts here.
I wondered if i was now just a horrible person. The more i learn the more i know its more that I am different from my friends now - it must be odd for them too , to loose me, me who i was. Maybe they wouldn't have chosen to be friends with the Jules that is now, I don;t know.
I know we cant change who we are now - i tried to ignore it and pretend nothings wrong, so people would accept me, but it doesn't work - it doesn't fool anyone.
I spend my days now trying to be a good person and people like you Strawberry are new friends. Maybe its easier to make friends this way because we can hide behind the computer and have time to 'construct' what we say (rather than coming out with the wrong thing again) ?
How are things for you today ? I just lost my car after parking it at Sainsburys. Used my 'brain card' with the attendant and he found it ! First time i have used it !
At home now, quite low, but please i'm able to chat to you, it helps.
Regards
Jules
hi Jules just checking in. Sorry you are feeling low today. Glad the brain card worked with the Sainsbury's attendant.
Had another disappointing time with friend yesterday noises restaurant meant I couldn't say much of what I wanted to say just had to let her talk as eating and dealing with the noise was all I could do. Came home feeling frustrated rather than enjoying our meeting it became feat of endurance. Alternative is eating here but then that' means shopping cooking and washing up.
Just off to get the milk I forgot to get earlier.
Vanessa xx
We are decorating and the paint fumes are seriously causing me brain ache so rather than attempt to add to the conversation I think I'll just have to give you (all) a virtual hug
Oh I enjoyed my hug Iforget thanks sorry the fumes are stressing you. yes Jules we could adopt that in HW Forum as all our "somethings" are different but we are all dealing with brains and lives that are changed. Shirley my user name could be skippy the kangaroo as I hop about so much now. Oh to plan a task, start at step 1 and walk through to the end what bliss that would be! I usually leap into the middle double back to do missing essential steps then hop off entirely. Et viola time has gone with loads of part done stuff and lose ends and muddle. As for keeping track of time disaster! Vanessa
'muddled' is a word I have heard over and over - its probably the best description.
the 'somethings' ... yes it probably about a change in the being
x
Hi everyone, just love how you all 'get it' when so many don't. To see even if not easy to join in. K
oh please join in with us K, yeah its like looking for a needle in a haystack sometimes - you just want people to understand you can't help not being like them and not the you, you were before. I sometimes think if you sit your family/friends down in front of your computer and make them read other peoples comments, then even if they don't understand, they might get it!
I have good friends (best friends they once were) back in UK - he fell off a ladder whilst painting last September or October I think, landed on his head - no fracture, no haemorrhage, but was unconscious for several days days. They have 3 girls, 4 grandchildren and loads of good friends - a great support network - Even my OH was back in UK to visit one of our sons and drove 70 miles to see him. He was discharged after 3 weeks and had a physio visit him at home. Immediately he was home, he couldn't remember passwords on his computer, was confused, disoriented, forgot to eat if his wife wasn't there, and everything else.
I had my car accident a few weeks after and where I'd been pretty much better than him before, was allowed to drive here with no re-examination, so good old GPS for directions. Never gave it a thought, so 4 days after driving almost 600kms it was bang and airbag in head - I had seen a car coming towards me on same side so did an emergency stop and hadn't realized at time I stopped it was me on wrong carriageway! Other driver hit me - took no avoiding action till it was too late. His o/s hit my o/s (I was in a RHD he in a LHD car.
Friends wife has no sympathy with my situation now, because my SAH itself was 18 months ago - so yes you are right K - they don't get it! even the emergeny services who took me to hospital and the doctor who examined me, none of them listened when I said I'd had a brain haemorrhage 9 months before accident.
Nobody gets it when it comes to effects of brain injuries - except us with them!
Sometimes I wish I lived in a community of people with BI as we would all understand, but then I think of how it would be, would we be able to motivate each other or keep each other on track or would it be complete chaos?
Hi
And whats wrong with total chaos ? .... sounds fun
Julesgettingthere
Just been catching up with reading the posts since julesgettingthere post asking 'is anyone there to talk'. The comments are spot on as to how I feel and how society does not understand BI and there naff reactions. Like many others this has resulted in me becoming very socially isolated because contact with the world out there seems to frequently end up with others being frustrated and irritated with me and me being over reactive and emotional. I seem to strain every relationship and interaction these days and most friends (I have no relatives) have backed off and ceased contact or at best kept minimal contact. I find my emotions are best managed by keeping myself to myself as much as I can. I am fed up with people saying 'well you look ok' and reminding me of how seriously ill I was and not expected to survive when I was in a 3 week coma as if that makes how I am now acceptable or tolerable. Although my general intellect is intact and I can still string sentences together they don't acknowledge or understand the cognitive, emotional and social problems I significantly struggle with. Managing basic day to day living is very difficult and mentally draining. I am an older mum (55 yrs) who adopted a son as a single parent before I was taken suddenly and seriously ill with Bacterial Meningitis & Septiceamia in May 2011. For him I have to carry on although I frequently feel a desire to give up or wish I had just slipped away when in the coma. But my love and responsibility for my son is so strong that I can't indulge those thoughts and feel wrong for even having thought them - but they are there. I do not like the person I have been changed into and am stuck in my grief for the old me. I have been passed from pillar to post by the NHS, with services not understanding brain injury, each others role and wrongly expecting each others service to be dealing with my BI problems resulting in no one doing anything or responding particularly when I have ended up in crisis in a very bleak depressed state. Since I was discharged from hospital (so not including hospital Drs etc) I have been seen by 20+ professionals, each with there own conflicting ideas as to what my problems are, how they should be treated and what I should be doing. All thinking that they know best. I have frequently felt misunderstood and blamed as if for example I should be able to control my emotions that frequently plummet into distress and depression for no rhyme or reason. I agree that this site brings us together and provides a genuine understanding of the impact of BI that is hard to find elsewhere. I like Stardrops thought of a BI community where we all lived together but I guess that would as she also says have its problems too. SAMBS I connect with the way you express and chat in your blogs, maybe that is because we are both of the slightly older generation. Pity I don't live in your area rather than Kent as virtual blogging doesn't have quite the same supportive feel as a cuppa and a chat with someone who really understands life with BI. Also thanks to the others that have joined in this strand of chat as I can actually relate to all that has been written. Thanks and best wishes to all.
Hi yah StrawberryCream
I read your post and throughout it I was nodding to myself (It could have been me writing it) maybe we are all experiencing the same .
One sentence said it all for me - 'I don't like who I have become and grieve for the old me to come back,.
I have heard so many times that 'shes not coming back Jules'. So many times, but it still feels like a knife in your heart every time - every time I smile and nod and walk away from the subject. It makes me feel totally betrayed.
I used to get angry (still do sometimes) with other people because I feel betrayed, but I am learning its not them that took my life away. There isn't anyone to vent the anger on.
This site has taught me to talk a little - I feel i am one of the family now. And to be able to talk to people any time, day or night about emotions is a saving grace.
Like you, I dont know what is in my future I just hope its more than what I thinkj it will be.
Take care Strawberrycream - fantastic talking to you
Julesgetingthere (some days)
Hi Strawberry Cream, yes I do go on and on don't I? - partly because its virtual blogging, its the only way to express how I feel about things and yes to others who understand and often fell the same as well. You are right when you say its about 'the impact of BI' and in your situation, all those health/welfare visitors who don't understand effects, also add to the impact on you.
I hope I'm right when I say most of us all seem to have a good level of maturity and understanding of what has happened to us and what we feel we know we want to happen to help our recovery. I'm finding it less stressful just to stay out of the social side of anything now - makes life easier. I can cope with the silly soaps on TV better than real life. I've just had a really bizarre experience today as well, there was a wedding reception in the hall just opposite my mhome last night - well it finished at 5am this morning,! Now this afternoon, bride/groom and friens are back to clear up, complete with a goat, tethered to a bench so of course I went and made a fuss of it because it was bleating for ages. Then went back with camera, it seemed to like my oft english voice, compared to the harshness of how the french sound, next thing I know a man is taking photos of me with goat. Either theyv'e ended up thinking crazy english woman or just don't make a fuss of animals as we do.
Someone said hello Shirley, she obviously knows me locally, but I couldn't see her features on her face at all, a problem I'm having a lot, I just don't see detail even with glasses on from a short distance, never mind a long distance. Has anyone else had same problem with their vision since their BI. I knew I needed new glasses anyway, but I'm still waiting to see an ophthalmologist for a proper eye examination 18 months on from BI.
Hi SABBS
My vision wasn't perfect before the crash - but has deteriorated rabidly since.
Its not as bad as yours: mine, when i read paragraphs, the lines mix in with each other and when I watch tv or a person face for any length of time it looks like everything is in 3D.
Its odd, I thought it ws the tv set itself at first. I just live with it.
Hope the goats ok !
Julesgettingthere
x
I like your chat and spill it out as much as you like! Oops think I misread your previous post as just caught on to the fact that you live in France and not Clacton! So an ocean apart. Was amused by your tale of the goat. I don't have a problem seeing features but I do seem to struggle with facial recognition so don't remember who they are or there names unless I have known them for a long time. Did have double vision for a long time but that has settled although each eye focuses differently now.
Hi
Did your double vision start straight after your injury and how long was it until it got better ?
Had double vision when I came out of the coma and initially I couldn't read written letters or words at all as was just a blurr that jumped about too. It gradually improved a bit so providing I wasn't fatigued and used just one eye (closing the other) I was able to read some everyday things. Initially I just saw my opticians a few times but after a year or so I was referred to Opthalmologist at hospital and was followed up. After about 18 months it seemed to recover so mostly not a problem now unless I am very fatigued. Think some of the tablets I had been on also exacerbated the problem as some had side effect of double vision!
Sounds bit similar to mine, but not as severe. Yes, i think some of the drugs either cause it partly and tiredness also brings it on now for me.
x
Jules and Strawberry Cream, my double vision was immediate afterwards, but like everything else its the car accident made it all worse since November. When I was going through my can't sleep period, stayed up 3 days and nights on one occasion. Another night I couldn't sleep, it was a really clear dark one and a full moon, I looked out the window a the moon and it looked like the olympic circles I could see, yes there were 5 of them!
Another time, I thought I could see 2 cats crouching down outside, turns out in the morning it was 2 large stones on the cover of a septic fosse [tank] here, the other side of the wire garden fence. A heavy wooden fence post, painted white at about top 1 foot of it, from a distance looked like a tall old man and his wife with white hair standing at end of a footpath. We had a topic on this last year and were talking about 'perception' - not seeing what we perceive we are seeing. Because mine is so much worse, that's whi I won't drive again I know its not safe for me or other drivers.
I think you cold both be right about the meds though. I have been on a blood thinning powder here, Kardegic, since the BI. I've since then also been put on Betahistine, an anti-depressant because my doctor thinks I'm anxious - who wouldn't be, battling to get rehabilitation help months and months after a BI, with no support medically or from family! I've been told I have a viral infection, so had a fibroscopy a month ago followed by an ecg - doctor decided I have high blood pressure so now take a blood pressure pill. All at same of day, morning, which I queried and was told yes I must.
Well I sleep well now every night, wake up feeling like me before BI, get up, take powder and my Thyroxine tablet [forgot to mention that] have breakfast and 2 other pills. Within 1/2 to one hour, my head is all over the place. So do I think its also the meds. Oh yes, ear infection means 2 antibiotic drops each morning and evening - 1/2 way through course at moment.
So yes I'm given the meds, do I think I'm getting right and proper treatment - no!
Around for a while jules, whats up?
Sorry folks, got in a thread muddle... apologies!
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