Help

[cjjaks]

I

Is there anyone who can help me. Just feel so afraid and alone. Had an subarachnoid haemorrhage. Two weeks ago.

[moo196]

Morning CJ - just wanted to say briefly you are definitely not alone - I'm sure there are others on here who have had the same thing as you and will be in touch. A lot of the feelings you describe are experienced by a lot of Brain Injury sufferers and you will find a lot of support and people who understand here.

my story is slightly different ( cvt ) but its good to connect and share with others who understand the frightening, confused frustrating and other aspects of brain injury.

Have a good day and I'm sure others who have experienced same as you will be in touch ( see I have repeated myself already but will leave it in as it just goes to show it happens a lot to lots of people ! ) xx

[gj124 in reply to moo196]

Just to say u r not alone. I had my SAT nearly 3 yrs ago. It's a difficult journey but things do get better. It's a new lifestyle u will get used to it just takes time. Agree with the post below, Headway will help. Also try Enrych if u r left with any physical difficulties. A good supportive family helps but u will get there. There's lots of help out there these days. Be motivated. Good Luck!

[StrawberryCream]

Welcome to this forum. I am sure you will find it helpful and supportive. The outcome of BI is similar for many of us regardless of how it was caused but like moo says - there are others on here who have had a subarachnoid Haemorrhage and who will no doubt respond when the read your post.

I would also suggest that you ring the Headway Helpline as they have lots of helpful info that they can send you and can let you know what other support you can access. Plus if you need a human voice to off load too, or ask questions, need support etc the Helpline is there for you.

Best wishes

[cjjaks in reply to StrawberryCream]

Thank you for your replies. I have been in touch with the help line. And they have helped me too. Just knowing there are others out there.

[StrawberryCream in reply to cjjaks]

Yes I found it extremely helpful too to connect with others on here who are likewise living with a BI, as it is the invisble disability and for which those who are a part of our lives, and lots of professionals, struggle to comprehend and accept.

Pleased to hear you have already been in touch with the Headway Helpline.

[angelite]

Hi Cj,welcome to the site,a great place to let it all out.Whilst we have all arrived here by different routes you will find that we share a lot of common brain problems.Come on in out of the rain : ) x

[Hidden]

Hi, you are not alone and it's understandable to be scared. My husband had a sub arachnoid haemorrhage 2.5 years ago and the first few months were full of uncertainty, worry and frustration. This site is really helpful with so many lovely people. Everyone will help, support and guide you through the next however long. Headway is a great source of information and help, I wouldn't have managed with out them. Good luck, and know there are always people on here to help even if all your ant to do is shout and scream. X

[Hidden]

I feel for you, I KNOW how this feels. We need all the info to understand what's happening to us right from the start.

I remember getting home and feeling not me AT ALL, back too stiff suddenly, couldn't bend over to put my slippers on as always had.

Then trying to wash up = felt in a weird dream, a nightmare, all of a sudden it was SO difficult. SO frightening and yes: totally alone in it. Stranger in a strange land, a world I no longer understood.

It took me a few days (2 weeks?) to totally fall to bits but I tried to hide that too. Went to GP and tried to explain and ask questions but had no words to say it but did the best I could.

I can still see him staring at my eyes when I told him about my vision. But he ignored that too.

I've learned so many VERY HARD lessons over the last 9 years. I know how it feels to be totally abandoned, have NO money and the MEGA stress and fear that causes, to be passed from pillar to post and just passed on, never-ending.

I know how it feels to get endless bills I can't pay and the terrible stress of just seeing a brown (or any) envelope that's obviously not from a friend. How I leave them unopened coz too scared to see what demands THIS time. Then if/when do eventually open have NO idea what to do with it, can't deal with it = MELTDOWN: got another today, demands for money, makes me go all trembling, heart beats hard, dry mouth, PANIC. Then (as right now) I cry coz EXHAUSTED by it all. Have needed it to stop for YEARS = broke down before xmas with it all,hospitalised mental health but NO help after = DUMPED. On and on.

Been suicidal several times. Real eye-opener to me this, only time before was when received letter of lies from surgeon about 6 weeks after op = went out to drive into oncoming traffic but couldn't do it. Sat outside GP surgery in car in complete despair, wanted NEEDED doc's help but had been SO often, pleaded with him and hospital, over and over, but DUMPED, just given sleep tabs and advised to take antidepressants. He MUST have heard me and what I needed but he believed the hospital instead of me and he threw me back to my alien desert and left me to get on the best I could.

I know what it's like to lose your home, I lost mine. I know what it feels like to not feel safe and secure where you live,must let anyone in to fiddle with/break more stuff. Then get moved on again and again. No end to it and each place AWFUL but in a different way and NONE laid out to fit how I am and hurt myself on things, fall and even in town don't see low pillars and big balls on the ground and hurt myself on them.

I know what paranoia feels like: TERRIFYING. I know what it feels like to be labelled a liar, exaggerating, looking for attention and threatened with getting the police if I don't leave.

I know how it feels when after being assaulted the police didn't write down what I said happened, they changed it and told to sign or leave. My possessions stolen,me injured (and GP didn't write truthfully my injuries).

I know how it feels to have my things fiddled with, lost, destroyed/broken and stolen. I cried for a whole day after one of my moves when I saw how many things were broken, things I cared about. I know 'only' things but some SO important to me.

I know how life can change in an instant: BAM!

And nothing is ever the same or good after.

I know how it feels to lose my skills including the most basic ones (wiping bum even difficult when cack-handed), having to resign from my job because I wasn't the same and they wouldn't help me in the ways I needed. I know how it feels for GPs to put wrong/incomplete info on sick notes and my MEDICAL stuff given to employer.

I know how it feels to lose all your privacy just because you get ill, have an accident or become disabled. It makes me feel paranoid and scared.

I know how it feels to have false information about you passed onto others and they pass it on again. Chinese whispers of the most malicious kind.

I know how it feels to have decisions about you taken by others without being involved/consulted openly and given clear simple truthful info from which to try to make a good decision.

And above all, the thing that has destroyed me far more than anything else: I know how it feels to be cut off from friends, family and support networks and feel so TERRIBLY alone. This is the worst killer of all = has driven me crazy.

All the money in the world can't buy love or true happiness, yes great to have enough to pay the bills, eat properly, replace clothes, do sports and hobbies but of all the awful stresses I've been trying to deal with the worst is this, without love, friendship and the right support (giving as well as taking) I am lost, in a lifeless airless world, HELL.

And hope. No hope left. I know it sounds silly but without hope I just want to die, have been there several times and again today.

So HOW to regain hope after so long and everything I've tried to do I've done badly or failed at?

I'm exhausted, broken, worn out and feel very very ill.

THAT is why the right info must be given right away and the right services must all be provided and health and social care must be all joined up with NO gaps for anyone to fall (or be pushed) into.

I sent emails to 2 places looking for a role for me helping others like me but got no reply.

The other day I met people who said they are part of a brain injury network and I cried because that is where my heart (some of it) lies, I knew that for so long but unable to do/find.

I've lost my creativity, my art, SO sad, totally blocked: too many letters and words and tasks which are beyond me = no space left for ME and what I WANT to do = no life.

At the very end, terrified of moving to yet another AWFUL place but also know how very lucky I am NOT to be homeless. I know how it feels to be STUCK in bad home with no choices open to me, it is TORTURE.

So I think I have learned the lessons the best I can and now have the experiences and a bit of knowledge which might help me to help others - but first I need to get myself into a good place (physically and emotionally) then set off on paths which are important to me, I enjoy and which hopefully will help others.

I know how it feels to lose confidence in yourself and your knowledge. I know how it feels to have MY reality dismissed as fantasy and lies, 'psychotic'. I know how it feels to lose my ability to think, speak and argue - it is worse now than ever and I can't even write a good letter now = my brain is too scrambled.

I know how it feels to be bullied, victimised, laughed at, to be the butt of people's jokes for oo long. I know how it feels to be lied to, tricked, having promises broken and sent on endless quests to get a bit of paper coz I'm so naive, stupid, gullible and easily manipulated. I know how it feels to be taken advantage of by those more clever and stronger than me. I know how it feels to be excluded from networks and fed fakery and not knowing WHAT to believe any more.

I know how it feels to be an immigrant and trying to do everything in a foreign language ON TOP of the ABI probs.

I know how it feels to be unable to understand jokes that I would have before and how useless and left out that makes me feel.

I know how it feels to get instructions I can't follow and don't even know if I should. I know how it feels to not know WHO I should trust, for what and whether what they tell me is true.

But it's SO hard to help others when in meltdown and despair and without love, friendship, real help and support it is impossible to break the cycle. I know how this feels, I'm trapped in it and no: when this destroyed you CAN'T break free on your own, you need a helping hand or two.

And so many are stuck in this cycle until death, living hell, no hope left, a bleak existence. On the very few occasions I'm able to dream (or imagine) a better future for me/others it feels so impossible and unreal that it feels false, this reality now is the only one.

My life before was SO different,so easy, so fun - but of course with normal everyday problems. I already knew money wasn't that important but that PEOPLE were, that wasn't a lesson I needed to learn. I already knew that life is what you make it and I liked how I was and my life I'd partly created. I already knew that good and bad things happen to people but I was always able (with help from others) to overcome anything life threwat me but I have lost that now and so many are in this position = at times we need to TAKE more than we give, we give back when we can, whenever we can, that's how it goes.

But when something dreadful like this happens yiu can't give as much, you overdraw the goodwill and people get sick of that. Maybe they think you'll never give back, are greedy and lazy? Sick of being judged on wrong info by people who think they know me but probably don't.

So I know, we all know that we all need and rely on and help others. I think it's called solidarity or society or something, no good at right words any more.

So to all here THANK YOU for your support, idea and words but I need REAL people and REAL hugs and REAL help and support with my life as it is now, as do o many of us.

Lost the energy to write, talk, paint, draw = sorry but way too long and me not strong enough.

Good luck all of us, hoping we can ALL get real choices and REAL help without having to try to do DIY all the time.

[cat3]

I had a SAH 3 years ago but at the two week point I wasn't aware of anything so perhaps you are set for a speedier recovery ??

Please don't be afraid. You are probably reeling from the realisation of what's happened, and the fact it could happen to you. But the after-shock can be eased by talking about it to others who've been there and dealt with the emotions you're now feeling, so please stay with us.

Maybe you could start by telling us more about how /when your SAH happened, and what support, if any, you've had since then.

This is a good, safe place to be and many of us rely on the support of our fellow members for reassurance and to lift our spirits.

Look forward to hearing from you. Love Cat x

[cjjaks in reply to cat3]

Thank you cat. It happened just over 3 weeks ago. Was on the phone to a friend. And felt the pain coming on. Got off the phone and called 999. Had cat scan and the dye.... Couldn't have the mir scan as too closed in for me. Was in hospital for 8 days. And all l wanted to do was sleep with a towel over my eyes. I never lost track of time..... Only after sleep. Now l am home.. And on my own. With my children in another town. So no one close to me. Its nice having people at the end of the phone. But l have to amite... Nicer having someone in person. Just feel so frighten as l didn't have that mir scan.,. And always what if. We me just doing the post today. Can see people having a help hand.

[cat3 in reply to cjjaks]

So can you tell us whether you had the haemorrhage coiled, and what sort of symptoms you're having now ? x

[cjjaks in reply to cat3]

Hi l had nothing done. Just the scan and then told to come back in 9 weeks.

[cjjaks in reply to cjjaks]

The Simpsons l am having is back of neck aches. Tired. Feel like l have run 100 miles. Can't sleep. Eyes hurting.

[cat3 in reply to cjjaks]

And can you tell me if the helpline thought the 9 week wait is acceptable ?

[cjjaks in reply to cat3]

I can't really remember what was said still waiting for someone to call me back. .

[cat3 in reply to cjjaks]

OK cjjaks. Please let us know what they say. In the meantime, try to rest as much as possible and drink lots of water.

Are you able to get out for food and other essentials ?

[cjjaks in reply to cat3]

I have had to order on line. As my children don't drive. And they can't get to me so easy. Walked to the end of the garden. Felt really dizzzy. So put me off a bit. Just stuck in my place and miles from anywhere.

[cat3 in reply to cjjaks]

I'm not surprised you're dizzy such a short time after a SAH. I'm glad you have the means of getting groceries, so all you need to be doing now is resting as much as possible and if that means sleeping most of the day (so long as it doesn't interfere with your night-time sleep) then don't feel guilty. You're exhausted because your brain needs to heal and sleep is the best healer.

But remember to feed yourself and drink that water. Water keeps your brain hydrated and helps the healing process too.

Please let us know what Headway says and keep giving regular updates on here so we know how you're doing.

If you feel unable to cope at any time, don't hesitate to phone for an ambulance & get yourself some extra help.

Stay in touch my dear. xx

[cjjaks in reply to cat3]

Thank you so much. Just knowing there is someone who understands. I will keep you up dated.xx.

[cat3 in reply to cjjaks]

xx

[aqua4]

Hi cjjaks. I had a SAH 7 years ago. I understand how you must be feeling right now.

Glad you have found this site and in touch with Headway.

The support from all the lovely people on here has made a huge difference to me. I'm sure it will for you too.

Take care

K

[cjjaks in reply to aqua4]

Thanks for your reply. It does help. Though still have major bouts of crying. L am sure l will get there.

[LifelongLandlady]

Hi and welcome. Firstly you're not alone as I found out when I joined last week (I think it was last week? !) This forum is great for info and letting out all those thoughts tgat others might not get.

[Alice5]

Hi CJ

Welcome to the site, it has been a real help to me.

My son had a SAH 4 years ago which he had coiled. He was in hospital for 5 weeks and in intensive care for about 2 of those weeks.

When he came out of hospital he had a lot of support from a stroke team which was invaluable.

I can understand how you are feeling, alone and scared and need reassuring. It sounds as though you don't really know what has happened or is going to happen.

it's a shame it's the Easter weekend so Headway probably won't get in touch until Tuesday, if you don't hear from them call again. Hopefully they will help you to understand more about SAH.

You have been discharged from hospital so quickly that I don't think you've had a chance to really understand or come to terms with what has happened.

If you can, write a list of the questions you have and see if you can get them answered by Headway.

Do you have a friend who can go to appointments etc with you? It's so much better than going on your own.

Remember you can always post on here and you'll always hear back from people with personal experiences of a brain injury of some sort or another.

You take care and let us know how you are xx

[Alice5]

I forgot to say that the tiredness is natural and your body telling you to rest.

My son also had neck ache which was told was to do with the blood from the bleed.

I would also suggest you go to your GP and tell him how you're feeling and go with a friend if possible Xx

[Fergie65]

I take my hat off 2 u 2 weeks after my subarachnoid brain haemorrage I was still out there with Pluto & talking gibberish. Not sure what support was put in place 4 u but there is help out there 4 u. I was in a specialised brain injury place & when I was discharged from there follow up NHS support was in place I attend NHS brain injury facility 4 pyschotherapist cos I think I'm going 2 drop dead any 2nd & 2 occupational therapists visited me @ home twice a week / contact headway if u r unsure what is out there 2 help u but there is help available ur not alone stay strong good luck

[cjjaks]

Was in for 8days and then sent home.. With an appointment in 9 weeks. L had to phone my gp. Had nothing. Been on my own with this. No one has called me back. Had more from you all on here than anywhere else. L know its Easter. Which doesn't help me. Roll on Tuesday. And thank you all again. Xx

[RachyBoo]

Hey Cj

Welcome to this site, agree with everyone on here, it's the best place with lovely people. I had my SAH 10 months ago and still working through it, still with bouts of crying!

Take small steps, go with how you feel, take care x

Headway are great!

Rach