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hello all SAH 19th may 2011


lpool_jan
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Hi Jan

A big welcome to BTG. You will get that people really dont understand the fatigue and how it affects us. We all understand on here. I still have people teling me now not to be so lazy. My partner at last understands now how tired i get especially when i over do it. You are doing really well to get on this site so soon when it was only in May.

Take care of yourself and be lazy you are in recovery.

Ann x

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Hi Janet,

Welcome to BTG. You had your SAH in may and people are already saying that?? Wow. Get them to look at this site.

There is not enough info for patients and carers/ families. My sister said to me the other day that they all didn't realise how long recovery would take. Neither did I, I thought I'd be back to work after a few months. Right now I just don't see how I could cope with work, and I loved my job, done it for 20yrs, minus a few yrs when I had my daughter and some time off due to other health issues.

You will find this site a great source of info, and it's such a relief to be able to go through the highs and lows with people who truly understand.

You take all the time you need because hopefully time really will be a healer.

SarahLou Xx

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Hi Janet,

Nice to 'meet' you. I have just read your article in 'my story'. I cannot believe how badly you were treated especially with such a family history of a bleed. That paramedic should not have been at work if he was unable to carry out his job. You & your family must be so angry (and rightly so). I also don't like complaining as it's good to be here and eventually the NHS saved your life but I do think I would have to make a complaint in the circumstances you went through.

It's great you found this site so early on & will definitely help you to understand things & give you a positive idea of what the future holds. Did you find this site yourself or did the hospital let you know about it? I;m only interested as I heard about it 2 years after SAH from a brain injury support worker (also only involved only 2 years later!!) The earlier you are given help, the better.

Best wishes

Michelle x

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Thank you all for making me feel so welcome,

i found this site myself after looking online for advice and information about what had happened to me.

i did complain to the hospital about my treatment by the junior doctor and the fact he ignored all the signs and family history, i attended a meeting and was told that the hospital didnt cause the bleed or aneurysm, so no apology was neccessery as the outcome would have been the same anyway, they said the delay wouldnt have made any difference to me.

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Hello and welcome to BTG

I am so sorry you were treated so badly by the hospital.

My husband put a complaint in because when I was taken in to A&E I was left alone for 3 hours unable to stand light, vomitting and crying in constant pain. As soon as the doctor saw me he realised it was something serious and got me scanned and we went from there. Anyway I'm telling you because putting an official complaint in took a couple of months to get a response but when they did the Chief Exec wrote a long letter and apologised and told me all the changes they were making as a result. If you feel up to it talk to your local patients liaison panel so they can help you.

I am sorry people are also being so unsympathetic. I am nearly 6 months post SAH now and just finally starting to get my life back, it is hard for others to understand and some don't try x

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Oh Jan, the sympathy from the medical staff is underwhelming to say the least!!! The outcome may have still been the same but the treatment to relieve your pain & suffering could have been so much quicker (along with the bedside manner...)

I am considering action for my son (with legal advice pending) He had a brain op in January after a month of being dismissed by local GPs, NHS 24 and nearest A & E. I understand the outcome would have been the same (luckily for them, any longer & he may not have been here :shocked:), however he was left in pain & suffering for 3 weeks after he got ill and I was made to feel like a neurotic mother. He is 10 years old and I will never forgive the 'professionals' for making him suffer for so long despite my constant insistence for him to be seen. There is no excuse for failing so badly at your job. I don't want blood, a simple phone call to apologise for getting it so badly wrong would suffice, still waiting 7 months later.

Take advice if it is available to you, don't be bullied into thinking the outcome would be the same regardless.

Good luck xx

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what worries me is the fact that the junior doctor at royal liverpool hospital wanted to give me paracetemol and send me home to sleep it off, the neuro surgeon at walton hospital told my family, had i taken this advice i wouldn't have woken up the next day. i was so ill by the time i reached walton that my children were told to prepare for the worst as i had little hope of making it through the surgery.

this is why a quick sorry we made mistakes from royal liverpool doesnt seem enough.

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Hi Janet. Welcome to BTG - so glad you found this site as early as you have! I am so sorry to hear that you received such atrocious care during such a frightening and life threatening experience!!! You have every reason to feel angry with the way you were treated. You would hope that making a formal complaint would serve to correct any further errors and horrid treatment for anyone else in the future!

As far as others (family members especially) saying things that are hurtful, they obviously have no understanding of what's happened to you and what you're going through! I know that doesn't feel good!!! Someone before mentioned suggesting they come on this site - great idea, for if they do, they'll soon learn that what you're dealing with are the after effects of SAH and all of us here have and are still dealing with these things at different levels. There are several posts and links on this site that may be helpful to you and family members: A Letter to Your Brain (I don't know how to insert the links:roll: - I'm sure someone here will come along and help with that!) another was posted by Riane and links you to a booklet written by a neuropsychologist - http://www.tbiguide.com/index.html. The booklet is great, easy to read and will reassure you that what you are experiencing is "normal" for SAHers.

This is a great place to be - tons of information to help you through and most importantly, for me anyway, support from others who know what you're going through. You're not alone. You can ask questions, rant and rave, have friendly chats, whatever you need - someone is always here :yesnod:

Look forward to hearing more from you! Take care and get the rest you and your brain need,

Carolyn

Link to A Letter To Your Brain - http://www.behindthegray.net/vbulletin/content.php?151-A-Letter-From-Your-Brain

Edited by Karen
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Hi Jan

welcome to the site and the family.

I am shocked, stunned and amazed that they have said that they outcome would have been the same - have they not seen the FAST advert for strokes???? It's essential that you get treated as soon as possible. I'd definitely put in a formal complaint and take it as far as you feel able to - the next person may not be so lucky!!

As for the people telling you to get over it and that you're lazy -ask them if they'd be saying that to you if you'd had a heart attack or had a massive bandage around your head or had broken a limb!!!! Sorry for my rant but comments like that can make you feel worse about yourself than you already do. Like someone else said - get them to look at this site and then they may get an inkling as to how it actually feels for your brain to have had a "heart attack".

Anyway, you are very early in your recovery and you need to listen to your body rather than people who have no idea. Plenty of rest and plenty of fluids and take care of you!!

Speak again soon.

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Hi Janet

Welcome to the site, I agree with Sami you should get family and friends to visit the site then they'll know that you are still really early on recovery wise. Sorry you had such a bad time at the A & E, I think a fair few have had similar experiences with our "local" hospitals as the others have already said do think about pursuing further action if necessary the response you received is really inadequate.

Good luck with your recovery and look forward to hearing more from you.

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Hi Janet

Welcome to the site.

Your treatment (or lack thereof) was disgusting and I hope you do feel able to follow up and continue your complaint to make them realise that mistakes were made, and the way you were treated is not acceptable for anyone.

I still get annoyed now when people trivialise what I have been through. I have recovered remarkably well, but I do have to take care not to do too much, and I do get so tired that I struggle to find the right words and get a bit ratty. I am 39 not 79 so I not accept that it is just me 'getting old' as some have said. And others get just as tired as me too... really??... I think not. But we can't expect others to understand unless they have lived through it themselves. I have one friend who seems to be able to comprehend how I feel as her brother has suffered and recovered from 2 strokes. Others just don't seem to have anything to relate it to, or don't wish to try to understand it.

Look forward to hearing more from you

Kel x

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When I passed out with bleed/SAH ...I wasn't fully with it, and do not remember the July09 til sept. 2010...

.

My husband said the surgeon was good...but sorry to say the hospital staff where lacking in aftercare..A nurse tried to stand me up after my op...but I do not remember ...my daughter saw her and said "isnt my mum supposed to be in bed at a certain angle and not

Standing ?"this was a day after op.the nurse wanted to get me on (camode) Not all nurses where as bad as others, some where kind`my

Hubby and Daughter said...I am glad I do not remember a lot..or I would be angry like the writer of this link is

I am fine now~got blood poisoning ie Sepsis and ventriculitis.....I do not what caued it and oh and bed sores ?

The surgeon told the nurses he didn't wat the bed sore to go to a No.5....or was it 4 ??? memory loss ..lol.

Glad I had a good surgeon who kept an eye on me...Call me lucky lol...Just got to learn to walk.....While on here the NHS have

taken my money and when I get ill they offer me £7.00 per month...if I hadn't caught so many germs I 'd be up and walking. but ever day I improve thanks to Hubby and Daughter xx I pay for my own Hydrotherapy now...and all my needs.. swear words lol

Love

WinB143 xxx

Edited by Winb143
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Hi Janet

Warm welcome to the site.....

as you already know by now your not alone in the fatuge and that people thinking your lazy all I can say is dont be put off by that explain how this has left you tell that that you are no way alone in it.

its nice though finding out that you are not alone and that others too feel the same......

sorry if this is a bit of a babble not exactly a good day for me weather is hellish always a thing for me now....

take care

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http://www.brainandspine.org.uk/whats_new/news/coping_with.html

Hi Janet

Welcome to BTG. Follow the link above and get your family to read the leaflet about the fatigue that we suffer from. People don't seem to understand the difference between fatigue and feeling tired. If you feel tired, you have an early night and feel refreshed the next day but with fatigue it can go on for days/weeks and no amount of early nights will make any difference! You most certainly are not lazy!

It's such early days for you and you are doing really well. It took me months (about 7) to be able to sit at the computer for any length of time!

Take care.

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