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Balley77

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I lost my Mum to Sepsis in December 2013 (tribute is on the main sepsis site, in the Personal Stories tribute area, called 'Meryam'). As anyone who has been there will know, there is no instruction manual on how you should be, how you should react, when you should go back to work etc... Everybody is different.

 

For me, the support I had from Ron and Terence (Wales Sepsis trustee) by e-mails, in the aftermath of my bereavement, was such a comfort. 

 

It is six months this week since my mum died, and to be honest it has gone by in a total blur. My sister and I have mainly been focussing on my Dad (they had been married for 42 years). We haven't really been looking after ourselves. Last week was particularly hard as my parents shared the same birthday too, so the day was a real struggle for everyone. No doubt the remainder of this year will be the same, with lots of 'firsts'.

 

As a family, we have thrown ourselves into fundraising for UK Sepsis Trust. It has been the focus we all needed to carry on. Our first event is next week and is a sell out.

 

I am not sure we will ever come to terms with what has happened, but you start to adapt. It is still the first thing I think about when I wake up, and always the last thing I think about when I drift off to sleep.

 

If anyone else would like to keep in touch, or I can offer any advice, then feel free to get in touch with me. My e-mail address is:

Sarah@sarah-johnson.co.uk

 

www.justgiving.com/sarah-johnson51

 

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I feel sorry for your loss, and know from experience how quickly Sepsis affects you. I was fit and well one day, then near death the next. I was treated quickly, did not suffer any organ failure, and did not need ICU. This happen in mid January , I spent 9 days in hospital. But it is the aftermath that is difficult to cope with the pain, fatigue etc. there doesnot seem anywhere to get more information. I would like to be able to contact anyone who has survived this terrible illness . My thoughts are with you and your family . Kind regards.

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I'm lucky to be a survivor - and even more so that I have limited after effects. Although overall I may have suffered a prolonged illness I feel overwhelmed by the impact Sepsis has on other peoples lives - and that's why I'm here - and hoping I can help in some small way.

 

There is a new section for survivors and it is a reference point for those that have come through and the friends and families of those that weren't so fortunate.

 

The forum is for everyone and a great opportunity to build a community for all those affected

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Hi Mark

 

The forums are looking really good, so I think you have done an excellent job!

 

The only thing I would say is that I think it should only be viewed by those who have logged in. Most forums, and especially those with personal stories, would normally be a closed forum. An alternative would be that the information only part is available for public to view, but that the ones specific to survivors, bereavement or other more personal issues would be closed.

 

Just a thought.

 

Regards

Sarah

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Hi Sarah

 

Thanks for your comments on the Forum - appreciated.

 

A non public area sounds like a good idea - so will look to set one up - and poll some opinions from the registered users! The important thing is for everyone to feel comfortable and - I suggest - have the choice of whether they post in a public area or a restricted one.

 

Thanks again - watch this space (well not this one specifically ...)

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I feel sorry for your loss, and know from experience how quickly Sepsis affects you. I was fit and well one day, then near death the next. I was treated quickly, did not suffer any organ failure, and did not need ICU. This happen in mid January , I spent 9 days in hospital. But it is the aftermath that is difficult to cope with the pain, fatigue etc. there doesnot seem anywhere to get more information. I would like to be able to contact anyone who has survived this terrible illness . My thoughts are with you and your family . Kind regards.

Hi there Woody, I have recently survived sepsis back in early April 14', I havent had any organ failure as I know to as yet, it has left me with a very weak right lung, I have a rattle now, just been for a follow up x ray on my lung, await the results. I was lucky enough to stay out of ICU just about, I was in hospital for 4 days, very weak verypoorly indeed, I could not walk straight I had lost my muscle co ordination for a while, it took a good 7-10 days to come back. I am now suffering with post traumatic stress at present and very tearful at times, I have gone back to work for my own sanity really, part-time though. There is not enough support I agree totally, the hospital discharges you without any aftercare advice etc. I recently bought a book called 'Gyroscope', an american survivor who decided to write about his near death experience, mainly because I have started writing a book on my experience of it and did not want to re write any of his work, but it is a good read, to cope I have had to put pen to paper to get it out of my system and to try to remain positive in the aftermath of this deadly illness. I try to keep a daily diary on my moods etc. I do get very tired easily also, mainly when I have had a day at work, it really takes it out of me, but mentally being at work helps. Try to stay positive and hopefully your body may try to repair itself slowly, I was back at work after 4 weeks of having sepsis, my Gp thought I had gone mad when I stated I wanted to return to work so quickly and it was too soon, however it was my choice to go back and it has done me the world of good, kept my mind on other things apart from sepsis, after I returned home from hospital all I could think about was sepsis, I carried out so much research into it consumed my mind totally, all my family would hear was sepsis this, sepsis that! There are no forums apart from this site its the only one in the UK but its re assuring to find other people to communicate with afterwards for support. 

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Dear Sarah, I am so sorry of your loss and the after affects that come after such a loss and the feelings and shock that attended one after. I know nothing I can say will lighten the sadness, but off my condolence and God bless. Terry

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Thanks Terry.

 

I am trying to put all my energy and concentration into raising awareness of Sepsis. If anything positive can come from this part of my life, then that is a bonus.

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