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Posted by philly on 29 March 2016 - 07:21 pm
yes totally normal. make sure you talk to the people you trust. sepsis is life changing. your priorities will change (for the better). write down your experience- I found that helped too. you might find you have PTSD... you might at some point need to speak to your GP about counseling... it all helps. stay strong
Posted by Leila on 12 September 2016 - 05:58 pm
Posted by Mark Sollis on 23 March 2014 - 09:02 pm
Posted by Gillianflutes on 29 May 2016 - 02:36 pm
Posted by mmoo on 28 November 2015 - 07:00 pm
Posted by Balley77 on 05 September 2014 - 07:19 pm
I am so sorry to hear what you went through Terry. It is frightening how quickly Sepsis strikes, and there is such a small window of opportunity to treat it. If that window is missed or overlooked, it has devastating outcomes.
Things are obviously still ongoing with you at the moment, and still very raw.
I am sure you know that we are all with you on this one, and if there is anything we can do, please just ask or PM.
Posted by red squirrel on 19 February 2017 - 01:57 pm
Members have recently posted about how they can and do raise awareness within the NHS regarding sepsis.this is for anyone who would wish to do the same but are unsure about how to make a start.You dont have to be a patient/survivor to do this, although patients are encouraged.
In the first instance you can sign up to your local hospital news letter either by post or email this will inform you of any new initiatives taking place and how you may help.
Most hospitals now have a dedicated patient and public involvement department and in some cases can be contacted directly.where you could help in areas such as.....
Become a patient leader
Take part in projects and initiatives
Joining the register of readers to review patient information leaflets
Take part in decisions that affect how services operate
Join a patient- led assessment team
How to plan and provide services
Help junior and interns become more patient aware
take part in how to develop and change the way they provide services
Become a secret shopper for the hospital.
there are others also but they vary by region and they are not all sepsis- related
iv done some of these myself and have found them on the whole to be immensely rewarding,
Recovering patients may find some of these activities a little tiring as some may involve a whole day visiting wards, form filling and travel so pace yourself.some hospitals can arrange travel in certain circumstances also.
Posted by MarkDUK on 09 February 2017 - 09:48 am
Posted by Dave Carson on 17 July 2014 - 09:55 am
Today I am putting final touches to my talk. I have been invited to be guest speaker at an event in the Guildhall London. I will be giving a talk to a group of police officers on overcoming adversity. I also hope to raise awareness of Sepsis.
Posted by MarkDUK on 06 November 2016 - 12:43 am
Posted by Leila on 12 September 2016 - 06:30 pm
Posted by red squirrel on 23 August 2016 - 06:57 pm
I v been reading around and found some interesting stuff on post sepsis syndrome (PSS), Its taken from two studies one recent (2016) one not(2013).So what is it.
Post sepsis syndrome is a condition that effects upto50% of sepsis survivors they are left with physical and/or psychological long term effects such as...
*insomnia,difficulty getting to sleep or staying asleep.
*nightmares vivid hallucinations and panic attacks
*disabling muscle and joint pain
*decreased mental cognitive function
*loss of self esteem and self belief.
however this does not mean we will experience all of these effects for some of us it may be none,for others it may be one or all.i feel i can identify with most of them,maybe not all of the time,on the same day .the john hopkins study went on to explain that many sepsis survivors report symptoms of post traumatic stress disorder (PTSD).and that these risks are higher for people who are admitted to intensive care.It went on....
What can be done about PSS.
post sepsis syndrome must be recognized by doctors and health care professionals so that patients can be directed to the proper resources which may include referral for emotional and psychological support,counseling,cognitive behavioral therapy or assessment for physical support such as physical therapy.
awareness seems to be key
what are your experience of PSS.
kind regards ian
Posted by Lesley-Anne on 14 April 2016 - 07:27 pm
Posted by ClareL on 01 April 2016 - 11:07 am
I am married to Marc, a man who was perfectly fit and healthy until June 2014 when he suffered from Group A streptococcus and (extremely long story short) ended up with sepsis and fighting to survive. He spent 3 months in hospital, 45 days of which were in ITU and had to recover from being put into a medically-induced coma to help him survive when all his organs were shutting down. He has since had to learn to breathe again, walk again and recovery has taken so much longer than we could ever have anticipated. We are now 21 months from his initial hospitalisation and, while things are so much better than they were, they are still far from normal.
What I find difficult is other people's assumptions that he should be better by now, and that people have no clue as to what he is and isn't capable of managing. What is a very simple task for others can be a massive challenge for him, and we are constantly re-evaluating and readjusting our lives to incorporate any difficulties he is having, while trying hard to remain as 'normal' as possible.
We have two children aged 6 and 8 who have gone through the whole process with us and most of the time are so considerate of their dad's needs. Reading some of the experiences on this site makes me wish I had been more aware of the Sepsis Trust earlier - there are so many others whose symptoms sound the same as Marc's. I have only recently begun to come to terms with what has happened to us all - I consider that we have all been affected as a family unit - and started to write about it as a way to process it all. I wondered if there were other close relatives of sepsis survivors out there who feel similar?
Posted by charlieturtle on 22 November 2015 - 04:05 pm
Posted by philman on 27 June 2015 - 12:00 pm
Yes, listen to Isabella...
It is so easy to fall into the trap of having a 'good' day and then over doing it with the consequence then having many bad days after!! I also have learned the hard way. After my initial battle with sepsis I went back to work way too soon and tried to carry on as normal... but unfortunately this doesn't work!! You need to listen to your body and get LOTS of rest. Be kind to yourself, lots of sleep, lots of relax time... getting better from sepsis takes little steps, but things will improve.
Keep safe, Phil.
Posted by Hayley's mum on 27 January 2015 - 01:16 pm
I though I would share my experience of taking posters, leaflets and information cards to professionals. I attended the North West volunteer meeting a few days ago and decided to take some publicity materials to share locally. This morning I was due for a check up at the dentist, so I took some leaflets and cards with me. I gave them to the receptionist and asked if they could discuss them at their next practice meeting. The man on reception was very interested and the people behind reception all agreed this was something they could do. I then visited my local, independent pharmacy. I took a poster for the Manchester support group meeting and the leaflets and cards. The person on the counter was very interested and said Sepsis had been mentioned in relation to her Father in Laws death, although she didn't know what it was. They were very happy to take the materials and promised to use them. I then visited the practice nurse for a screening appointment and once again gave her a poster for the support group, plus a selection of posters and leaflets. It was all much easier than I had anticipated and people seemed genuinely interested, so if you want to do a little local publicity perhaps have a go.
Posted by MarkDUK on 12 March 2017 - 07:55 pm
Posted by Palmiter on 28 February 2017 - 07:12 pm