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#75 My Thanks

Posted by Mark Sollis on 11 June 2014 - 06:46 pm

Well It's a start

 

Full story may follow

 

Attached File  Thanks to You.pdf   1.4MB   434 downloads

 

 

 

 

 


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#504 Post sepsis

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 :)


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#743 Benefits!

Posted by Leila on 12 September 2016 - 05:58 pm

Hi. To get contributions based ESA you will need to have paid enough national insurance contributions in the two tax years proceeding the current benefit year and then you will need to score 15 points on the ESA assessment. Contribution based ESA is only awarded for 12 months, unless you are assessed as qualifying for the 'support group', which is the highest award, in which case there's no time limit as long as you meet the other conditions.

You could also try applying for personal independence payments (PIP) as this is an additional benefit you can apply for as well as ESA and it is not means tested. I am currently working part time at home and have applied for PIP.

A good website for further information is 'Benefits and Work', there lots of info on there about both benefits and some practical tools to help you. You could aso check if there is a welfare rights service in your area or ring the CAB.
If you have any further questions, let me know ( my partner is a welfare rights worker and I work in a similar field).
Thanks
Leila
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#6 Mark Sollis - Thanks To All At Good Hope

Posted by Mark Sollis on 23 March 2014 - 09:02 pm

So here is my thanks to all at Good Hope

 

I'm still here because of them and hope you find comfort in knowing what the NHS can do when we are in need

 

 

http://sepsistrust.i...ages-of-thanks/

 

M

Attached Files


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#594 More awareness for surviviors

Posted by Gillianflutes on 29 May 2016 - 02:36 pm

I seem to come on this forum when things are challenging! The weather has been BEAUTIFUL this weekend so I weeded yesterday and generally did too much! Today, is still beautiful but after doing some of what I planned I am on the couch! Yet again, I find myself trying to stay positive. I know I'll come throu this as I am determined that I will!! Not sure how sometimes though. I am coming up to one year post-sepsis and although I am doing more I still have so many aches and get so drained of energy.

This week has been special. One of my daughters had identical twin girls. They are adorable! They are numbers 3 and 4 for my daughter so life is going to be interesting! These positive events are so important and help to keep me doing everything possible to get better.

Good to have you all here to share ups and downs with. Anyone from Scotland?
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#386 Recovering from sepsis

Posted by mmoo on 28 November 2015 - 07:00 pm

Hi Gillianflutes,
Take your time, and go one step at a time.
It has taken me 7 months to listen to my own advice, so I do realise it isnt that easy.
Like you, I was extremely active, healthy and on the go non stop. All this changed in May and since then it has been a long, painful uphill climb to getting back to the way I was before. Although I am still nowhere near my former self, things have improved and continue improving. What I have had to accept was to give in to the tiredness and just listen to what my body was telling me. Earlier on in this journey I couldnt do anything. My main "activity" for the day would be having a bath. Today, I am back at work part-time and this past week have just upped my number of half days worked from 4 half-days to 5 half-days. Even the addition of an extra half day has me feeling more tired than I have been. I would have laughed in the face of anyone if they had said adding a half day of work to an already meagre working week was exhausting, but there you have it. Just reading that going back to work progressively leaves you lying in bed for the whole weekend feeling exhausted and pathetic - strangely enough made me smile - been there, done that. I'm not laughing at you in any way, but am laughing at myself as I too have felt very very very pathetic at times (this very afternoon, in fact).

Are you able to work from home at all? I've been lucky enough to eliminate extra factors that exhausted me when I first went back to work, getting dressed in the morning, driving to work, walking around the building going to see different people, for me, just added to the exhaustion. I hope for your sake you can maybe try working from home a little. I really found that helped. Also, when you feel good, try not to push yourself too much. Again, I know this is terribly hard to actually listen to, but if you are still so tired on weekends maybe you are doing too much.

I hope that my message makes you feel less alone. Although I havent been on the forum in quite some time, just reading that there are people out there who understood what I was experiencing helped me enormously. I would like to think I have always been a well-balanced person, but i nthe past 7 months I have sometimes felt so alone, so lost, and so so so knackered that I often thought my weird an wonderul symptoms were because I was completely insane. Thankfully when I got in touch with the UKSepsis trust, despite living in France, I got the support and all information I needed not only to reassure me I was not totally certifiable but they also to armed me for what has turned out to be a long battle. Without the UKSepsis trust I honestly think I would have completely lost my mind.

Take each moment as it comes. Rest when you feel the need to rest, and try not to compare yourself to how you used to be. Surround yourself with peope who understand, and if there are ones who dont, simply dont let them influence you too much - you have enough of a battle on your hands.
Although I know very little of your personal battle with sepsis, I can say for myself that there was a turning point after about 6 months. I wont pretend thzt fireworks went off, but something changed. As I say, there are good days (a couple all in one go at the moment, and it is WONDERFUL), and then there are days where things are more difficult.

Take heart that although you might feel alone, you are not.

All the best and I hope things look up for you soon

Michelle
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#18 What is Sepsis?

Posted by admin on 01 April 2014 - 09:26 pm

What is sepsis?
 
Sepsis is a life threatening condition that arises when the body’s response to an infection injures its own tissues and organs. Sepsis leads to shock, multiple organ failure and death especially if not recognized early and treated promptly.
 
Sepsis is caused by the way the body responds to germs, such as bacteria, getting into your body. The infection may have started anywhere in a sufferer’s body, and may be only in one part of the body or it may be widespread. Sepsis can occur following chest or water infections, problems in the abdomen like burst ulcers, or simple skin injuries like cuts and bites.
 
Sepsis can be caused by a huge variety of different bugs, most cases being caused by common bacteria which we all come into contact with every day without them making us ill. Sometimes, though, the body responds abnormally to these infections, and causes sepsis.

 

Different types of sepsis
 
Many people can have ‘mild’ sepsis which can make them feel ill but doesn’t require treatment in hospital. Mild sepsis can result from chest infections, urine infections and other minor illnesses.
 
However, other patients develop severe sepsis, which means they become seriously ill and need hospital treatment straight away.
 
How would I know if I had sepsis?
 
If you or a loved one had a suspected infection, or certain risk factors like being very young or old, diabetic, pregnant or on long-term steroids, then you would need to know what to look for. Early signs of a ‘flu-like illness, chest infection, diarrhoea and vomiting or inability to eat and drink, together with one of the symptoms of sepsis should be taken seriously. Our Symptom Checker card gives a list of 6 symptoms to look out for.

 

symptom-checker-card1.png

 

Why does sepsis matter?
 
Sepsis is one of our biggest killers! Shocking, since so few people are aware of it, but sepsis claims 37,000 lives every year in the UK and costs the NHS £2.5 billion a year. In comparison, breast cancer claims less than 8,000 lives a year. By helping us to ensure the reliable delivery of basic sepsis care (the ‘Sepsis Six’), you can help us to save 12,500 lives every year and reduce costs by an estimated £160 million.


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#166 Loss of Oliver.

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.

 

Sarah


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#1031 Raising awareness within the NHS

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.

 

 

regards Red


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#952 Post Sepsis Syndrome

Posted by Supertractorman on 15 January 2017 - 11:03 am

Polly, I know exactly how you feel and am suffering with infections since Sepsis which have never gone away. There does not seem to be anybody in hospitals who deal with getting rid of infections after Sepsis, as I was put under Urologists who did not seem interested in infections and know I have been released from hospital before the infections were clear as they needed the beds. If each hospital had someone who had an interest in Sepsis and saw everyone who had Sepsis I am certain they could offer advice to people like ourselves on this forum.

David
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#795 More awareness for surviviors

Posted by Gillianflutes on 09 October 2016 - 06:19 pm

Hi Anna. As you will have read, there are so many of us! Not sure if that will help you right now but I want you to know that I never thought I would ever feel normal again. It took just over a year before I could say that I felt normal. My normal has changed. I was extremely fit and although I am feeling better, my fitness is nowhere near where it was. I am gradually getting back to it but most importantly I am just grateful to be here. I will have continuing hospital visits linked to my dodgy kidneys but I can cope with that. I still have a little pain but again it is manageable. My tiredness is a more normal tiredness. When the chronic fatigue was at its worst, it never seems to go and I couldn't stay off the couch or my bed for very long. Now when I feel tired, I rest and I feel better.

You will get back to a more normal life but it will be the toughest fight yet. It is a fight worth fighting though. We made it! We survived!

All the best to you. You CAN do it. Xx
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#730 New guidlines for the NHS 13th july 2016

Posted by red squirrel on 11 September 2016 - 03:16 pm

Came across this from the NICE website,proposed new guidlines for the nhs regarding sepsis,including Dr Ron Daniels of UKST,and a short vidio with stella a sepsis survivor.

 

http://www.nice.org....ttack-says-nice

 

red


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#693 What is post sepsis syndrome

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

*extreme fatigue

*poor concentration

*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


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#513 Debilitating knee pain

Posted by Palmiter on 31 March 2016 - 02:47 pm

Hi Billy!
I had a 4 month hospital stay with SEPSIS 5 years ago, and I was not left with knee pain, but overall leg pain. From what my Doctors have told me, this is probably caused by muscle inflammation due to the SEPSIS, and may or may not improve. Ironically, it occurs only when walking or standing, but never while swimming or doing "leg excercises".

As you probably know, SEPSIS can ravage the body, and the fact that we both survived, is indeed a miracle. I guess the pain is just a uncomfortable reminder of how lucky we are!

Bob
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#382 Recovering from sepsis

Posted by Galli688 on 14 November 2015 - 09:11 pm

Hi Gillianflutes

Every time I read new post it brings back memories, at the moment I am going through a really bad time with tiredness.

I am dropping off at the drop of a hat, anytime from 3.00pm onwards and can sleep for hours if I don't set my alarm and still go bed early and sleep.  I get depressed thinking there is no end to the symptoms, different ones cropping up all the time I just wish I had a magic wand. I can't walk anyway because my knees feet and everything hurts, if you hear of anything that helps please let me know. Where are you from I would love to go to one of the meetings but don't want to go alone.

 


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#310 Length of recovery? Is this normal?

Posted by Libby on 26 June 2015 - 08:28 am

Hi Michelle,

Yes, unfortunately, we would consider it perfectly normal to feel so exhausted following even a short bout of sepsis. Seven weeks is very early on in your rehabilitation from this illness. I'm glad your GP has taken it seriously though- often people just get told to 'pull themselves together' and get very little help at all. Sometimes the autonomic nervous system can be affected which can lead to palpitations, dizziness, excessive sweating, bladder control problems etc (anything which is under the body's automatic nervous control), so it would be good to get the physician to just check you over. Usually, these things settle in their own time.  Generally, you are looking at months rather than weeks.However, you should improve during that time - you just may not notice the small changes as you go along. Keeping a diary of your progress can help you see these improvements.

 

We have a 'Survivors Booklet', which you can either download from our website - under 'info for the public' or if you phone the office on 0845 606 6255 they will send you a copy.You could take it with you to show your GP. It goes  through what to expect. There's also 'A Guide for Patients and Relatives' which you and your family may find helpful. Have a look at our 'IN Touch' service as well. 

You will get there.

Take care,

Libby.


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#247 Local awareness raising

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. 

 

Anne


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#1227 after advice

Posted by Gillianflutes on 22 July 2017 - 05:03 pm

Hi, I am exactly two years post sepsis (septic shock after blocked kidney). I can now say that I am better. I am different to before e.g. I can't jump on a bike and ride 70 miles (but not many people can?!), I CAN now run a 10k (but slower than two years ago), I do have to manage my energy (but not quite so much as last year at this time). I have a 'new normal' and am comfortable with it. I am back to enjoying life. However, last year I was in a similar situation to you. I felt like I was trying sooooo hard and always taking two steps backwards for every three forwards. It was relentless and I had had enough. Like you I am against medication and rarely take any form of meds. But last year, I recognised that I was depressed and went to the doctor. I said that I would agree to a short stint on anti-depressants, as long as we had a plan and there was an end date to the medication. It was the best thing I could have done. Like you, in the past I would have seen it as a weakness, but this time I saw it as me taking control of the situation. The meds got me back to a place I felt I could fight again. It has been a very, very long difficult journey. At times I despaired of ever feeling like 'me' again, but now I can say that I DO feel like 'me'. I have always eaten a very clean diet but have become even more fastidious! Read up about Apple Cider vinegar (with the mother). I drink ACV every day now. Like you I have cut down on wheat etc and have limited my intake on dairy but I do love cheese and yoghurt so have not cut them out completely. I tried acupuncture for joint pain and that did help, but long term was expensive. Keep going! You can do it! X
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#1103 The BBC News Page online today 10th March

Posted by davegore on 10 March 2017 - 09:59 am

http://www.bbc.co.uk...health-39219765

 

good to see the word and the symptoms being spread for more people to see

 

Dave


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#1063 Recovery

Posted by Gillianflutes on 28 February 2017 - 07:04 pm

Hi Dave, I had Sepsis in July 2015 at age 53. Like you I am active (triathlete, cyclist etc etc). I don't want to depress you but I don't want to paint a rosy picture either. We are on a long path with lots of bumps along the way. Life is different and I have had to accept that it might not ever be the same as it was. Recently I decided to start creating the 'new' me, instead of harking back to the way I was and beating myself up. Not sure if that makes sense? Finding the right pace is the most difficult thing. As soon as I start to feel good I do too much. But how do you know what is too much until you try? I am back on the bike. Hills are horrendous and I am slow! My bike muscles have gone and it is going to take a long time to build them up again. I am running but again pace is slow and not running for any great length of time. It seems that if I plod (maybe more than plod) I am fine but it is when I push (I think there might be a link to adrenaline but I am not medical so don't take my word for it) something happens and that is when my body rebels and I go downhill, back to the awful heavy exhausted feeling. I have started to write a blog about my recovery. Doing it to help me see improvement (I hope!) but also to maybe help others. I have found it difficult to find anything positive/practical to read during my recovery. On the blog I share the different things I have done to help me get through the past eighteen months. I emphasise that I am not medical but I have always been a very fit, clean living person. The blog is on Wordpress and is called 'Believe!'. I write under the name ' Wisewoodwind62. All the best. Gillian
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