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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   382 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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#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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#995 Post Sepsis Syndrome

Posted by Supertractorman on 07 February 2017 - 11:25 am

Last year I became involved with the local hospital Patient Bank Programme where we role play or display our own conditions to student doctors, nurses and pharmacists, for their training courses. When speaking with them I like to raise my experiences of Sepsis in the hope they are made more aware of the condition and what to look for.  I believe many teaching hospitals are starting programmes like this nowadays and it is nice to help the youngsters in their career.


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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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#727 Sepsis Mandatory Protocol

Posted by red squirrel on 11 September 2016 - 12:18 am

hi mark,having a mandatory sepsis protocol would be a great step forward,there are already existing protocols on other conditions,to enact another for such a serious condition would save many more lives (and money too),even including information on sepsis with discharge notes could i believe have an immediate effect on some patient outcomes,a part of this issue is patient re-admissions,its quite hard to find decent stats on numbers and when you do its full of caveats,but its a growing problem ,According to the NICE website about 350k patients are re admitted within 30 days of discharge,but this info is then filtered down into various subgroups with no number regarding sepsis, even these numbers change when a hospital is part of a larger trust,but this is known problem and hospitals are fined for patient re-admission,but its not really a fine as such they are instead not paid for whatever treatment is required on re-admission,I think people could be saved at the front door when they arrive with some basic tests and at the back when they are discharged with some basic information.

You have mentioned bureaucracy and whilst mindful that this may be going of topic i must mention my  great water dispenser battle,back in 2012 whilst attending a pre-op i wanted some water but is was broken with an old bit of cardboard explaining that,i asked a nurse she said oh yes we know about that,2013 same...with same bit of cardboard,this was depressing so i photographed it and reported it to PALS, fast forward 2014 same bit of cardboard,still broken,my hospital now runs  patient led assessment teams ,who go in and with others advise where the hospital they could improve service to patients,so i joined,unfortunately my team did not assess the pre-op part of the hospital but we went to other wards and departments,and in one of these departments there was a broken water dispenser with a sign,i asked the nurse how long it had been like that and she said before i moved here two years ago and she had reported it also,

Trying to effect any kind of change with the nhs is difficult even for those on the inside....other issues were also noted and hopefully acted on.but its a slow process

Reading these posts has reminded me to do what i can to get the message out there,so i will take some leaflets with me  to the doctors next week and  to the hospital in october and see what kind of response i get.

i missed the WSC16 is there somewhere on youtube i might find it?

 

kind regards red


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#604 One year later

Posted by philman on 30 May 2016 - 02:20 pm

Hi Michelle,

Just a quick post to reassure you that you are firstly, you are doing great - well done for battling on and getting back to work (although it sounds, like many here, you are finding you need to not over-do it!!), and secondly, yes you are going through the same draining fatigue among many other other symptoms that many of us are learning to live with and it seems to be normal for us survivors. Hang in there!! I am about 2.5 years out from Sepsis. I work 3 days a week as a music therapist and 2 days from home on my own business as a graphic designer, and to be honest the 2 days at home since sepsis have been rest days really and my business has suffered. However 2.5 years has seen some improvements, the fatigue can still really smash me, but it happens less often. I have learnt and am still learning to pace myself more (very frustrating!!). Still get leg pains etc and various other pains in my body. Still vitamin d deficient since sepsis. Have found that making sure I drink enough water daily does help. Used to be very fit prior to sepsis, and am frustrated that I have put on some weight over these 2.5 years as I can't (or am too afraid) to exercise like I used to. I would love to get running again, but fear that I may need time of work if i try!! One day - hopefully!! Anyhow, things are improving - but it is a slow process - be kind to yourself. If you have read any of my posts you may have seen that is took me a whole year before I had the energy to walk my kids to school - about a 10 min walk. Now I have no trouble with this :-) Like you are finding, there is very little support for us survivors, this forum is great, and a couple of facebook ones are good too, the NHS don't seem to have many answers and just put most of it down to chronic fatigue or post infection fatigue and say "there is no magic pill". I hope to get along to one of the UK sepsis trust support groups soon as i think it would be good to meet with others who understand what we are struggling with etc. But please remain positive - I hope this post doesnt come across as negative, yes I still struggle with health - but it is improving as the years pass. Stay hopeful, look after yourself, all the best...

Phil.


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#522 Relatives of sepsis survivors

Posted by Palmiter on 01 April 2016 - 03:09 pm

Hi Clare,
Very often people who do not WHAT Sepsis is, also fail to understand the long term effects of it. I had Sepsis 5 years ago and still walk as if I have had "one too many!". Friends and even family mistakenly view Sepsis as a period of severe illness that you eventually "get over". But as you know, that is indeed not the case. This, of course, leads others to believe you are starving for attention and sympathy, and assume you are emotionally weak and insecure. At this point in my life, I'm just happy to be alive and the unwarranted comments from others just go into my "ho hum" box.

It will get better.

Bob
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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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#42 Support

Posted by Balley77 on 01 June 2014 - 11:32 am

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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#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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#308 Length of recovery? Is this normal?

Posted by philman on 25 June 2015 - 08:50 pm

Hi Michelle, if you have a search through the forum you will see my story. I too didn't end up in ICU... well I was never even admitted - just sent home with oral antibiotics!! Since then I have been told by a couple of medical professionals that I am lucky I didn't die at home and it is only because I was a very fit and healthy chap that I survived. Sepsis, as I have found and am still finding wreeks havok with your body!! During the weeks that followed me ending up at A&E (ER) I have never been so ill in my life - I couldn't walk for about 6 weeks (my legs felt like they were not attached), excruciating pains all over my body etc too... my chest hair turned grey within the space of a week!! The sepsis effected my Pancreas, so I had pancreatitis which was like having someone stabbing me inside my chest, and also and inflamed appendix!! Probably more things too - but just to say life does improve - but at a frustratingly slow pace unfortunately. This November it will be 2 years from when I got sepsis, and I am still not 100%. My vitamin D is low so I have recently been prescribed Vit D and Calcium tabs from the dr, I still have all manner of aches and pains (i find stretching helps), still get fatigued, wierd flushed feelings... I could go on. It took me a whole year before I had the energy to walk my kids to school - this was really hard to take and frustrating as before sepsis I used to jog every night with the dog and was very fit doing other sports etc. I know this probably isn't what you want to hear - and hopefully recovery will be quicker for you, but I remember being in your position weeks after sepsis reading forums thinking 'surely it won't take me that long to get better'... it seems I was wrong. Unfortunately the NHS and it seems other health services around the world don't fully realise the after effects of having sepsis and what a tough and long process recovery really is. I to am 38. I have and wife and 3 young boys, and I always remind myself when feeling naff that I need to be greatful that I am still here for them. I long for the day when I feel full of energy and well, I hope you find that place soon too. All the best, stay positive, look after yourself, and keep in touch with us on the forum. Cheers, Phil.


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#163 Loss of Oliver.

Posted by lyndsey7513@yahoo.co.uk on 05 September 2014 - 08:33 am

Hi Terry,

 

I am so sorry to hear about your great loss. This is really bad. The hospitals struggle to detect sepsis it seems. I am a sepsis survivor, I had sepsis in April this year, mine started as a viral infection, then within 2 weeks had turned in to double pneumonia and sepsis, the hospital A & E Department, failed to recognise I had sepsis and released me after 1 hour, I was told my the A & E Doctor to stop worrying and just relax, she failed to spot my prurple rash on my face which I pointed out to her, my heart rate was up, my blood pressure low, I had all the signs of sepsis on that day I went to A & E, I could not stand up, this was on the Friday day, they performed an X ray, which she told me was clear, gave me anti bitoics and sent me home. It turned out I had pneumonia on the Friday and sepsis, I went home I was severely tired, no appetite at all, not really drinking as such apart from taking medication. I was vomitting bile.

 

Consequently, the next day on Saturday by lunchtime I couldnt walk I was in a deep sleep, not drinking, severly dehydrated, my mother was over that day and called an ambulance as I became unresponsive completely, couldnt move, Paramedic came, he spotted sepsis immediately, which the doctor failed to recognise the previous day, my heart rate was very high, I was tachycardic, could have arrested at any time apparently, he couldnt get an IV line in, my blood had started to coagulate in arms, they rushed me into resus, where doctors were waiting for me, within 20 minutes they had an IV line in my arm, bloods were taken straight away for cultures, an x ray was performed straight away and revealed I had severe pneumonia, the doctors were talking and saying that I should not have been released the day before and was very lucky to respond to the anti bitoics, I was on a heart monitor all night and blood pressure was very low, but monitored every half an hour, I was placed in an acute ward and constantly monitored. My body like your son's was very swollen all over, severe rash,temperasture of 104 degrees, struggling to breathe etc.

 

I was in hospital for 4 days, then released with a lot of antibiotics. To cut a long story short. I did lodge a complaint against the hospital and the doctor that treated me. I have had my complaints meeting with hospital Consultants and clinical director in July this year, I went into the meeting armed with research from British Medical Journal, to which they could not argue with, I can honestly say, that the Consultant over A & E and clinical director admitted I had sepsis on the Friday when released home, they also stated that I was very lucky to be alive the following day, they admitted negligence in front of my son & myself, which was a victory to me. I have since had all of this in writing from the hospital and signed by chief executive of the hospital.

 

Since my case had been discussed at the hospital big meetings they have with all departments, they have now rolled out training now across the hospital with all departments raising awareness of sepsis and used me as their case study, I have had apologies from Consultants in person and stated they had failed me. It is not very often that hospitals admit in person and in writing that they were wrong. I now have lung problems now in my right lung and my lung has collapsed and struggle to breathe and get very out of breathe now, compromising my health now, but I am alive and very grateful but feel anger also as I was a very healthy 45 year old.

 

Also, the Doctor who treated my and failed to diagnose sepsis, turns out to be Romanian,I asked the Consultants where she had done her medical training and it was in Romania not in the UK which I am not a predujiced person, however the hospital have now sent her for re training over at University Hospital in a large City, which I will not name for libel or legal reasons or even state which hospital this was at, apart from it was in the West Midlands area.

 

My advice would be question, question, question, the hospitals as to why this was not detected earlier as you need those answers otherwise you will not heal emotionally until you have those answers, my thoughts are with you at this difficult time and your family and you will get a lot of help and support on this site from survivors but also from people who have lost love ones, I read a post the other night on here about a little girl who died, when I read it I was in tears they would not stop and I have tears in my eyes from your story too.. But ultimately, there needs to be more awareness of this silent killer and I will do what I can to raise this awareness. Feel free to contact me if you need any more advice. Take care.

 

Lyndsey x

 

 


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#1115 Sepsis Support Groups

Posted by MarkDUK on 12 March 2017 - 07:55 pm

Thank you to everyone who came to our meet up in York today, with special thanks to Larry for making the journey t'north.
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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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