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Gillianflutes

Recovering from sepsis

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I am lying on the couch reading through posts trying to become more positive about my recovery. Like so many other people, I was a very fit, active person with a full time career and a full life with grown up children and two young grand children. I was told it was my fitness level (triathlons and half marathons etc) that saved me. I became ill mid-July of this year and have been signed off work since, having huge problems with fatigue. Last week I began a slow phased return to work and then spent most of the weekend sore, uncomfortable and in bed.

 

I do try to find the positive in everything and know that I needed to slow down and look after myself more. I have had time to think about what is important in life and re-think how I will approach work. However, I am finding it very difficult to gauge just what I CAN do without becoming completely washed out. Family and friends are mostly sympathetic but don't really understand just what I am feeling. Feel quite pathetic to be honest! The emotional roller coaster, in addition to the physical one, is also something I hadn't expected. I don't think I fully appreciated just how ill I was.

 

Feel a little apprehensive when I read of so many people who still don't feel 'normal' even several years down the path to recovery, but glad UK Sepsis Trust is here. I would feel even more isolated if I hadn't found it.

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I would like to add that if anyone has suggestions or experience with following a particular diet, taken particular homeopathic remedies, additional vitamins etc please share your successes and failures please! I want to look at all options to help my recovery.

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Hi Gillianflutes,

 

Thanks for your post! Welcome to the UK Sepsis Trust forum. I have found this forum and a few facebook groups helpful on my journey post sepsis. I am 2 years out now - and yes I know you don't want to read this, but I am still struggling unfortunately. Similar to yourself, I have been told that I survived because I was a very fit and healthy bloke. I remember reading these posts saying at least 18 months to 2 years before you feel anywhere near better and thinking - no not me, I am young and fit and will get better much quicker! But, it seems that it is a slow recovery after all. Frustrating to say the least!! On the positive side though - I do have many more 'good' days now where I feel like I have energy and almost 'normal'. But I do find that just when I think I have cracked it and maybe I am better, then I will have a run of bad days feeling naff. I think a lot of it is to do with how much rest you give yourself - rather than try to carry on like nothing happened! I am struggling at the moment due to lack of sleep I think as we now have our 3rd child who is 7 months old but has some bowel issues due to being 6 weeks early - so sleep deprivation is taking it's toll on my already weakened body. So, my advice is to stay positive - look after yourself and be kind to your body, don't overdo things - you will get better than you are feeling now for sure!! When I think back to how ill I was in the months following sepsis, I realise I have come a long way :-) Keep safe...

 

Phil.

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Thank you Phil. I am coming round to the fact that my 'normal' is possibly going to be different. You're right that the good days are beginning to be more frequent than the bad days. Am also getting a bit better at resting and planning my days. Honesty is best in the end and hearing that it is going to take a long time helps prepare me for the reality, instead of expecting things to get much better quicker. Being in contact with other people who have been through it is going to help, I think.

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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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I am in Aberdeenshire. There are no support groups here, I have been searching for one but this online group is the only thing I have found. Things have picked up over recent days. I am on a phased return to work and it has gone much better this week. Because I was feeling so good I did more than I should on Friday and have paid for it over the weekend. It is a reminder that I am definitely not out of the woods yet, but I do feel there has been progress. I am also getting better at gauging how much I can do and better at saying 'No' to things. Life is different from what it was before but I remain positive that, if I take care, it will get closer to normal in time. I am using 'Mindfulness' and am also now looking into acupuncture to help with the fatigue. I have always led a healthy life with a good diet etc so I need to look at other things that could help. All the best in your journey. It is good to know other people are out there going through the same sort of challenges.

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Hi everyone, reading what everyone is going through has given meaning to the way I have felt these last few years.i never had an explanation to why I have been feeling this way. Every day feeling like I will never be normal again, I feel so down knowing I am letting my family down, not being able to be the mum and wife I should be, feeling useless and a moaning all the time burden.is this it? Is this how my body will be now? You guys are so optimistic and hopeful.you are an inspiration. Thank you, I would love to hear how everyone came to this point and the struggles you are all overcoming.

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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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Charlieturtle - I aim to be positive but this is an emotional and physical roller coaster and I do experience lows. This weekend started with a huge dip. My phased return to work included five 1/2 days this week. However, one of my daughters (age 25) ended up in hospital this week with her asthma and I took responsibility for her three year old, who is a delight but it still meant I was on the go more than expected. I did not take her 16 month old who is non-stop!! Another family member stepped in. So I did five 1/2 days and dotted back and forth to nursery in between! Friday night was the running club night out. I only mention this because I now think this did not help my 'dip' (I was very tired anyway but am trying to be sociable when I can). Everyone was happy to see me and meant well but all of them asked if I was back running and how was I? Looking back, I think having to constantly say that 'No, I am not back to running and am not sure when that will happen', time and time again really got to me. Spent all Saturday in bed until late afternoon. Have done a bit more today and after a Reiki session with friends I feel on a more even keel again. Not sure I would be if I still had younger kids as I do have to sit a lot at home. It is so good to be able to 'talk' to people on this forum. People don't understand that we can look 'normal' but inside feel rubbish! Being in here means we can pick each other up when needed!

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Michelle - I had to check that I hadn't written your post!! It all sounds so similar. As you can read above I dipped a bit this weekend but last week I did feel I had turned some sort of corner. Can't pinpoint exactly what is/was different but one thing is that I think I am recovering quicker from my debilitating fatigue (as long as I go to bed for a decent amount of time).

 

I am a head teacher of a primary school, so although I can work at home, it has been important for people to see that I am on my way back, so I have been going into school. I definitely did more than my body is ready for last week and am looking at how to manage things better this week.

 

On the whole, I have accepted my 'old' life might not return for a long time, if at all. But every so often, probably when I am very tired, the emotion bubbles to the surface and I get sad about it. Am known to be a very strong person (in all ways) so this vulnerable feeling is new and doesn't always sit very comfortably with me!

 

As I said, everything you have written above rang true with me. Being able to 'chat' to people going through the same challenge is helping so much. It has been such a huge learning experience.

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Positive update! I feel like I turned a corner this week. I don't seem to be getting the fatigue to the same level and when I do feel like I am dipping I seem to be recovering quicker. I have also been able to complete two weeks of five 1/2 days at work. I am also following a rehab programme building strength and fitness. This is also helping me physically and psychologically. There really is maybe a light at the end of the tunnel?!

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That's encouraging to hear!  Nature takes its course and sometimes, it seems, is in no particular hurry.  Of course with something as severe as sepsis, it must inevitably be a slow road to recovery.  I haven't worked in 9 months now, with the added complication of oedema, and it looks like I might not return until a year has elapsed, but things are progressing.  Keep at it !

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Nature has slapped me down this weekend! Probably done too much this week so was washed out anyway and a virus has made sure that I have been unable to raise my head today. A reminder that it is a long road and I have a bit to go yet. Have also been going for acupuncture which I feel has helped energy levels. Fingers crossed this virus doesn't stay for too long.

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Hi Guys ,

I am now 3+ years on from my little adventure with sepsis and unlike some I wasn't at my peak of finess , in fact I had an operation on 3 of my lower discs in 2011 and was told my back resembled that of a 90 year old - I was 56 at the time  of my sespsis in 2012 . I suffered multiple organ failure including cardiac arrest - the Doctors at Paisley told my Family to ' prepare for the worst ' - I was hooked up to a Life Support Machine and was receiving dialysis .

Anyway , here I am , still smiling .

It took me around 6-8 months to get walking again [ I still walk with sticks ] but it was the experience of ' terror dreams ' which affected me most and that took me around 2-3 years to get over them fully though I do think of them today . I wasn't aware of anything until I woke up 3 weeks later , my wife and the Doctors kept the full story away from me for months which I'm grateful for .

Rest and a good diet with some exercise is the way forward , chaps , nothing is more important than getting better .

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I have had the unfortunate fact that I have had severe sepsis twice, long ICU stays and long recovery times. I had a lot of PTSD and was diagnosed with PICS (Post Intensive Care Syndrome). 3 years on I can only suggest you seek help from your GP. I was delirious and hallucinating and had terrible paranoia (thinking the nurses were out to kill me). I had just been woken up from an induced coma whilst being on a ventilator for a month. I had terrible nightmares and flashbacks for 2 years but I would say I am on the mend now. Take care OP and everyone else. Edward

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I have had the unfortunate fact that I have had severe sepsis twice, long ICU stays and long recovery times. I had a lot of PTSD and was diagnosed with PICS (Post Intensive Care Syndrome). 3 years on I can only suggest you seek help from your GP. I was delirious and hallucinating and had terrible paranoia (thinking the nurses were out to kill me). I had just been woken up from an induced coma whilst being on a ventilator for a month. I had terrible nightmares and flashbacks for 2 years but I would say I am on the mend now. Take care OP and everyone else. Edward

 

 Hi Eddie [ and Everyone else ] - I was treated for sepsis again back in November 2016 though this was nothing like my 2012/2013 episode - 

My terror dreams involved being restrained , kept prisoner ,  being drugged  and sexually assaulted . When I was eventually transferred to a room of my own in Ward 1 of the Royal Alexandra , Paisley I asked my Consultant whether my sepsis could have been as a result of this assault !

I was so ashamed of this experience that I couldn't tell my wife about it until I came home from hospital . The reality of it was I needed to be restrained by two nurses as I was pulling out the tubes keeping me alive - I was probably given an enema or something to help me go to the toilet [ hence the sexual assault dream ] - the thing is these dreams are nothing like ordinary dreams , we live them like they were reality - there was a lot more to my dreaming that I won't bother or bore  you with now , but they affected me badly when I returned home - I eventually agreed to see a psychologist but she didn't help me at all , how can someone prevent you from recalling a nightmare ? Only time and writing down my experiences helped me - I wrote them down on a football forum , even to Ebay members I had bought items from [ they must have thought I was a real weirdo ] .

 Whilst on the Life Support Machine I ' died ' long enough for the ICU Nurse to phone my wife to tell her I'd passed away only for my heart to re-start [ either by itself or by defibrillator - I honestly don't know ] as a result upon returning home I thought about dying and death a lot , I had guilty thoughts about surviving - I worry about things now , and even when I stop worrying I move on to another worry , all this happens before I'm about to drop off to sleep so I lay awake a lot . I can't cope very well with every day problems either when before I could .

Still alive though .

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Hi there.

 

You are certainly not alone in your dreams , thoughts or worries.

 

I was in ICU with sepsis and once I was transferred to an acute ward I had a visit from an ICU person to ask me questions about dreams and thoughts. Apparently it can be quite common after being sedated/intubated. They were awful dreams, being chased by animals and mauled some you couldn't even make sense of.

Another of all my family lined down a store escalator but were angels surrounded by chandeliers.

 

Thoughts of feeling guilty because although we are alive our minds are thinking dying. As soon as I could I wanted to get my will sorted and everything done. Maybe that's a process you go through. I don't know.

Doesn't that sound morbid when I have been told so many times at least you are here. Without knowing, each day takes a step forward even though we feel we are going backwards .

I think we are all amazing...well done ...  say that especially on the low times .. I have come a long way now and so will you. Hard I now.

 

We both and many others were on that brink that I was told our body very slowly recovers but our brain does not keep up that same pace.

 

I have PTSD but with 18 months of help and writing down things, which really helps... I do find night is the worst time because suddenly there is time to THINK and over think....well I do. I wish there was a group in the south for us to talk about these things but thank goodness for this site. I have been so lucky to get so much help with the medical side but unless you are post sepsis no one can understand. 

 

I have probably ranted on but just wanted you to know we understand and care very much.

 

Isabel

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Just to add to the "dream" theme - I think I must have at least one book's worth in my memory locker. Possibly due to the 9 weeks of coma - so maybe the timeline allowed "more" than my fair share of dreamworld living. I think I went chronologically from 1920 -ish to 2050 - so plenty of material there!

 

From reading all the posts on here I (again) seem to have not to have had such an horrendous time under the influence - but some were harrowing - including 2 episodes (chapters?) of assault and being "loaned" out of a night time to unscrupulous film makers.(which obviously "explained" why I was always run-down every day). But this was offset by some very weird 70s style Playboy / lighthearted view of the film industry as well. Thankfully (mostly) all comical now in retrospect - but like everyone here - it's been a long road to realise the non-reality of the situations I found myself living in and I understand how more horrific nightmares / terrors can leave mental scars and how we all really "lived" those times - and still do...

 

For all of you still reliving those moments, I feel for you as I felt the same way for many years. What I found though - as with any dream - they do fade over time. So keep focusing on the living moments, the " now" - and see the past for what it was. A moment in time that was "unreal" - and just part of the battle you are now winning.

 

Maybe one day there will be a book or two in Amazon with our collective experiences. But who would believe the fantasies we had were our life for a short while!!? Who would believe in personal flying "saucers" that followed us wherever we went and carried drinks and stuff and provided shade in the sun? Oh yeah - I think they are called drones now .... No such thing in 2008 ...

 

Stay safe and look forward. There's a reason why the rear view mirror is smaller than the windscreen :)

 

M

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Hi Eddie [ and Everyone else ] - I was treated for sepsis again back in November 2016 though this was nothing like my 2012/2013 episode - 

My terror dreams involved being restrained , kept prisoner ,  being drugged  and sexually assaulted . When I was eventually transferred to a room of my own in Ward 1 of the Royal Alexandra , Paisley I asked my Consultant whether my sepsis could have been as a result of this assault !

I was so ashamed of this experience that I couldn't tell my wife about it until I came home from hospital . The reality of it was I needed to be restrained by two nurses as I was pulling out the tubes keeping me alive - I was probably given an enema or something to help me go to the toilet [ hence the sexual assault dream ] - the thing is these dreams are nothing like ordinary dreams , we live them like they were reality - there was a lot more to my dreaming that I won't bother or bore  you with now , but they affected me badly when I returned home - I eventually agreed to see a psychologist but she didn't help me at all , how can someone prevent you from recalling a nightmare ? Only time and writing down my experiences helped me - I wrote them down on a football forum , even to Ebay members I had bought items from [ they must have thought I was a real weirdo ] .

 Whilst on the Life Support Machine I ' died ' long enough for the ICU Nurse to phone my wife to tell her I'd passed away only for my heart to re-start [ either by itself or by defibrillator - I honestly don't know ] as a result upon returning home I thought about dying and death a lot , I had guilty thoughts about surviving - I worry about things now , and even when I stop worrying I move on to another worry , all this happens before I'm about to drop off to sleep so I lay awake a lot . I can't cope very well with every day problems either when before I could .

Still alive though .

What a coincidence - the RAH, I now get bad vibes going there lol. I was on Ward 26 then HDU first sepsis admission. Second sepsis event HDU then ICU. Yes - I can relate to the hallucinations and psychosis, severe sepsis can cause delirium. I was put in an induced coma for roughly 3 and a half weeks so I could be ventilated. On being wakened from the coma I was utterly delirious for days and they kept me in ICU until my faculties returned. What happened in hospital is still a jigsaw of memories (most accurate information came from nurses and my relatives). Hope you get better.

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    Hi Eddie ,

Thanks for your message - I was around 3 weeks and a few days in a coma too - I was also delirious for a week , my wife thought i was brain damaged as the Doctors had told her I would be - after a week though I came round properly , I couldn't talk though because of the tubes that had been keeping me alive so my family held up an alphabet card . 

It's been 5 years now since I came out of hospital , apart from having my gallbladder removed and a few minor injuries due to falls [ my right leg is currently bandaged up after gashing it badly through a fall ] I'm doing ok physically , mentally , not so good , I'm working on it though , so I'm sure I'll get there . I guess if we can survive sepsis we can survive a few mental health problems .

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Hi


I am new to the forum, and its comforting and an inspiration to here


your stories, I too was fit and healthy but had to have an emergency


Operation, and contracted Sepsis.


I would like to here from anyone that is experiencing some of the


Symptom’s that I have at this present time.


I have been out of hospital some 5 weeks now after spending 7 weeks


In, 6 days of which was in ICU, I’m suffering was dizziness and can not


Concentrate on reading or TV, my kidneys are still not functioning


Properly, but my consultant is optimistic that they will improve.


I also sleep during the day and all night, but I believe this to be normal.


Sorry because of the dizziness I can’t spend much time on the PC.


Thankyou


Wendy

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Hi Eddie ,

Thanks for your message - I was around 3 weeks and a few days in a coma too - I was also delirious for a week , my wife thought i was brain damaged as the Doctors had told her I would be - after a week though I came round properly , I couldn't talk though because of the tubes that had been keeping me alive so my family held up an alphabet card . 

It's been 5 years now since I came out of hospital , apart from having my gallbladder removed and a few minor injuries due to falls [ my right leg is currently bandaged up after gashing it badly through a fall ] I'm doing ok physically , mentally , not so good , I'm working on it though , so I'm sure I'll get there . I guess if we can survive sepsis we can survive a few mental health problems .

Anyone who has to go through our experiences do get mental health issues like PTSD and Depression Post-Discharge. I’ve now moved on and don’t have many flashbacks etc anymore. Paradoxically I now have very little anxiety after escaping death twice and have a stronger personality now. Our experiences are similar in ICU, my family thought I was brain damaged too, but delirium was the cause and when you’re anaesthetatised for nearly a month your brain is not going to jump start just like that, it takes up to a week to normalise. Stay safe and best wishes.

 

Edward

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Hi

I am new to the forum, and its comforting and an inspiration to here

your stories, I too was fit and healthy but had to have an emergency

Operation, and contracted Sepsis.

I would like to here from anyone that is experiencing some of the

Symptom’s that I have at this present time.

I have been out of hospital some 5 weeks now after spending 7 weeks

In, 6 days of which was in ICU, I’m suffering was dizziness and can not

Concentrate on reading or TV, my kidneys are still not functioning

Properly, but my consultant is optimistic that they will improve.

I also sleep during the day and all night, but I believe this to be normal.

Sorry because of the dizziness I can’t spend much time on the PC.

Thankyou

Wendy

Yes cognitive impairment is extremely common after what you went through. I still have concentration issues and go “blank” searching for words to find and not being able to spell simple words sometimes. I would say I am not as sharp as I used to be. Best wishes and a speedy recovery.

 

Edward

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  Hi Wendy ,

Have you spoken to your GP about the dizziness you're suffering , it could be anything , could be low blood sugar levels [ I've suffered from this ] , low blood pressure [ might be an idea to get yours checked ] and some medications can cause dizziness [ blood pressure tablets caused dizziness in me ] - as for not being able to concentrate on reading , well , you've been through a lot and recovery can take weeks even months - try to eat healthily and get plenty of rest but do see your GP about the dizziness .

 

Peter .

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         Edward - I mentioned my memory problem to my GP - I forget certain words , people's names etc , I forget appointments , it got so that I now write a lot of things I have to do in a notepad that I keep by my side .

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