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More awareness for surviviors

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Hi I am getting really fed up with living with the pain and tiredness caused from Sepsis. When I go to any medical professional ie:- gp, physio, pain clinic they think it is just it's after math of tramatic birth. People who I come into contact with on a day to day basis ask why am I still limping and in pain when I should surely be better now. People need to be made aware that it takes time to heal as our bodies have been through so much. I am feeling very low and frustrated, while looking after two kids with very little sleep it is so hard to get rest. I used to be so active and feel I am never going to get to the old me again.

 More support after hospital would be benifit recovery. I find this forum so helpful as I feel I am not on my own with this and confirms the importances of awareness.

Debbie

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I am sorry Debbie, I know how hard it is. It took a year for me to get rid of the pain, but I still get tired easily. Yes, it feels there is no heeling support or advice, feels like you on your own here.

But you will get better, hang in there, it's a hard patch in your life and you going to beat it, because you already beat a horrible illness! 

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more awareness is needed generally i feel , i recently went for a ct scan and when i explained about recovering from septic shock the nurse said " your not old enough to have had that" ( i am 42 ), i feel there is alot of misunderstanding about this condition i am only 4 weeks post sepsis and still in a great deal of pain hence the ct scan, i wish you well Debbie as i know how hard it is without having to look after little ones, i wish you all the best x

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It is a long road that we are travelling. I recently started taking anti-depressants as I felt I was spiralling downwards. The medication has really helped and I feel more normal than I have in months. I have always used exercise to balance any ups and downs and as I have been unable to exercise it has all built up. Over the past few weeks I have begun to walk more and I have been out on my bike. I don't plan on being in meds for long but if it is what I need to get me back on track then it has been positive. Never in my life did I think I would ask a doctor for anti-depressants! I have also been practising mindfulness and yoga, which helps a lot.

 

This forum is the one place I feel that people have an understanding of what I might be going through. We need to keep each other positive! Be kind to ourselves and appreciate what our bodies have gone through.

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I agree Gillian this group has helped me understand more about sepsis, you shouldn't feel bad about the anti depressants as we all need some help at times, we can all support each other at times when others don't really understand our journeys x

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I agree this forum is a positive place for us all to get together and yes you shouldn't feel bad about antidepessants. I am having counsilling for post tramatic stress disorder a year on. I am in so much pain a year on but it is better than it was. Your doing so well walking and riding a bike as I was on a mobility scooter for 4 months after sepsis as I couldn't walk. Your doing get Gillian.

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Debbie - I understand how you feel about people thinking you should be better after a period of time. I have found very few people who know what sepsis is and its only when I explain in detail that they understand. I dont know how old your children are but do you have anyone who could watch them for an hour a day to let you have a nap? I agree that more support after hospital would be good. The Sepsis Trust has been my main information source and I think it helps that we can chat on the forum. I hope your health starts to improve soon x

Lesley-Anne

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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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Hi my name is Anna I am 57.

I was very ill & tried to get an ambulance, which took 6 hours to arrive

In hospital I was diagnosed with gastro enteritis, although I felt really bad & with a lot of pain in my back

I was sent home after being given a saline drip

With 12 hours my condition deteriorated

 

I was taken directly to resus where I spent about 4 hours while they stabilised me

I had pneumonia & septic shock, my family were told I was having kidney & heart failure & that I had a 50/50 chance of surviving

 

I was conscious through most of this, I was then taken to ITU where I spent 9 days.

It was one of the worst experiences of my life, including being in a car accident where I sustained severe hand injuries & loss of fingers, when I was younger.

 

I am grateful for all the help I received & I am back home now.

 

But I am suffering from depression, feeling vulnerable & I think I have survivor guilt when I read about young people who do not make it.

 

It has turned my life upside down, at my local hospital & gps I have been distributing leaflets & cards I got from the sepsis trust speaking to doctors, & healthcare workers.

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Hi my name is Anna I am 57.

I was very ill & tried to get an ambulance, which took 6 hours to arrive

In hospital I was diagnosed with gastro enteritis, although I felt really bad & with a lot of pain in my back

I was sent home after being given a saline drip

With 12 hours my condition deteriorated

 

I was taken directly to resus where I spent about 4 hours while they stabilised me

I had pneumonia & septic shock, my family were told I was having kidney & heart failure & that I had a 50/50 chance of surviving

 

I was conscious through most of this, I was then taken to ITU where I spent 9 days.

It was one of the worst experiences of my life, including being in a car accident where I sustained severe hand injuries & loss of fingers, when I was younger.

 

I am grateful for all the help I received & I am back home now.

 

But I am suffering from depression, feeling vulnerable & I think I have survivor guilt when I read about young people who do not make it.

 

It has turned my life upside down, at my local hospital & gps I have been distributing leaflets & cards I got from the sepsis trust speaking to doctors, & healthcare workers.

Hello Anna57 and welcome to the forum,it can take along time to come to terms with the effects of sepsis,theres the recovery from the physical and then the physiological,recovery varies and seems dependent on many issues,but its important to remember your not alone,many on here write about the same issues.

You have been through alot and this is going to take time.its something that totally shocked me as i thought i would be over it in a matter of months,so for me its been a learning process too.

Be very kind to yourself,rest as much as you need,read up on sepsis PSS, PTSD, but only when you feel up to it,theres lots to be gained by just reading around the forum,the nurses on here are great and you could phone the office 0800 389 6255.

One of the things i have found very helpful is a course of counseling,your GP may be able to help with that.

Its important not to bottle this stuff up and start thinking that we are in some way at fault for not dealing with this better,your actually doing really well and its important to remember that also.

 

kind regards Red

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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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My story began with a simple lower urinary tract infection after a week on antibiotics the infection had not cleared and spread upwards to my kidneys, my GP placed me on a further course of antibiotics and sent me home with the clear instruction that if things got worse I was to go to A&E, by wednesday I was not improving and that was when it began the cold sweats, shivering, sickness, a temperature that was very high, a heart beat that felt like it was going to make my already pounding head explode. By 10:00am i was not in a good place NHS 111 advised i go and see my GP again so i did my usual stubborn thing got another glass of water wrapped up warm to stop the shivering and took another antibiotic only after that antibiotic came back up did i really start to go down hill i thought i was about to oass out so shoes on and the next thing i remember was being in A&E being asked why i was there and then being rushed very quickly to resuscitation. After 5 hours in resus i was still rather confused and my head was spinning but i was otherwise in a stable condition enough to be moved to a ward where i spent the next three days on antibiotic and painkiller drips. I had a what would be called a brush with sepsis however the doctor said that had i gone back to bed i wouldn't be writing this post today. I am still being effected by some things such as my eyesight in low level light is very poor, my weight has dropped substantially and I'm not even in the mood to eat enough to put it back on, I'm struggling to walk long distances or stand up for lengthy periods of time, i have to catheterise my self and im scared that it will come back if i get another infection and i do not want to go through any of what happened over the last week again and i get confused very easily which frustrates me.

 

I don't feel as if my doctor warned me enough of the dangers of what happens or give me enough of the warning signs that things might be going bad, he told me my kidneys might go bad but never warned me once about sepsis.

 

I got lucky this time but others might not be so lucky GPs need to warn more about the dangers of this and hand out better literature. While the support in hospital was great and I'm thankful for all the healthcare professionals i came in contact with, Post sepsis support has been non existent apart from a two week course antibiotics and that if anything shows signs of coming back i should come straight back in.  

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Hello downeyd10  and welcome to the forum like you i arrived at sepsis via what i thought was a kidney infection post surgical i was also on antibiotics, so i can understand your concerns.iv had lots of infections prior and was worried that i had built up some resistance to them so i asked lots of questions about this.they explained to me about the different levels of antibiotics and that my body had been overwhelmed with infection and was infact attacking itself.after discharge i spoke to my gp  he advised that there was no reason my normal antis would not work in the future....but to be vigilant and get myself to AandE should i feel it was different.since then iv had at least five UTIs all treated successfully with my normal antis,but that did.nt stop me being scared when the first couple of infections came.

self catheterization is no joke and its so important you keep up all the good habits you have learned ,everything has to be super clean ,washing hands before and after checking for kinks in the pipe and looking for blood or debris in the bag and so on,but i am no medic and there are nurses on here who could advise much better than i on these matters 0800 389 6255.But it is so important to come down hard on infections like the hammer of thor,please dont try and tough it out with a blanket and water..thats exactly what i did..seek help

Your  right raising awareness is key its something the trust and many on here and outside are trying to do in all kinds of ways,but its a slow process,but it is happening theres an article on here about sepsis being treated the same as a heart attack when presenting at hospital,thats a breakthrough.

Its taken me alot longer to make some recovery from sepsis that i thought,when i first read on the forum about how long this might take i thought nah not me...but i was wrong,recovery can be a painfully slow process.with setbacks,iv come to terms with that now,for the first few months i felt as though i had been hit by a train could hardly move from the sofa.but last week i went for my first long walk {9 miles) it was like a marathon for me,and something i didnt think i could ever do again.

its not been long since you were discharged yourself,its very early days,give yourself the time you need,be good to yourself.

Great to see you posting so soon.

 

 

kind regards Red

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