JULIE CARMAN reacted to Isabel in How can i keep going
I am sorry for my delay. I have emailed Larry today as I've been having painful times. I haven't looked into NLP yet. But once I have had hand op pre assessment June 5th I can look into it.
Bournemouth is only about 10 minutes away but I did think maybe Bristol was my nearest one. I can see your logic in saying how much better I would need to be to do anything to help a support group. We have several places around with potential for getting a hall.
You have worked so hard to have started groups. Also to get that far does give me hope.I suppose we all want to run before we can walk.
I hope you are having a good day too. Have a good weekend.
Best wishes and thank you
JULIE CARMAN reacted to Larry in How can i keep going
I am so sorry to hear that you are feeling so desparate. You are not on your own there are many sepsis survivors who struggle with its aftermath for many years.
It may be helpful to talk to one of our support nurses about how you are feeling. You can contact me directly on firstname.lastname@example.org
We can talk via email or better still I could arrange to call you. We are hear to listen and suggest things that may help you.
Have you spoken to anyone about how you are feeling, it is important to share, many of the effects of sepsis are often hidden, and after a while those affected keep many of their problems to themselves, believing friends and family are weary of listening. Our support service is completely confidential and you can be as open and honest with us as you wish to be.
Lead Nusres support
JULIE CARMAN reacted to Gillianflutes in How can i keep going
Your post really hit a chord with me. We do all have worse than usual days and I hope this is just one of them for you. Life is most definitely not what it was, and often when I think things are settling into more of a manageable routine, something else happens. The past couple of days I am feeling quite dizzy and light headed and I can't quite figure out why. But I haven't started writing to talk about me!
Mindfulness has genuinely helped me a lot over the past few years. Having a couple of good friends/acquaintances can help, but you are right when you say that no one really understands what we are going through. I have learned to be more gentle with myself, take more time to do things and pace myself. I was an extremely driven, active person so the transition to post-sepsis life has been extremely challenging for me too. We have to gently check ourselves when we look back on 'how things were before Sepsis'. We have to accept the differences and try to make something positive out of what has happened. That might seem impossible but somehow, somewhere, there is someone who has suffered more than we have and we have to be grateful for what we do have, no matter how little.
For now, please accept a big cyber hug across the Internet! Find 3 things to be grateful for today and celebrate them. No matter how small they might seem. Xx
JULIE CARMAN reacted to 2005rachel0 in fundraising ideas needed
Thanks Julie, I really like the idea of giving out symptom cards with prizes, I'm def going to do that. I'll get in touch with the fundraising dept too. I've got 3 weeks left off sick til I'm back at work so think I'll use the time to start gathering / begging for raffle prizes
JULIE CARMAN reacted to Palmiter in Post sepsis
I am a sepsis survivor, and do understand and know what you are going through. One way to look at how you are reacting to this sudden illness is, quite frankly, your body is "grieving" both physically and mentally. During my own personal recovery, I experienced what you have described. It will take awhile for you to fully process what actually happened during your unexpected illness, and all of the physical and mental symptoms associated with this "sudden trauma". From what you have written, you sound like you are on your way to a good recovery, despite the tears and fears. Ironically, these uncomfortable "feelings" are all part of the healing process. Just remember.....you ARE a survivor....not many sepsis victims are.
I hope I have helped.
JULIE CARMAN reacted to Maine in Post sepsis
Do have a look at our website, in the support section - 'survivors' and download either of the booklets: Post operative -Sepsis and /or 'Sepsis Survivors Information' at the end of the text. They should help you make sense of everything you're experiencing at the moment and explain to everyone around you what you're going through. If it would help to chat to one of our Sepsis Advisors, just call our office and we'll be in touch.
JULIE CARMAN reacted to Mark Sollis in Post sepsis
Hi there - and thanks for sharing your experience
Delirium is a whole new weird part of any Intensive Care period - whatever the cause of the stay. Writing those things down now will really help over the next few days and weeks - to distinguish reality from your dreams. In time you will be able to look back and understand the separation of the two. I had some major crossovers for a long while - but soon learned to know the true "reality" and be "aware" of my dreams. Stay strong and seek help from close friends, family and the Trust. It takes time but you will win through
JULIE CARMAN reacted to philly in Post sepsis
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
JULIE CARMAN reacted to Geoff in Just Joined
I'm age 52 and have just joined this forum after surviving sepsis (septicaemia and cellulitis) in March this year. No doubt what is to follow will sound familiar.
I came home from the office on the 2nd of March after a totally average day, feeling tired and lethargic. So what's new ? Went to bed and woke up next day feeling worse so went to see the doctor who took one look and said, "Go to A&E now!".
At first, I didn't want to go. There was no pain, just tiredness. Why go to hospital, especially A&E?
My wife and son, bless them, insisted on getting me to the local A&E and the last thing I remember of that was being wheeled through the doors. Had I lived alone, I'd have gone back to bed and popped my clogs. As it was, two weeks later I awoke from an induced coma, wired, tubed and floating on a morphine-induced pink cloud, wondering what the hell had happened and where I was. Gradually, I gathered a befuddled picture of what had happened and, as soon as they could, my wife and son visited to explain the details.
The sepsis had started in my left leg, leaving several ugly wounds which needed debridement in a series of operations. There was a debate at the time as to whether or not the leg would be amputated but, luckily, that wasn't necessary. I spent a month in ICU and a total of nearly three months in hospital, by which time I could shuffle slowly along the ward on crutches. The wounds are still 'mummified' in layers of dressings and bandages today, some nine months later with the addition complication of oedema.
Despite all the above, I was struck by the Muse,
Oh, ‘twas at the start of March this year,
I had a nasty fright,
When a most severe infection,
Put me in a plight.
“This isn’t good”, the doctor frowned,
“Go straight to A & E,
I diagnose septicaemia,
Making you a casualty.”
A fortnight in a coma,
With a month in ICU,
Wired-up and tubed and drugged,
I really had no clue.
Eleven long weeks in hospital,
Weak and feeling sick,
The indignity of bed pans,
Then shuffling on a stick.
But now things are much better,
So as my body mends,
I’m indebted to the medic staff,
And my family and friends!
I hope you're not left writhing in agony after that tortured doggerel, rendered in the style of the great William McGonagall.
As it is, I can at least walk around on a stick now but get tired easily, all the while coming to terms with my brush with the Grim Reaper. I know what I've just said is similar, if not identical, to your own experiences but it is good to know that you fellow survivors are out there and all the best to you for the future.
JULIE CARMAN got a reaction from philman in 2 years today since sepsis!
Thinking of you, Phil. Anniversary's are difficult and stir very mixed emotions just as you describe. 7 years + for me now and things do get easier. Enjoy your lovely family, keep on top of your health issues(I know its a pain when things keep cropping up!) Thanks for posting - we need to keep talking about sepsis and by doing so helping ourselves and others on their journey. Julie
JULIE CARMAN reacted to AnnaC in feeling guilty and not coping with this at all :(
I completely empathise with how you are feeling!
I had sepsis 3 years ago, I can still remember clearly how I felt during the different stages of my physical and mental recovery process.
I'm pleased to say that with the right help, you can feel better and learn how to deal with the emotions you feel at the moment! It's not "getting over" what's happened to you that I think is important, it's learning how to deal with it and put life into perspective again.
Cognitive behavioural therapy was my lifeline. I know not every therapy suits everyone, but I would recommend everyone to give it a go! It helped me to look at my experience differently and to cope with the different emotions I was going through. I saw a psychiatrist initially, was diagnosed with post traumatic stress and saw her for a few sessions. Her therapy really wasn't for me, which is why I seeked my own CBT. If you are willing to try anything, then you will find the right help for you.
It will get better and easier, not straight away, but in the not so distant future!!
I hope it helps to know that there is light at the end if the tunnel.
JULIE CARMAN reacted to Maine in Doctors = Frustration!
Sadly, I hear this quite often from sepsis survivors. They are battling with the long term problems of PSS; fatigue, poor concentration and loss of short term memory in particular and then they find some healthcare professionals dismiss their problems and tell them to get over it! If you have the physical problems of PSS then others are far more accepting of your situation because people can actually see what's wrong and they can quantify it.
It just shows how much work we still have to do to raise awareness and educate more healthcare professionals and the general public about recognising sepsis and the long term effects afterwards. If you'd had a stroke, virtually everyone would understand the condition and know what to expect during your rehabilitation period.
I can only say, I'm so sorry you're both experiencing this lack of awareness from some of the healthcare professionals you've contacted and I hope in the near future, together, we'll be able to correct this, so sepsis survivors receive the help and support they deserve. We now have our new 'Survivors' leaflets available from the office which may help you to highlight PSS to GP's etc. If you would like a copy, do request one from our office. Shortly, you'll be able to download a copy directly, from our website. Wishing you both the very best for the future, Libby.
JULIE CARMAN reacted to Mark Sollis in Why do i feel guilty.
So sorry to hear you are still feeling unwell - and Julie gives some good advice in seeking support from your GP
As for the guilt - I perhaps understand how you feel as I have often felt the same. I am a survivor from 2008 and like you, am overwhelmed when I hear of others that have had such severe and often fatal outcomes from sepsis. I was one of the "lucky" ones. No (known) long term effects and no mental trauma from my 3 months in ICU. Lucky is of course not the right word - given that my life was saved by an amazing team of people - but I use it as there are so many others, despite the dedicated work of those same professionals, that just don't pull through ..
Not sure I can say anything to ease your guilt but you will know that the life you have now is a blessing. Having been through those tough times (no matter how insignificant when compared to some), there is no guilt to enjoy what life you now have. For me, I so now appreciate the time I have with my supporting family and close friends and for that I have no guilt. Hopefully through the UKST I can help others along the way too. I'm no therapist but maybe by bringing something new into your life will help focus on the future positives and help you move forward (have you tried parachuting? )
I do hope you see your GP to get the help and support you need - and thanks for sharing your story here
JULIE CARMAN reacted to Hayley's mujm in Local awareness raising
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.
JULIE CARMAN reacted to email@example.com in How Long Til I Feel Like Me Again
You really have had a bad case of it having had sepsis three times and a kidney stone operation, you poor darling. You are over the worse now and things can only get better for you. This is very debilitating, you do have down days but will also have good days. It is very hard to keep going with having had sepsis at times and I think the only people who really truly understand are the survivors of it, you almost feel like a hypercondriac I know I do at times and you try and keep the symptoms to yourself to try and get back to normality, well at least thats what I try to do as we almost feel guilty complaining about our symptoms to our family and friends and also doctors.
When in fact we have he right to do just that as talking about it to someone whether a health professional or to friends/family it makes us feel that little bit better but does not necessarily make the after effects of sepsis go away.
I am still struggling with having had sepsis and to be honest I try to keep it to myself as much as possible at times, I go into work put on a brave face, get on with my job but when I return home I am completely and utterly exhausted like never before. I came in from work Saturday, had a 50 mile round trip to work and back, I went straight to bed and I have a family, but I just needed to sleep I was exhausted. I slept from 4.30pm-7.30pm I could have slept for England, but my body was telling me that is what I needed to do and I must confess I did not feel guilty about it. My family understood and were supportive. So if you need to rest or sleep you do just that and dont feel guilty about it it is your body telling you to do that.
I know we do feel angry at times with having had sepsis, I feel the same at times which is only natural all these emotions are normal. I some days can just cry and cry and never stop, its my anger coming out, gladly its not every day now, probably every 10 days or so, something can just trigger it off, but when I have a good cry my gosh do I feel great for it. So if you need to get it out have a good cry its therapeutic indeed. I have been referred to a counsellor now at my request my GP thought that I didnt need one having spoken to me at length bless her, I have had very good support and understanding from her which I think helps.
I have a lot of aches and pains like I never had before and I too have numbing in my legs and hands at times I think I may have a little nerve damage as I get tingling with it too, it comes and goes, I never had this before sepsis.
All I can suggest Doodle is that to stick in there we are all here to help and lift you up if needed as we all know what you are going through and really feel for you. To pick you up a little why dont you book yourself when better for a nice manicure or pedicure or hot stone therapy, aromatherapy or facial or a lovely day out whereby you are treating yourself for the day as you deserve it!.
Take care for now and the only way is up!