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Hi, I am a university Product Design Student at Loughborough University and am doing a final year project on monitoring infections to prevent the onset of sepsis. And would be amazing if could fill out my survey so could understand some insight into infection prevention and any issues anyone faces. Should only take 5 minutes to complete.
Joe, I get the tired bit myself and many others would call it exhaustion. Like Red said, you've got to listen to your body and take time out to rest when needed.
My taste was all over the place. Everything was salty and I could only stomach bland foods. Enjoyed a curry before but found even the mild ones too hot. I've always enjoyed a pint but the taste post sepsis was awful. The only drink I cared for was lager and lime, where as before I was a real ale man.
Now - love my curries, always up for a pint (Blonde, Golden) and now eating out which I avoided for being wasteful.
Worst thing for me was not being able to add up in my head, mood swings that hurt my loved ones and not instantly listening to people. It was as though I had to tell my brain to listen rather than it being automatic.
Now - still get frustrated and my mood can be low but I sit and speak with my wife and share with her how I feel and this has been a great help to her understanding.
Best thing I did was to write a diary. In it I'd put pain level, activity, mood, upsets and anything I felt positive about. When my mood was low I could look back and see that I was improving.
Wow, thanks everyone for replying to my post so fast. They are really nice comforting words and I have found by sharing my story, it has lifted abit of weight off from my mind. Seems incredibly strange reading my own story back. Looking back at the year there has been a lot of stress.
I have realised that I have kept it bottled up from friends and family because I have felt silly to express and go on about myself.
I really appreciate you guys taking the time to write back and it's been nice to relate with others in the same/ similar position- reading other people's experiances and how they have coped.
It's really underestimated and I really hope you guys stay healthy and continue to become stronger.
I will read up on the group. Thank you Ian, Larry and Red squirrel.
Have any of you guys got any side effects?
I have had to make a few adjustments in my life. I can't drink alcohol anymore or eat a fatty meal. Not so bad but I find a social drink quite nice and going out having fun is something that I miss ( I never use to do it much anyway) and I get tired with associated back pain. Could be a lot worse.
Hi Joe i hope you may feel some reassurance from the replies you have already received. like you i worked in a physically demanding enviroment and to be honest i underestimated sepsis not surprising really as i knew nothing about it. Its taken me along time and with a great deal of resistance on my part to understand and learn about recovery and what that means for me.push myself too hard and i pay the price.recovery will come but can be painfully slow and with setbacks. but at first it can be important to keep things simple.read as much as you are able both on and off this forum.be good to yourself.rest when you need to.and take whatever help is available. the sepsis helpline is a fantastic resource and offered great support in that first year when i just needed to talk to someone who understood.
kind regards ian
Sorry to hear you are having such a difficult time, all of the things you mention in your post are very common experiences of sepsis survivors. Sepsis recovery is poorly understood and many of the problems experienced are unexpected and hidden from those around you. It can be helpful just to talk things through with some one who understand; the sepsis support team at the UK Sepsis Trust consists of trained nurses who have a lot of experience of sepsis and the many problems that can be experienced during recovery. You can contact them by calling 08088000029 Monday to Friday 9 -3 pm. You will be able talk to them about your sepsis and recovery and ask questions that you may have. We also have a support groups that meets in Hove, meeting others who have experienced similar problems can make recovery feel a less lonely process, the support team can tell you more about the group if you are interested.