Jump to content

red squirrel

Members
  • Content Count

    66
  • Joined

  • Last visited

  • Days Won

    13

Everything posted by red squirrel

  1. Hi Richard thanks for the update. sounds like your asking lots of questions which is good, but please dont be disappointed with yourself in any kind of way, try to bear in mind what you have been through. It took me a long time to understand the difference between tiredness . fatigue .and exhaustion. and post sepsis i was exhausted in a way i had never been before. i can really understand your frustration. but try not to push yourself too hard at this stage if its leading to diizzyness at that point we start to risk injury and all that can mean.Really glad you put your foot down about not trying hard enough, i have met many doctors who dont seem to know much about sepsis let alone physios. wishing you recovery. kind regards ian
  2. Hi Natalie and welcome to the forum. firstly you are certainly not any kind of drama queen , i have read from other members of here who contracted sepsis post childbirth, it might be worth reading arround when you feel up to it. in the meantime you might find it helpfull to speak to one of the sepsis nurses 0808 800 0029. apart from this forum and the members on it they were the only source of information on sepsis and recovery that we could find at the time. my sepsis was post surgical and i have had to learn the hard way to manage my expectations regarding recovery. in the beginning i pushed myself to hard and then paid the price. knocking myself out for a week or more only to have to start again. i know it may not feel like it right now but you are doing really well. you both survived ,and thats wonderful news. recovery takes time and there will be setbacks along the way. but there is help available .you are not alone in this anymore. kind regards ian
  3. https://www.bbc.co.uk/news/health-47279072
  4. Hello Richard, welcome to forum. your current symptoms are something that i and many others im sure can identify with and sound quite normal considering what you have been through.i also arrived at sepsis via what was thought to be a kidney infection post surgical .its taken me along time and with a great deal of resistance on my part to come to terms with sepsis and what that actually means for me as far as recovery/timescale is concerned bearing in mind that no two patients or recoverys are exactly the same i have read as much as i can both on and off this forum and would encourage anyone to do the same. this forum and the help of other members have helped me to manage my expectations in that regard. recovery will come although this can be painfully slow at times, you have been through so much over the past few months so in that sense its still early days, we had some great support from the sepsis nurses on here i know you cant phone them but im sure you could email them, they were very helpful to me and my wife.at the risk of repeating what you already know...give yourself the time that you need...be good to yourself....rest when you need to.....take whatever help is available.just one step at a time. wishing you recovery. kind regards ian
  5. Thats great news Nasir, an understanding and informed gp on sepsis and PSS is a massive plus,and no biopsy is also great news. wishing you recovery kind regards red
  6. hello elric, really sorry to read of your recent experience and i hope you may be improving ,although you mention its in the past its actually only 5 weeks or so since the procedure a,rigid cysto under a g/a is no joke and the uretha is a sensitive bit of kit,im not surprised at many of the symtoms your experiencing ,Normally rigid cystos under g/a are not performed in increments of less than 3 months to enable recovery,so try not to worry about the lenth of time this feels like its taking,It sounds like you are well read on this so continue to do the things that can aid recovery,drink plenty of water,steer clear of tea and coffee, pomegranate is a good substitute,move arround as much as you are able,gentle walks at the start,a good relationship with your gp is also helpfull,if the pain continues they may suggest different pain meds with an anti inflammatory. The pain will subside although it may not feel like that right now, You dont mention if a biopsy was taken or what the results were so i,m hoping that the major cause of concern has been ruled out. Recovery from sepsis can be hard enough without the complication of an invasive procedure, be good to yourself.take the time you need,and be sepsis aware. i,m glad you have felt some reasurance from speaking to someone from the trust,i know the times i have spoken to them they have been most helpful.we also have some sepsis nurses who post on here also,there are sepsis support groups in some regions might be worth finding out if there is one near you,when you feel able to travel. kind regards red
  7. Hello Nigel and welcome to the forum,there isnt an introduce yourself thread on here ,maybe there should be. there is a sepsis surviors section which is open and there is a members area also which is open to registerd members.People often post there stories,writing it down can be an important part of recovery, kind regards ian
  8. Thats a massive increase be interesting to know how the formula / data was calculated to arrive at this change in stats,having a sepsis register sounds like a good idea.
  9. Hello Meecie. sorry i am not a medic so cant advise,Can i suggest you phone trust 0800 389 6255 im sure one of the nurses might be able to explain. kind regards Red
  10. Hello Dave and welcome, from reading your post it sounds normal to me, and from reading all the other replies i hope you feel some reassurance. Its taken me quite a while and with a great deal of resistance on my part to come to terms with sepsis and what that actually means as far as recovery/timescale.and for some ongoing issues.Iv read as much as i can both on and off this forum, and iv used the trust telephone when iv been concerned with worrying symptoms and would encourage anyone to do the same.I work in a very physically demanding environment so iv had to learn to manage my expectations in that regard and make changes where possible. Its only a few weeks since you were discharged so in that sense its still early days,but your doing really well, although it may not feel like it at times. recovery will come,although this can be painfully slow at times. Be good to yourself. Rest when you need to. Take whatever help is available kind regards ian
  11. 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
  12. Some interesting research reported in science daily. Mount Sinai hospital researchers have by the use of a small amount of a chemotherapy agent managed to slow the bodys inflammatory response to sepsis and other infections. http://www.sciencedaily.com/releases/2016/04/160428152314.htm Red Sorry whilst this link will direct to the site you would still have to type sepsis into the search box and scroll down to researchers discover potential treatment for sepsis and other infections its a hassle i know but worth it.
  13. Hello you could also phone the trust 0800 389 6255 they may be able to help.oxford journals seem to be cited alot regards Red
  14. HI Mark ,im really glad your niece,s sepsis was caught very early on,and i hope she goes on to make a full recovery with none or very little long term effects. But like Wease has already mentioned there may be issues further down the line.by passing on a leaflet all you would be doing is raising awareness,and thats no bad thing,it may assist her or someone she knows one day, sepsis is still sepsis,and as you and i have so often said , we are not medics and sometimes even the medics cannot determine how someone may be affected. kind regards Red
  15. hi Marky, i phoned the office for some advice after discharge and more recently also ,and have found them to be kind and knowledgeable both to myself and my partner who contacted them with her own concerns about my situation. kind regards Red
  16. Hello Wease welcome to the forum.seven weeks is still very early days in recovery,my sepsis was post surgical,so i was already dealing with another issue prior to DX .one of my main strategies for recovery from various treatments was to maintain average or above average fitness,i developed this over a number of years and it worked for me,so obviously this was exactly what i was going to do post sepsis....start slow a little running with some free training then free weights ,light at first..then slowly build up the weights ..add a pack and away you go,after all this system had worked well for me before, But i found with sepsis it did,nt well not for me anyway,recovery has been at times a slow and painful process with setbacks,i have had to learn and with great resistance on my part to manage my expectations regarding recovery,its taking much longer that i thought ,truth is i underestimated sepsis. Your body has been through alot and this may take some time to make a recovery. there is still so much that is still unknown about sepsis and recovery varies widely.no two cases are exactly the same,it sounds like your doing all the right things,if your concerned about going back to work then maybe your GP could help with that,or maybe phone the trust 0800 389 6255.there is no shame in not going back to work because your still recovering,or to think about some kind of phased return, Its important to remember your doing really well, small progress is still progress.be good to yourself ,rest when you need to,take whatever help is available. kind regards Red
  17. Hi Marky,welcome to the forum,as larry has said PSS can be a major issue for many on here (myself included),its been 11 months for me now post sepsis,and a massive learning curve along the way.Your not mad,almost everything you have described has been and still can be normal for me,recovery can be a slow process with setbacks . when i overdo things to try and force the issue i then pay the price,i can be very stubborn regarding recovery,so iv ended up learning the hard way to manage my expectations, Your body has been through alot and this may take some time,more time then you would wish,give yourself that time,be good to yourself,rest when you need to, take whatever help is available read as much as you can about sepsis PSS PTSD when you feel up to it,too much imfo can at times be overwhelming at first. wishing you recovery kind regards Red
  18. hello i was so sorry to read your other post,i cant imagine what you must be going through right now,im a big advocate on here for counseling/talking therapy.it has really helped me in trying to come to terms with issues post sepsis,PSS. PTSD,and other things also. i know there can be a bit of a wait depending on where you are in the country,sometimes up to six months but your gp may be able to help with that,i hope so. if you feel you need to talk to someone sooner there is cruse.its free and they can talk on the phone or there are home visits here is a link www.cruse.org.uk (sorry iv tried this link twice now but it just will not post) you might have to type it in. just use it as a stop gap if you need to. theres also the sepsis nurses on here 0800 389 6255 who are also very kind and knowledgeable wishing you recovery, kind regards ian
  19. hello skyehammer it can be a scary time waiting for results,i used to find it a bit of a white knuckle ride to be honest....still do. its good that you are seeking help and advice from your doctor and the various tests serve to identify and rule out certain things,i have been described as a patient with a compromised immune system and as such my consultant advised constant vigilance,its been longer than 4 years for me since experiencing these issues but only 11 months post sepsis,and i still have mystery viruses and infections often...one just last week,which after a visit turned out to be a virus. the thing about antibiotics is whilst they mostly clear the infection they also wipe me out regarding immunity and i have found after a course im then open to anything and everything untill my immunity re.balances..that can mean a throat ,ear eye tooth sometimes one sometimes together.other medications also have there own side effects,and as you know no two cases are the same. it wouldnt be a bad idea to top up the vitamin D,maybe your gp could help with that. your doing the right thing being pro-active about this and i can understand the worry,maybe speaking to one of the sepsis nurses on here might be helpful also. kind regards Red
  20. Hello pollypockets, good to see you here and posting,like the others i can also hear your frustration,its something many on here have been and still go through,recurring infections post sepsis can be a massive worry,iv had five post but none requiring hospital treatment but iv had iv antibiotics at times for another issue.for many recovery from sepsis can be a long and painful process with setbacks,people with a compromised immune systems the very young .the elderly are in the high risk cat for recurrence.this makes it all the more important that we become sepsis aware,and like you have already done...speak up when necessary. I know your sister is a nurse but if your ever concerned or worried you could always call the trust and speak to one of the nurses 0800 389 6255 they really are good and helped me again recently wishing you recovery. kind regards Red.
  21. thanks for posting this mark,its the conference i was asking you and lesley about a while ago,will set aside some time for this,probably while T is listening to the archers, this illness can be tough on the people who love and care for us,awareness of all its implications is a good thing. kind regards Red
  22. Dr Iwashyna gives a short talk on sepsis and post sepsis,its quite old now but still worth a listen Red
  23. hello Tanya and welcome to the forum,fatigue and for some chronic fatigue is something many on here can identify with,myself included,its taken me along time and much rebellion on my part,to come to terms with this part of recovery,but from reading around the forum and talking to one of the nurses on here (0800 389 6255) i understand much more about this aspect now.it takes time....much more time than i thought.there are good days and bad days depending on how much i try to push myself..if i overdo it .i pay the price.in short i underestimated sepsis,not that surprising as i knew almost nothing about it at first. For other reasons iv had many antibiotics over the past few years prior to sepsis and was concerned about what this might mean for me regarding sepsis and other infections.but iv had at least five infections post discharge all treated with my normal antis,but it is so important to come down hard on infections if we suspect we may have one....like the hammer of thor..as a nurse once said to me. Be good to yourself.give yourself the time you need,read as much as you can,but only if you feel up to it.an understanding gp can be very helpful,take whatever help is available,use the number above if you feel you need some reassurance,it was a big help to me and my partner, kind regards Red
  24. hi principessa information,awareness and support is key,truth is this illness can be hard on the people who care for us,there is still so much that is unknown about sepsis and recovery varies .some people are able to make a full recovery with no long lasting effects,but the nurses can explain this much better than i, Your doing the best you can,under some difficult circumstances. kind regards Red
  25. hi principessa2828 its sounds like you going through a massively stressful time,and all this when your waiting for your own results to come back,its so important that you look after yourself as best you can,i really think you might benefit from talking to one of the sepsis nurses about some of the issues youv written about,you might want to give your boyfriend this number also, 0800 389 6255,if they cant talk straight away they will call back.they were a big help to me and my partner after discharge. Red
×
×
  • Create New...