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Everything posted by JULIE CARMAN

  1. Hi, Isabel, It is tough and I'm glad you have been able to speak with Larry. Be kind to yourself, a cliche, I know....but treat yourself as you would a good friend who has been through what you have........just saying! Glad to hear you GP us supportive too. I will make some enquiries for you but I think there is a Support Group in the Bournemouth/Winbourne area. (but my geography is not brilliant!). I have set up a couple of Support Groups now..... there is not a lot involved really but you do need some energy to keep things rolling so need to be fit and well. Basically I source a suitable room (Churches/village halls often reasonable) and take along tea/coffee/biscuits etc. Get there early to set up and meet and greet and clear up at the end. Larry or Oliver come along (really important, in my view) to have clinical support. As survivors we often have lots of hints and tips to help one another and sometimes just knowing someone understands how you feel is just so so helpful! Laughter, tears and sharing plus great advice from the UKST reps too. Usually start small with one or two attending then the Group grows and folks tend to support one another both in the Group and also by email etc in between meetings. Hope today's a good day for you. Julie x
  2. Hi, Isabel, Sorry just seen in one of your replies to others that you have been down the Pain Clinic route already. However, do your medics know this hasn't helped and that you are still in lots of pain? Something I personally found helpful was a couple of NLP (Neuro Linguistic Programming) sessions. Not available on the NHS but suggested by my GP when I was struggling....it really helped me reframe what had happened and move forward at a very difficult time in my sepsis/PTSD recovery. Wishing you well, Julie
  3. Hello, Isabel, So sorry to hear that you are feeling low. Some good advice here, I would definitely consider ringing Larry for a chat. I would also consider asking to see another GP at your Practice and letting them know how you are feeling. They may be able to refer you to a Pain Clinic to try and optimise your pain relief, it maybe you have to try a few different combinations to get something that helps you get on top of your pain. Not sure where in the Country you are Isabel but we have a number of UKST Support Groups across the UK now and if you felt up to it you may find it helpful? We don't have all the answers but it is a safe place to ask questions, feel supported and we often find we can encourage and help one another. With kindest regards, Julie Sepsis Survivor and Volunteer UK Sepsis Trust NW
  4. Hi, Rachel, What a great idea...I'm a survivor too (and a UKST volunteer) These are some of the things I have found great at raising funds: Raffle, Chocolate Tombola, Books 2 for a £, Plants/bulbs wrapped in orange/yellow/red paper, cones of sweets, cakes, biscuits,cakes. I usually bake and buy things in bulk (or sometimes get things donated or at cost! - need to be a bit cheeky but once folks know what its for....usually very generous) - wrap in cellophane tie with orange/red/yellow ribbon and attach a symptom card either adults or children. So folks are getting some info with their purchase (shame to miss an opportunity for a bit of awareness raising!) The UKST do have collection boxes you can dot about the place.......i often find putting for example "scones and jam -suggested donation £2" and leaving folks to it means folk often give more. You could do similar with prosecco, cheese and wine etc. Don't think I can send you pictures on here but if you contact paula@sepsistrust.org the fundraising lead she should be able to share them with you and will have more ideas. You could do this at your Party and also at work in your Dept or across the Hospital too. Good luck and happy birthday.
  5. Hi, LindzV, Aches in arms and legs are fairly common post sepsis.Usually settle with time and are a "normal"response to what your body has been through. However, I would definitely speak to your GP or midwife to check things out as you are pregnant. Also try and rest as much as you can. You may find it helpful to speak to one of the team at the UK Sepsis Trust on 0800 3896255 to discuss your concerns. Take care Julie
  6. Hi, Dominic, I have emailed you.Kind regards Julie
  7. Hi, Great advice above... it does take time and patience. I would just add.... use your book to write down your progress and achievements too. It may feel slow at first but in time you will be able to look back and see how you have come.
  8. Hello, Liz, The North West (Manchester ) Support Group is held at the Methodist Central Hall, Stevenson Square, Oldham St Manchester. Post code M1 1JQ in Room 10. The next one is Wednesday 24th February between 6pm -8pm. More details from the UKST Office on 08456066255 or from me. Thinking of you, Julie
  9. Hello, Liz, I am so sorry to hear of the loss of your husband. I hope you are well supported by family,friends, your GP and work colleagues and able to ask for the help and support you need. The UKST is working really hard to raise awareness and to support survivors and those who had sadly lost a loved one to sepsis. We do run a Support Group in the Manchester area should you feel able to come along (fine to bring a friend too if it helps). The next Group is on Wednesday 24th February in the early evening. Liz, I can't begin to imagine how you are feeling and I appreciate that attending the Group won't be easy but we are there to listen if you wish to talk and feel ready to do so.I know this won't take the pain away and change what has happened but we are a small friendly group who have been affected by sepsis and can hopefully help you feel supported. If you want to email me directly that is fine and my email is juliecarman.lv@sepsistrust.org. Take care. Julie
  10. Hello, Natalie, So sorry to hear you have lost your dad. Do contact the UK Sepsis Trust - there is an in touch service - if you want to chat with someone - and also a few Support Groups set up across the Country. Have you spoken to your GP about how you are feeling? Might be worth considering this as they should be able to offer you help and support. Take care, Julie
  11. 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
  12. Hi, Sorry life is so difficult for you at the moment. Could you explore getting an extension/postponement for your essay/degree and then tackle it when you are feeling better. Take some of the pressure off? Feelings of guilt, shame, anger, upset all seem to be part of the getting better process. As a sepsis survivor I can empathise with how you are feeling. I personally found NLP (neuro linguistic programming) helpful and in time was able to reframe what had happened to me. Another big lesson for me was to be kind to myself - sounds a cliché, I know, but if you had a good friend who had gone through what you have gone through think about what you would be saying to her and try and show that kindness and gentleness to yourself. I agree with Anna - it's not something you "get over", as such but in time you will be able to move forward and the fears will go away. I hope your appointment is helpful, you get the support you need and can reassure you that in time you will start to make progress Julie x
  13. Hi, Phil,(and Doodle) I am frustrated and indignant on your behalf! So sorry you had had such a lack of understanding and support from some of the health professionals you have seen. I know the UKST are keen to educate GP'S around sepsis and are working to address this. Do insist on seeing the original GP to chat through your results and discuss how you are feeling. I was fortunate to have a very sympathetic and well informed GP (who had know me a patient for over 30 years) so she got it when I said I didn't feel like "me" and was unable to do things I had previously done before. One of the consultants tried to play the age card (bear in mind I was in my fifties!!!!!) and he said " we are all getting older you know" - NOT helpful. What you feel is real and needs to be recognised. One thing I found helpful was some NLP (neuro linguistic programme) treatment which my GP suggested I consider. It was not available on the NHS but something I decided to try - it helped me reframe what had happened and move forward. Maybe something to discuss with your GP??? In time I did start to improve and am now back to "normal" maybe a new normal but I enjoy life and am back swimming, cycling and playing with my grandchildren. Do ring the office for the Survivors Booklet, I've seen the draft and hopefully it will help you understand what is going on - perhaps get a few for your GP Practice too!!! Kindest regards, Julie
  14. Hi, Phil, Thanks for sharing your experience and I hope things improve for you soon and that you are able to fully enjoy family life with your young boys and new arrival later in the spring. Sepsis takes some time to "get over", as I know from experience, and it can be very frustrating and worrying when you feel you aren't getting better fast enough. I've no magic bullets to help with that but you might want to consider the following: Speaking to your GP about how you are and asking for his/her support and advice? A booklet from the UKST "Sepsis: A guide for patients and relatives" tel: 0845 606 6255 - I found this helpful especially the "after sepsis" section. Attending a support group - not sure whereabouts in the Country you live, Phil, but there is a Sepsis Support Group in the West Midlands and also one in Manchester which meets for the first time next month. It is important to allow yourself time to fully recover (hard to hear, I know!) and treat yourself as you would a good friend who had been through a similar experience. My sepsis experience can be found on the UKST website - personal stories - Julie Carman and may be of interest. I can say that I do now feel "like me again" but it has taken a while (much longer than I wanted!!) and like you I feel lucky to be alive and that my leg was saved. I hope that in time you will be back on top form too, do use the Forum and the expertise of the team at the UKST for support and as a sounding board. Most survivors (and their relatives) find it can really help to talk to someone who knows about the problems and questions they have. Take care, Kindest regards, Julie


    Dear, Paul, I'm so sad to hear that you have lost your partner Alan to sepsis. I know that nothing I can say can take away the pain, shock and grief you feel. Do ask for and accept help from friends and relatives. If you haven't done so already consider speaking to your GP too. The UK Sepsis Trust have a Booklet "Sepsis: A Guide for Relatives and Patients" and Support Groups are available in the Midlands and Manchester areas which may be helpful. (Tel: 0845 606 6255). Julie
  16. Hi, Denise, Thanks for posting I'm sorry to hear you still feel unwell at times and have feelings of guilt. I survived sepsis in 2008 and initially felt guilty and ashamed and very disappointed with how long it was taking me to recover. A very supportive GP and Practice Nurse helped me recover (although it did take time and I had to learn to be patient and kind to myself). Have you thought about speaking to your GP about how you are feeling, you may find it very helpful. I can also personally recommend a booklet available from the UK Sepsis Trust "Sepsis: a Guide for Patients and Relatives" available from the team (Tel: 08456066255) which may help you understand some of the feelings you are experiencing. The UKST also have Support Groups and you may find it helpful to attend one of these. Currently in the Midlands and Manchester area not sure where you live but do think about coming along if you are in the area. Personally, I have found becoming a volunteer for the Sepsis Trust and doing some fund raising and awareness raising very helpful. This does not need to be onerous, perhaps inviting a few friends round for coffee, making a small charge and giving out a few leaflets to raise awareness of sepsis? Our UKST National Coffee Morning day is in March and you could perhaps link in with that? I have found it very helpful to get involved in this way and turn what was (at the time) a very private pain and shame into a positive public purpose. Julie
  17. Hi, Anne, That's great news. I too have found my GP and local community pharmacies very interested and supportive. So folks,lets follow Anne's lead and get the information out there and HELP MEND SEPSIS!
  18. Hi, Alison, Sorry you are having such a rubbish time the moment. I would definitely follow Libby's advise and go back to your GP (or another one) and ask for further support. Do tell your GP how you are feeling and how it is affecting you life. It takes a while to heal from sepsis both physically (and emotionally) in my experience. I'm a sepsis survivor and had lots of on going problems with my legs (the sepsis started from cellulitis in my left leg following a degloving injury in the calf). Ask your GP or Practice Nurse if there is a Leg Clinic in your area and if you can be referred. I found this very helpful for advice (I did have to wear the stockings though!!!) and info. They did something called a Doppler test and monitored me every month for a few months. Like you I was glad to be alive and that my leg had been saved but was also keen to move on with my life. Don't feel guilty about needing a bit of support for a while. I'm not brilliant at resting but found it really helped just to have a comfy stool handy and "put my feet up" whenever I sat down to watch TV or read. I even had a stool under my desk at work for six months so I could discreetly elevate my leg. Do try swimming- I started off with gentle swimming (once my wounds had healed) and proudly swam 1 mile for the sepsis trust in June. My legs are scarred and not a perfect shape but they work - I can walk, swim, trampoline with my grandchildren etc etc. Walking helped me too - I was frustrated initially at the short distance I could initially manage but it soon built up. Being out in the fresh air really helped me. Important to say I'm not a clinician so do check things out with your GP or a sympathetic Practice Nurse. Give your self time,be kind to yourself (sounds trite I know) - but what would you say to a friend who had been through a similar experience to you? - treat yourself with the same kindness and gentleness. Take care, Julie
  19. Hi, Mark - not sure if this would be of any use? http://www.patientstories.org.uk/recent-posts/julies-story-now-available/
  20. I would be interested if I can help, be involved in any way.
  21. Hi, Doodle, I think a roller coaster is a good way to describe it. I contracted sepsis 6 years ago and was very disappointed with my slow recovery. However, I didn't, at the time realise how debilitating it can be. I hope soon you will have more "good days" than "not so good days". The UKST do a really useful booklet "Sepsis: a guide for patients and relatives" which if you haven't already done so I would advise you to contact the UKST and request one (I wish it had been around when I was struggling.) The things I know are: Give yourself time You need to be kind to yourself (treat yourself as you would a friend who had been through a similar experience) Supportive family, friends and employers really help Talking about how you feel can really help (when you feel ready to do so) Fear steals your joy - so if you have concerns speak to your GP, the UKST etc -don't bottle them up Let people help you, take you out, bring treats etc Try and do one thing each day that brings you joy - short walk, bake a few buns, bath, massage, facial Exercise in the fresh area (or even just sitting in the garden/a park and enjoying nature) I bought a lovely note book and made a note of things/people I felt grateful for (including my returning health and energy - even if just managed to walk a bit further round the village that day!) and looking back on it over time really helped me see how far I had come. I hope these suggestions are helpful ( I know they sound a bit trite) - but they really helped me at the time ; 6 years on - I now share my experience via the Sepsis Trust and www.patientstories.org.uk (-click through to "Julie's Story") using the film and my experience to raise awareness around sepsis. Really important to say that when I do this with Health Professionals - I'm not starting a fight - just sharing how it felt to be me in that situation - hopefully a constructive message - leading to wider learning and better outcomes for others. It has taken a few years but taking action/sharing my experience empowers me (and others) to move forward, make improvements to sepsis care in a positive way. Take care, Julie
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