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Everything posted by Isabel

  1. Hello there. First of all I am sorry you havent had feed back. Normally a notification comes up on email. I havent had one but really not sure if all members get. I haven't been on forum quite a while due to many appointments and problems so would have replied. I do hope you have some help or answers by now but cant relay to your husbands as I'm not familiar with that. Isn't it so very frustrating when the patient or carer/family cant get answers or help. THAT I can relate to as my GP's say they dont know what to do and i feel I dont want to bother them anymore. Is there anyone on the cancer side you can talk to. There are so many helplines its difficult to know which is the most helpful for you and your husband. As for his feelings i cant tell you how many times I have said my body cant take anymore. Its said when you are most tired because thats how we feel but somehow tomorrow is another new day. I do wish you both well and hope someone out there can relate to you both. Take care of yourself too Best wishes Isabel
  2. Morning Charley H20 I hope with each reply it gives you a small bit of comfort. Its a traumatic time for you also trying to help your daughter. We all send our thoughts to you your husband and daughter. I too had my bowels destroyed and into my stomach. I had it pumped twice a day of infection after surgery. Also weekly visits to surgery. Its a big shock to your husbands system and you will be struggling to know what to think. It is a long recovery but each day is a new one that I really hope gives you all the support you will need. Sepsis UK support phoneline are invaluable, please when you can ring. We too are here as someone will always understand what you feel. There is no right or wrong way to feel. Just do what you are doing. THE BEST YOU POSSIBLY CAN. Thank you for finding us. Take care of yourself. Many blessings to you all. Best wishes Isabel
  3. Hi there I know it is 9 months since you wrote your struggle on the forum. I was going through it and for some reason yours came up. Dont know why but I thought I must reply and see how you are doing. How are you and Layla ?. With 2 other children you had a mountain to climb. Thank goodness for your husband. He soynds so supportive. Rest and pacing yourself has been emphasised to me so many times and I only have myself to worry about. Its so difficult to do that at times with having a family but it sounds like you have understanding around you. It does get frustrating but I am hoping its a little easier, if not please accept help. I found it hard to do that but am better.... a bit !!! If you do have the luxury of a spare half hour have a warm fragrant foamy bath. Or rest with your favourite soft music. Even just a magazine a tea/coffee and a treat. In other words time for you. Your body has been through a trauma. You will have built many memories of Layla since you wrote. Well done you for coping with it all as hard as it is. Take care Isabel Hope you didn't mind me writing
  4. Peter please accept my apologies for not replying sooner. It was lovely of you to respond. I have had surgery on one hand. Yes you're quite right about arthritis. It has affected many places. My thumb joints have crumbled and on August 7th had a bone taken from my forearm to make a new thumb joint. Isn't that amazing. Its still an ongoing recovery but much easier. I had nurses twice a day for two weeks but found opinions on painkillers differed with my GP. Last week i was in two days having my 6 monthly bladder procedure which has been done since sepsis. It went well no problems found, no biopsies needed. I do have a very large stoma hernia which is affecting the stoma and groin so have another hurdle to go but will deal with it. I dont know if you saw Dr Ron Daniels on Good Morning Britain television this week. Listening to them all talking I related to all what was said. In a weird way it gave me some comfort. I wonder if any other survivors felt the same if they managed to see it. It just backs up the theory Sepsis Awareness is so important. You have been through SO much too and i know you think will I come through the other side. Thankfully we did, if we didnt have wonderful people around us it could have been different. I'm in a better 'place' thank goodness but repeating what was said " post Sepsis is horrendous " but we work at it....all of us dont we. Take care Peter I know, as I do we log in from time to time and you wont see this answer for a while. But none of stop remembering all others struggling. Take care Isabel
  5. Hi everyone I thought I would give you an update since I last wrote. Larry has been a great help and support also Julie, Brian and Gillian thank you for your replies. What would I have done without you. It just shows what a difference the forum, talking and sharing worries can make. So please hang in there and share. I have been doing a big effort at pacing my day. I know not every day is the same. I would usually go from one thing to another never thinking tomorrow is another day....if I feel ok. I feel good today ( which is why I am writing ) and have told my sister I do. She was so pleased I thought from that response, its just as important to tell someone ' I'm good ' and make their day too. Tomorrow may not be but at least I know I can have those moments. I have seen my GP today. It was a very good appointment and he has reassured me they are always there for me. I feel much better about that. Couple of other things have been dealt with so I am certain it must have all helped me. Julie I have had a long chat with a NLP practitioner. It sounded like something i would benefit from. I have been for my pre assessment for my first hand operation once I have the date, which hopefully is soon, we will set a date. Thank you for your help and hope you are doing well. If I have helped one person my letter is not for nothing but please write if you are having a bad time or share your good day. I did and had precious important help back. Take care. Best wishes Isabel
  6. Hi Julie. 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 Isabel x
  7. Morning Nicole Everything you feel is what we are all feeling or have felt. Gillian is so right you dont have that luxury of lying down or sitting when you need to when you have a young family. I have been getting some invaluable help from here so please write. I locked myself from asking because i thought its been over 5 years and my expectations were unrealistic. Its a balance of pacing what you have to do. (Hark at me saying that when I've only just been told that ). But its true. You dont have to do things to be a super mum you are just by being here in theirs lives. At such early stages we have all pushed to be as we were before. It isn't until we come down with a bang, we aren't the same. But gradually you will get through those awful days by doing a little and good days not doing far too much. Good point Gillian I'll look up about the cider vinegar. Like I've been told please use this site , dont be me who hid away. We are all invaluable for helping each other. It may not always be the answer for you but the most important thing is we do understand that feeling. Take good care and whatever you do or not do for your children they will still see a mum who loves them Best wishes Isabel
  8. Morning Julie I had a good helpful chat with Larry. I have always been honest with my GP about how i feel so they know how things are. My usual GP has told me they are there and I can go when i need to. It was the new one that threw my safety net when he said the doctors dont know what to do for you. I wont be seeing him again. I have sore problems with my stoma and am going to hospital today about it. So that doesn't help also my bag leaked and soaked the bed BUT I'm still coping so great eh. If you can do it so can I. Tomorrow is a new day new start. ???? thank you very best wishes Isabel x
  9. Dear Julie Lovely to hear from you. I'm Christchurch in Dorset. I would love a support group. I dont know what it takes to raise one and how much to start one. A mammoth task I would think. I will look up NLP. Larry is ringing me as you can relay better than emailing. Plus my laptop has given me up so typing this on a phone isnt good. Think because my hands operation soon I will look at ipads. My expectations were probably too high too soon. However I know I have come a long way. Its just others who cant understand ...take a tablet or we all get pain they say....so I dont ever talk about it except 2 friends dear friends. Many thanks again Julie bless you. Bless you all Love Isabel x
  10. Oh bless you Brian. I will certainly look into that and like anything I've been given will give it 100%. I am so pleased you have been helped as that gives me hope.i suppose I am a person that loves to help others but need to have boundaries of when to rest. Also i tend to think ... Ive had a rest but maybe not enough. I dont know..my head is always on the go !!!! Isabel
  11. Thank you all so much for replying so very quickly. I used to respond on forum to members to encourage but have not felt like talking about me in case I dragged someone down. The most positive thing today is to have written to you. I'm glad I did. I have done everything my GP has asked as I have PTSD and been on medication for that 3 years. I've done 18 months at pain clinic and had CBT. Also Steps to well being. Larry I will email you and would appreciate a call. Not connected I know but I have to have both hands operated on as thumbs have crumbled and wrists weak because of it. I ask myself can I cope with it but the knowledge I could be painfree must be better...I hope. Bless you and anyone. Love Isabel
  12. Gillian what a lovely cyber hug. Thank you xx
  13. Thank you all so much for replying so very quickly. I used to respond on forum to members to encourage but have not felt like talking about me in case I dragged someone down. The most positive thing today is to have written to you. I'm glad I did. I have done everything my GP has asked as I have PTSD and been on medication for that 3 years. I've done 18 months at pain clinic and had CBT. Also Steps to well being. Larry I will email you and would appreciate a call. Not connected I know but I have to have both hands operated on as thumbs have crumbled and wrists weak because of it. I ask myself can I cope with it but the knowledge I could be painfree must be better...I hope. Bless you and anyone. Love Isabel
  14. I had sepsis after surgery in 2012 resulting in 6 months in hospital. Sedated in ICU. I wrote my story on the forum in July 2015. My medical problems are many resulting from it.i have come to a point I dont want to keep going. I have had amazing doctors but recently a new GP has said they just dont know how to help me. I dont know what to do. I'm so tired. I have a busy life I'm 71 and live in McCarthy and Stone apartment. Have wonderful friends here. I make cards . social things. So I'm not hiding away. Its just pain, problems all the timep and when I am indoors I am exhausted . I'm on 12hourly slow release morphine. Thats apart from other medications. I wished they had left me in 2012 .
  15. Hi there. You are certainly not alone in your dreams , thoughts or worries. I was in ICU with sepsis and once I was transferred to an acute ward I had a visit from an ICU person to ask me questions about dreams and thoughts. Apparently it can be quite common after being sedated/intubated. They were awful dreams, being chased by animals and mauled some you couldn't even make sense of. Another of all my family lined down a store escalator but were angels surrounded by chandeliers. Thoughts of feeling guilty because although we are alive our minds are thinking dying. As soon as I could I wanted to get my will sorted and everything done. Maybe that's a process you go through. I don't know. Doesn't that sound morbid when I have been told so many times at least you are here. Without knowing, each day takes a step forward even though we feel we are going backwards . I think we are all amazing...well done ... say that especially on the low times .. I have come a long way now and so will you. Hard I now. We both and many others were on that brink that I was told our body very slowly recovers but our brain does not keep up that same pace. I have PTSD but with 18 months of help and writing down things, which really helps... I do find night is the worst time because suddenly there is time to THINK and over think....well I do. I wish there was a group in the south for us to talk about these things but thank goodness for this site. I have been so lucky to get so much help with the medical side but unless you are post sepsis no one can understand. I have probably ranted on but just wanted you to know we understand and care very much. Isabel
  16. Morning Dave Thank you for sending that. Well done to Patrick How so true the magic words. Not have I sepsis but " How do you know it isn't Sepsis !!! ". I am still struggling four and half years on after sepsis destroying my inside. I was a patient recovering from an operation, if you like I was ' lucky ' to be there and rushed to surgery. (My story is on my forum) I am in the older age and I know I have been told it's longer to recover. I am amazed the common factor we are struggling with is ....... We want to do so much AND do try. Why are we thinking just as if we have turned a corner pain, aches and extreme tiredness hit us again. I know the answer is a bit at a time, aren't we all guilty of not doing that. But we don't sit there and think I cant try, I wont try. So please if you are reading this you Are doing well, think what has hit us. If you had a really bad case of flu or another illness you would sign off from work or rest wouldn't you. Magnify this big and that puts it into perspective. Boy am I great at putting into words what I don't always practice.....but I will. Well done to you all and me for the hard work we put in. I hope you have a good weekend. best wishes Isabel
  17. Hi everyone reading this. I live in Christchurch Dorset and see there are no support groups down this end of the country at all. Do you know if there are any plans in the near future of being down south. It all seems to be up country. Isabel
  18. Hi there. I have post traumatic stress. Last year i was very bad and have just finished therapy for cognitive behaviour therapy. There is a lot of help to be had on the NHS. My GP's are amazing and helped me too. I would say to anyone don't struggle alone therapy helped me. I don't know if that is of any help. Take care
  19. Hi Lesley Anne I'm sorry to hear you are having this time and send you too healing thoughts. Would attendance allowance be any help. That is not easy tested. It is the only one that's not Take care Isabel
  20. Hello Leeny Don't we all read different stories and think someone had a much worse time. That's true, but the outcome of Post Sepsis I read is that we all have some of the same problems. Like you say, I have been told I am too hard on myself as I think I should be feeling as good as everyone says I look. As for people telling you to get over it, that's what you are trying to do, but its only a very short time and its hard going back to work after septic shock. Take care you are doing great by sharing with us how you feel. Best wishes Isabel
  21. Hello Lyndsey Its so lovely that you wrote to the forum. What you describe is what I had felt. I had sepsis 4years ago but recovery was delayed as 18 months later I had to have two further major operations because of the damage sepsis had done. After that I too felt the same ...I'm alive everyone said "at least you have survived it, you are here, I " like you, I wished I hadn't. because I didn't feel it. It was explained to me by the consultant, people see a face which looks so much better but cannot see how we feel. Last year my GP sent for me and I was then diagnosed with PTSD and have just finished a year of counselling also frequent appointments with my doctor as I am on medication for it. It does get so much better but realise no one can understand how you feel because they haven't experienced it. It has taken me a long time to get to that. I still have problems but my mind is in a much better place, so please hang in there. You have been amazing in getting help. I remember talking to Libby for the first time at the UKST and said how different I felt, she said you are not the same after sepsis. I hope you soon feel much better for you especially also your little boy. Take care Isabel
  22. Dear Clare Well your holiday is nearly here and I expect you have a list of things to take and do before you go. I remember well when my three daughters were at home. I really was pleased to read Marc has put on some weight, the feeling you both must have had when family and friends saw him looking better. Happy belated birthday too. Like Marc I am doing so much more now but tend to forget limitations but what a lovely feeling to know we can. I finish my treatment for my PTSD soon but my GP will monitor things from time to time. I am feeling so much better, I have been lucky in the help I have had. I hope Marc can get some relief for his feet and they aren't too bad on holiday. I wish him well in that the doctor can help, I really do. You take care of yourself as you are having to do a lot going away. I look forward to hearing about it later on when you have had chance to settle back down at home. Hark at me you haven't gone yet. I haven't any plans at the moment to do another party but did do a small family buffet a couple of weeks ago. Its not the size of any event but just the wanting to do it which is great. Shame I cant send you one of the photos of the Queens one. I will say goodnight and say, have a very well wished holiday for you all you deserve it. Safe journey. I plan to do a coach trip to see some friends and other family soon. That will be wonderful but also an achievement. Best wishes Isabel
  23. Hi Clare I was reading over your letter about Marc being different yet is still the old Marc you married and could understand that. I feel different and have said that to my doctor. That is reassuring because I couldn't understand why I felt different and strive to be how I was before sepsis. My doctor said you are different after sepsis. How is Marc ?. He will feel very pleased doing a bit extra all the time, putting on weight must re assure him he is doing well. Do you find it is getting easier for you....and I mean that in the nicest of ways. Are you finding any pattern i.e is the time in between feeling good getting longer before getting very exhausted or does it not make any difference. You will both be looking forward to your holiday now as its so much nearer since we last wrote. The procedure I had done in April has still worked yehhhh so when I next see the consultant if its still a success he will do it every six months. really fantastic not to have pain in the pelvic area. I think I told you about my plans for a tea party for the Queens 90th birthday. It was Friday just gone and was a huge success. I gave a short speech to thank all my helpers, the doctor said so long as I have that, I will get through it. Also I paced myself......most of the time !! I did have a smile looking a the room filled with red white and blue decorations, table ware and balloons everywhere, but that only happened because of the men who put them up and ladies helping me. Old fashioned music that was on in the background but people were singing. Love them they gave me a M&S voucher and flowers. Sooo now I am resting but am not as bad as I thought I would be. That has to be the amazing help I am getting with my GP and my counsellor but I must admit to feeling it is taking a long time. BUT I am lucky to get it as others are not so lucky. I smiled when I read about you saying "cherishing life together" because at one point I know you wouldn't have thought you would have that chance to organise a family holiday. Wonderful, well done. I hope with packing and planning for all of you, you are able to step back and relax. You take care and don't forget Marc has had wonderful care and its been hard for you both so well done. If you were here I would give you a reassuring hug, but now it has to be hug hug hug. Speak soon Isabel
  24. Hello Jenna I am so sorry to read your news. Even being a nurse doesn't stop you from feeling devastated as it was your lovely mum. The more stories you read and hear about, doesn't it just show us the importance of more awareness with as many that can be told. It doesn't mean all sick people would think " do I have sepsis " but just to be reassured why it IS'NT sepsis if symptoms could be there. I have amazing doctors now, but I never used to, so do understand what you mean. That is why this forum and UKST is so vital in helping patients, families and carers to survive, recover or share. While it doesn't change our sadness or pain I do believe sharing does help, we don't feel quite so alone as we genuinely know somebody else on here really understands. Look after yourselves Best wishes Isabel
  25. Hi Clare How are you both and your family ? What has been happening lately. I was really pleased to know you both managed to go away, the children would be so excited. You and Marc also, I know being a mum you must try to hide too much worry, Marc I know would try to be as 'normal' as he can do for them. That takes even more energy. Especially holiday times, to get away however short would mean so much to you all, its away from the usual routine. You are doing amazing. Don't ever question that will you?. I'm so sorry for my delay in answering I have been in hospital, but as far as that goes I am doing ok. For several days last week I was on my very first of brilliant days and I felt like hugging my counsellor, but I gave her a card with a poem I made also wanted to hug my GP but then after a fall indoors went down a bit. But am doing ok now. Must learn the art of doing things gradually and not wanting to do it all just because its a good time. It becomes a rollercoaster of ups and downs. Marc probably experiences that. I bet we all do. I hope you are doing well and Marc is having a better time. Take care Best Wishes Isabel
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