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Gillianflutes

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Gillianflutes last won the day on 21 March

Gillianflutes had the most liked content!

About Gillianflutes

  • Rank
    Advanced Member
  • Birthday 09/06/1962

Profile Information

  • Gender
    Female
  • Location
    UK
  • Interests
    Keeping fit - cycling, swimming, running, triathlon, music..
  • Sepsis Aware
    Sepsis Survivor
  1. Hi! First of all I just want to give you a big hug! We are all on an unexpected journey, that we didn't ask to go on and yes, our lives are now very different. I had Sepsis in July 2015 and what you have written was basically me too, expect I am a bit older (53 then and 56 now). I was competing in triathlons, running half marathons and had always lived a 'healthy' life. The consultant told me that being so fit is how I managed to survive the Sepsis. I wrote a blog for a while called 'Believe!' (on wordpress) and that summarised some of my ups and downs, including some of the things I did to help myself 'get back'. Roll forward to December 2018 and am I back to what I was? No, is the answer, but I have gradually (VERY gradually!!) come to the belief that I was given a lesson (the biggest one of my life) and I now completely appreciate the life I have. I am living my 'new normal'. I have had to take early retirement from my post as head teacher of a rural primary school, because I do not have the physical or mental stamina for the job anymore. However, I am currently setting up a new business called 'AndBreathe...'. I cannot work full time, but this business is focussed on wellbeing, sharing the tools I have used, and still use, to get me through the ongoing challenges that I still face. I might not be running any more half marathons but I can run (not so fast or intensely, but I can run) and I can go out on my bike (not time trialling but a good cycle enjoying the countryside) and I am back loving a swim now and again. The main thing I am left with is the fatigue, which is mostly manageable now. The only thing I haven't completely figured out is that if I have a rush of adrenalin (excitement, stress, too much going on), my body crashes big time after the adrenalin wears off. I haven't figure out a way of easing that reaction. There is a group on FB called Sepsis Warriors. I have found them to be a very supportive group. I tried a couple of other groups but found then to be too depressing. This is absolutely NOT an advert, but I am now an EFT practitioner and would be happy to Tap with you, if you would like? Have a look at my website www.andbreathe123.com The most important piece of advice is to be kind to yourself. Don't beat yourself up. You WILL find that not everyone understands and you will definitely find who your true friends are. Maybe that isn't such a bad thing?! Take your time and focus on the small steps. I know how hard that it but cherish the small things. Best wishes Gillian x
  2. Hi, I really feel for you as a mum of 2 children. My children are adults now and my grandchildren can visit and go home so I can recuperate. You do not have that option. It does get better but it takes a long time and it might not ever be as it once was. I only say that because I wish I had been warned earlier as to how long it could take. I think people wanted to protect me. I don't want this to be a negative post though. The most important step to take is to learn to rest as often and whenever you can. Be kind to yourself. I realise that will be difficult with little ones but you really do need to do that. Three years on, I describe myself as never having a 'full tank'. I also thought I was superwoman but now realise I am human after all! I find that lying on my bed gives the best rest but everyone will be different. It is also difficult when we look 'normal'. Friends and family find it hard to understand what we are going through and find it difficult to accept we aren't the people we were. It is really important to find someone who does understand and who can be there when you have dips. I have tried all sorts of things and everything helped a bit. Acupuncture helped a lot in the beginning but became expensive. I eat a very 'clean' diet and drink apple cider vinegar (Google its properties and see the different ways of taking it). Most of all I use mindfulness. That is what has got me this far and I rely on it 100%. I also practice yoga, nearly every day. I now treat myself to a monthly massage, as I try to increase my exercise. Before Sepsis I ran half marathons, triathlons etc so life is very different! I am also now in the process of accepting I do not have the stamina to continue the job I have and am looking for something where I can manage my energy and time a bit more. In many ways this is positive as it has emphasised what is truly important in life and it isn't a high flying job! You are not alone and you WILL find solutions to the ups and downs ahead but it will take perseverance and quiet determination.
  3. 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
  4. I would be interested too! After two and a half years a of trying to get back to feeling 'normal' in my job I have begun to explore what my long term options are. I believe the stress, although real, is more caused by my fatigue and not having the physical and mental capacity to meet the demands of the job like I used to? Does that sound familiar to you?
  5. Take your time and be kind to yourself. It is going to take time to get back to feeling completely well. Youth is on your side but with youth might come impatience! Your body has gone through so much. I am not medically trained but I have been through three days in Intensive Care after septic shock as well. I eat very carefully (no junk food!), rest as much as I can and listen very carefully to my body. With a wee one you will find it hard to rest but do try because fighting the fatigue does not help you at all. All the best xx
  6. Hi again Another FB group I have found useful is 'Sepsis Warriors'. I found 'Simply Sepsis' a bit depressing as everyone shared their stories with no positive end.... Sepsis Warriors seems to be more pro-active. They advertise UK Sepsis Support groups around the country. Not everywhere yet but a start. Xx
  7. I am a primary school HT. It could be me writing your post! Nearly two and a half years on but today I emailed my line manager to ask for a meeting to see if we could find some creative solutions to support me. Although a lot of my symptoms are so much better, I am still losing words and have energy issues. I used to compete in triathlons and half marathons etc but right now I don't think I will ever get back to that. I am a teaching HT and am finding switching from being the head teacher to teaching the class really, really hard. You talked about planning taking forever now, I completely understand what you are saying. Doesn't help you but maybe knowing you aren't alone will help a bit. I recently took on the weight issue. I joined Slimming World. I never ever thought I would do something like that! However, they are very sensible. It is more about changing eating habits and being accountable to someone kept me going. Once you reach your weight you can still weigh in for free! This sounds like an ad but it isn't! Being in control of something again also helped me keep going. Speak to your HT. Also go back to your GP if you feel you need to. At one point I was short term on anti depressants. It was taking so much out of me fighting to get back to the 'old me' that I went into a slump. I now refer to my 'new normal'. The more you can share your frustrations the better. I have started a Staff Wellbeing group for our local cluster. I also found Mindfulness very helpful and have started to introduce that to school too. Be good to yourself. Xx
  8. Hi Not fighting to be 'normal' is a big one. It is a long hard journey we are on and we need to be kind to ourselves. Not sure about your girlfriend but I have never been good at putting me first! Now is the time. I have always eaten a healthy diet but I have now looked even more into it. Certain spices are good for joint pain. I also drink apple cider vinegar with a concoction of spices. The initial taste takes time to get used to but I do think it helped the joint pain. I also had acupuncture which was very helpful but long term becomes expensive. The mind is a tricky one. Accept you can't focus for long. I began DuoLongo, a language app and still use it daily! I was able to do something that engaged my brain but I could do it in small chunks. It did help me and my French has come on in leaps and bounds! All sorts of language options too. ???? Life is different now but I manage my energy and focus most of the time. As you get better it is very easy to try to do too much too quickly. An understanding partner is so important. Don't underestimate how much your support means to her. Xx
  9. Hi, I am exactly two years post sepsis (septic shock after blocked kidney). I can now say that I am better. I am different to before e.g. I can't jump on a bike and ride 70 miles (but not many people can?!), I CAN now run a 10k (but slower than two years ago), I do have to manage my energy (but not quite so much as last year at this time). I have a 'new normal' and am comfortable with it. I am back to enjoying life. However, last year I was in a similar situation to you. I felt like I was trying sooooo hard and always taking two steps backwards for every three forwards. It was relentless and I had had enough. Like you I am against medication and rarely take any form of meds. But last year, I recognised that I was depressed and went to the doctor. I said that I would agree to a short stint on anti-depressants, as long as we had a plan and there was an end date to the medication. It was the best thing I could have done. Like you, in the past I would have seen it as a weakness, but this time I saw it as me taking control of the situation. The meds got me back to a place I felt I could fight again. It has been a very, very long difficult journey. At times I despaired of ever feeling like 'me' again, but now I can say that I DO feel like 'me'. I have always eaten a very clean diet but have become even more fastidious! Read up about Apple Cider vinegar (with the mother). I drink ACV every day now. Like you I have cut down on wheat etc and have limited my intake on dairy but I do love cheese and yoghurt so have not cut them out completely. I tried acupuncture for joint pain and that did help, but long term was expensive. Keep going! You can do it! X
  10. Best wishes to you. Like you, I have continued raised CRP levels but no one can explain why. The road you have been on sounds tougher than mine but at times I also wonder when it will end. I have begun to appreciate more and more the tiny steps forward. Steps that we might miss because they are so small. Hope your symptoms ease a little. Be good to yourself. X
  11. I remain cautiously optimistic (overall) that life will continue to become more normal. I know that in so many ways I have got so much better. Progress just takes so much longer than I would like though?! There IS part of me that wonders if this is as good as it will get but I keep going. I practise yoga and mindfulness, I keep pushing myself (carefully) to run a bit more and walk up hills. I am nowhere close to where I was but little by little I will continue to keep trying. There ARE times that I despair but being negative will not help mentally or physically so I do my best to pull myself out of those dark places. Being in contact with people who have been through similar times can be helpful. All the best! We are part of an elite group of people!!
  12. So sorry and sad to read of your loss. It seems that so many of us survive Sepsis because by luck we are in the right place at the right time, or are seen by the right person. I could have easily been at home when it all went wrong but had made the decision to go to the city hospital instead of going home after being told by a village hospital they couldn't do any more for me and I could go home or go to the city. More and more, people (medical and non-medical) are learning how to recognise Sepsis. The publicity is beginning to make an impact. It has not helped your brother but let us hope that what has been learned through his passing will help others. Much love to you and your family. X
  13. Hi Dave, I had Sepsis in July 2015 at age 53. Like you I am active (triathlete, cyclist etc etc). I don't want to depress you but I don't want to paint a rosy picture either. We are on a long path with lots of bumps along the way. Life is different and I have had to accept that it might not ever be the same as it was. Recently I decided to start creating the 'new' me, instead of harking back to the way I was and beating myself up. Not sure if that makes sense? Finding the right pace is the most difficult thing. As soon as I start to feel good I do too much. But how do you know what is too much until you try? I am back on the bike. Hills are horrendous and I am slow! My bike muscles have gone and it is going to take a long time to build them up again. I am running but again pace is slow and not running for any great length of time. It seems that if I plod (maybe more than plod) I am fine but it is when I push (I think there might be a link to adrenaline but I am not medical so don't take my word for it) something happens and that is when my body rebels and I go downhill, back to the awful heavy exhausted feeling. I have started to write a blog about my recovery. Doing it to help me see improvement (I hope!) but also to maybe help others. I have found it difficult to find anything positive/practical to read during my recovery. On the blog I share the different things I have done to help me get through the past eighteen months. I emphasise that I am not medical but I have always been a very fit, clean living person. The blog is on Wordpress and is called 'Believe!'. I write under the name ' Wisewoodwind62. All the best. Gillian
  14. Hi! I am also about eighteen months post sepsis. When I am tired I do 'forget' words. Not so much the physical act of speaking but putting sentences together in my head and losing a basic, everyday word does happen. It is also exhausting trying to hide that it happens. Tricky as a teaching head teacher!!! I have just come through another 'blip' after a very good January. The past ten days have been difficult with the chronic fatigue weighing me down like a ten ton load. You say that you recognise your speech is difficult when you are tired. My symptoms also get worse when I am tired. If you are a mother of a toddler you will laugh when I say this but somehow we both need to pace ourselves better. Whatever that means in our individual lives. I know a couple of 'extra, unexpected' things happened last week, which meant I did a lot more than planned. I am pretty sure that's what led to the blip. For you, it is maybe resting as soon as your wee one goes to bed? I did phone UK Sepsis Trust yesterday and Larry acknowledged that there are often 'unnerving' blips in our recovery. Maybe knowing that we will have them but that we also get through them will help us. All the best. X
  15. So sorry to read your post. Focus on the good memories you do have. Hard to do that just now but she would want you to do that. I know I would wish that for my children. Xx
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