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HelenSpeedwell
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You poor thing. my Kristin Neff website helped me a lot. It has a few free good resources. Also the learning platform ‘future learn’ helped me get into mindfulness, free online courses created by top universities. About all sorts of topics, but mindfulness and self compassion was the thing I needed then. You can pay if you…
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Best of luck. I hope they can make a positive difference for you. love helen ps. I had negative experience with therapy although didn’t know at the time. There’s a good woman’s hour on radio 4 about therapy. I found it an eye-opener.
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I’m writing on the sofa after a deep lunchtime sleep, but things are better since they re-increased my immunosuppressant again. back to square one but feel ing better for it. my plan is to try again in a few weeks, this time with my gps help. it was obviously my gvhd making me struggle and leading to infection. 🙃 I think…
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just tried to upload a photo of my Ecosystem… LOL… aka garden. I’m in love with it but it’s very overgrown. il be thinking of you and family on 8th. sending strength and love Helen ps. Started more antibiotics today. I have a referral to a urologist to find out what the problem is. … I forgot to hit send and just found…
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Hello Michelleanne, something I found really helpful for the antibiotics is -poor translation- intestinal flora- last year I was on antibiotics that really grounded me, emotionally floored me… but after that horrible experience I always take “darm flora” (lactobacilli/ bifidobacteria/ streptococcus thermophilus……
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My dr told me to take my iron before I go to sleep on an empty stomach. I take a tiny bit of vitamin c in water with it. cant nibble on things in the evenings though. Shame. the iron has made a big difference to me. now I’m just always indoors cos it’s so hot. Can’t cope in the heat. love to you both, helen
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Lovely to hear from you both and to hear that about your daughter! Wonderful… it’s making me smile now writing… great news, inspiring. sorry to hear about your chest Michelleanne, that’s been going on for ages. I was just reading the side effects of Myfortic, and chest is one of them. I hope they keep onto it and try to…
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Hello again you two, I was just listening to this very special podcast, and had to think of you Audrey. Link at the bottom Such a strong woman. love to you both Helen https://www.bbc.co.uk/sounds/play/b01hdqmd?partner=uk.co.bbc&origin=share-mobile
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Thank you all for your support. this site has been very helpful for me. best helen:)
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I’m so grateful for every day that your daughter gets with her children Audrey. Every moment. Your daughter is relatively young and research is going a pace at the moment for gvhd. I live near a city where one of our doctors won a very special prize for his research into the field, a study which I turned down. and maybe…
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good evening, off to bed, but just saw your messages. Nice to hear from you. touch wood you were able to stay away from the chickenpox Michelleanne, a bit of a worry. Audrey, I hope the colonoscopy wasn’t as bad as you thought. I got a small anaesthetic before the big anaesthetic and slept like a log through it all. You’re…
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it’s touching that you’re in awe of us Audrey , thank you… it doesn’t feel like awe inspiring , just trying to get through. That’s wonderful news about your daughter Audrey. I hope she can enjoy a bit of fun with the boys. It has brought me a smile and lifted my spirits. Thank you for sharing that with us. I’m so very…
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The mention is right at the end… you could skip most of it. night night xx
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Just been listening to a stand up comedian on radio 4… he mentioned Anthony Nolan :) that was a lovely moment. here a link , it’s on Sounds app if you have it. It’s strong language sort of thing, but he made me laugh. enjoy 😘
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hello you two, I shouldn’t be on my mobile… I’m trying to use it less. But I just came home, first time out for ages due to my nasty cold. And I had to say Michelleanne, you were right… the longer warmer days bring a blessing. I just popped into our village and ‘bumped in to people “ as they say. It really did me the world…
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Hello you two, Ive been a bit poorly, only a normal cold but it has grounded me for a few days…you know how it is… reading your posts … you understand. Of course worried it could go to my lungs etc, I have to be patient with myself, I can’t change it. Audrey, we’re grateful that you can feel our trust and share with us.…
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Sending love Michelleanne… spring’s coming
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That’s so funny… I was just reading your posts.. hubby walks in and , by way of explanation I say, it’s my little group… the one Dave was in… and now I’ve read your posts and you both mention him. I think , if he is with us, he’s feeling quite pleased that he’s still very present here… that’s lovely., thanks Dave😘 I do…
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Thank you our dear Audrey, thank you very much for that little “pick me up”. You are a treasure. And you’re right too, the plants are starting to get ready to burst. spring is definitely in the air down here in the Black Forest. Although grey today… I’m on the sofa, just snuggled down for a rest. you’re both with me…
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That’s lovely to hear you’re content at home. I am too, I wouldn’t want to be anywhere else. But I just feel physically challenged and would love to get a bit of that independence back from life before the illness. I guess it’s up to me. love Helen
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Oh my … I could have written that myself Michelleanne, it doesn’t change anything but it’s warming to know we’re in this together. I’m just so low on motivation for absolutely anything… perhaps spring will change things a bit. i hope you’re both doing ok and your chest is a bit productive Michelleanne. the days are at…
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Your message warmed my heart Audrey. Thanks for checking in. I’m having a very shapeless, nothingy day so your message has been a little highlight. I hope your daughter is keeping positive. yes, I agree, Michelle, you’re going to help a very lucky person. much love to you both, Helen
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hello Michelle Anne, Nice to see we got back in to the forum. I had a check up today, they’re trying to reduce my medication so that my mobility gets better. The experienced dr that I know well was good, but there was an inexperienced young trainee who wound me up. He tried to tell me that my deterioration in energy,…
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hi Audrey, Michelleanne, Alison, hopefully your phone settings mean you’ll get a notification for this … yes, the forum is back up and running for us🤗 after a little break. I hope you’re all ok. … and your chest is better Michelleanne. crossing fingers and thumbs for you😍 I hope life is moving on for you and your family…
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Oh Michelleanne, good on you! you’ll be a great buddy, it’ll make so much difference to someone like us. Is it organised by Anthony Nolan? please keep us updated on how it goes, … ie if it’s doable. I think I’d be frightened of getting too deep into negative dark space. My ECP trips overnight sometimes really affect me for…
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I was in an interview today in my clinic. A student is writing a thesis on the needs of gvhd patients and recorded the interview one and a half hours, quite intense. It was quite emotional. Of course I had to mention our Dave and Anthony Nolan and our group. night night you three, love Helen
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That’s a bit weird , must be a feeling… I haven’t been around for ages and just by chance popped in… and here you are, i hope you’re coping somehow Audrey, can’t imagine how, I’m sending a hug… and a hello to your daughter and the children… a hello from Germany:) so far away! sad to hear you’re struggling Alison. Grieving…
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I wrote the message at the bottom ages ago, but forgot to post. so sorry to hear about hubby Audrey. I hope he’s picking up after the major surgery. It’s our age… we’re really noticing it here too. It feels like we’re getting old in speeded up time lapse. My eyes are making a difference still, but it is treating the…
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guess it won’t help , but mucosolvan… plenty of it.. and many months and months hoping and lots of drinking water helped my cough in the end… but I think you’ve had yours about a year already Michelleanne. I do hope it goes eventually. Is it productive or dry? Ive found a good resource from Harvard medical school. I just…