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HelenSpeedwell
Comments
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Thanks Dan, I can read it now. :)
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After just a week on the high dose cortisone cream, "momegalen, fett Creme MomeGalen 1mg/g Fett Creme, from the company Galen. I used it before but carried on walking with bandages and the bandages pulled the softened skin open. This time I've just been barefoot at home and the rare occasion I have to go out, wore my…
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Thanks Dave, That sounds awful for Beaglegirl and her hubby. Poor things. She knows where we are if she needs us. I'll be having the uva1 too as of 16th. With the positive research results from it it looks like it might be a light of hope. It makes me smile, that would be wonderful, even if only tiny steps. We'll be…
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Hello Audrey, Dave, Michelleanne, It's very different I think with a second transplant. I guess every sct is different. We're all on our own very different journeys. I'm glad your daughter's found some strengthening support. It must be a real relief for you yourself too Audrey, great for her. I'm pleased for you all. Ive…
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What a joy for you Michelleanne with your granddaughter! I'm really pleased for you. It warms the cockles of my heart to hear that. We're all doing so well in this terrible place even though it doesn't feel like it at all. We're still here. That's already saying something. We're fighters. Love Helen
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Yes, you're right... there'll be most times when I can do nothing and don't want to either. I'll take it baby steps and won't work on it when it doesn't feel good physically or mentally. Projects seem to really help me get through the day even if I'm not well enough to do anything on them. Just having the feeling lifts me…
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Thanks Michelleanne, I'll see how it goes. Like you say, something else to think about and maybe helpful to others. X
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The link doesn't work
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Hello Audrey, Dave, Michelleanne, I hope Beaglegirl is doing ok. She's very present in her absence. I hope she can feel our energy. (We'd love to hear from you Beaglegirl, whatever's happening for you)) I seem to be picking up a bit.... just at the moment. I've started setting up my meds and having them next to the bed…
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Sounds good Michelleanne, I'm up for that. I'm a bit late, but I can drink it luke warm too. Thanks, I like plenty of milk:) I've got that single room again and can relax. Feeling lucky. I've got to hobble down to the kitchen bit now to get myself a bowl and spoon, I've brought my own food. It's painful but... I'll get it…
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Im just off to the clinic for the overnight ecp. And tomorrow dermatologie. Thank goodness I know you're all with me. You give me strength, thank you. Love Helen
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Hi all, Thanks Dave, I'll check out the link. Auds, how does your ptsd manifest? I thought I'd worked through it really well but just yesterday, after about a year or more, had the start of a panic attack. I could control it better but it's a shame. I hope you can find some peace with it. I still haven't asked about the…
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Thank you Michelleanne For your kind advice that I can put to use. I'm feeling a bit better now but it's still there. I'll remember when I need your kind words. I found it helpful to cry a bit today although I can't produce tears. I'm usually so resilient but it just feels too much at the moment. And no-one has the…
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To be honest, struggling. Thanks for asking Michelleanne. I can see my family moving on and I'm stuck. My adult children flying the nest is all good, I'm pleased for them. But I can tell hubby needs to make a life for himself without me, with able bodied friends, go out and about. I am really limited, can't find any shoes…
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That's great news. I'm really happy to hear that. Wonderful for you to get a bit of positive news. Sleep well, Love Helen
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Keeping fingers crossed Michelleanne x
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Hello all, Hello Auds, I recently saw someone's gvhd story with photoy on fb and I was struck by how youth played a role in their very very very long, but inspiring recovery. How old is your daughter if you don't mind me asking. If she's under 40 I imagine her body has a lot more resilience than post menopausal, after…
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Hello you lovely lot, I was just lying on the sofa listening to a podcast from my favourite BBC radio 4 channel. It's about the values of doing nothing. It's good, positive listening but now I need to think more positively about my future because I have so much bored time. ...hmmmmm... let me think, writing, calligraphy,…
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Thank you Auds You're so kind, and in the face of all you're going through. A star. Your lines help me... don't worry about writing too much. We're all grateful. I might ask about the infusions your daughter's getting, for me. Have peaceful weekends all, Love Helen
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Hi all, Oh my... Dave, thanks for the link. It's absurd reading. It's got nothing to do with the price. It's infuriating. The text explains it's real value. Crazy. ...yes, in for the long haul. It's so debilitating and the pain is the worse. I want them to make me pain free. But this is the real world :(... Maybe in 10…
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Hello all, It's Saturday afternoon and I'm sitting on the terrace going through my phone. Monday in the clinic for the ecp again. It's nice to be outside even if never in the sun. I'm thinking of using my wheelchair to get out a bit. I haven't been out for weeks apart from physio, clinic etc. In car or taxi. Just to be…
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Sorry to hear that Beaglegirl. Something that has worked for me when I'm in an acute phase is self compassion practice. It sounds like you might have to start being strict with yourself. Talk to yourself as if you're your own best friend .... say loving things to yourself, tell yourself to eat something, however little.…
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Hi Michelleanne, hi all, Michelleanne, Antibiotics are known to lower mood. It's not you It's the situation. We're all sending you our love and hope you can feel it. This phase will pass. It will change. My aim is to just to get through today... and that's my aim every day, nothing else. Auds, Dave, sending you my love…
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3 whole weeks. Crossing fingers they can come up with something useful for you. Love Helen
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Thanks Michelleanne. Do you know more about your lungs? X
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Hello all, the dermatologist is quite convinced that I have severe scleroderma and not neurosis. I really quized her cos I'm quite frightened. She'll try and pull my dermatologist appointment forwards and she took photos to send them along with her diagnosis. It sounds like doubled up but she wants me to get another…
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Hi Michelleanne, I hope whatever they decide, top up or something else, is good for you. Patience patience. It's desperation but the only thing we have. I'm sitting here doing calligraphy with a biro and drawing greeting cards. Trying to make myself feel human. At least I'm not on the sofa horizontal, will be in a minute…
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It's true, either laugh or huddle in a corner crying. Ha ha... you did make me laugh. So, ..about the serious stuff... the biscuits...I'm with you on the ginger biscuits and love dunking them. They were something I could eat quite early on .. about 9 months after my sct cos they go to mush, I think I shared it with you…
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Laughing, smiling. You warmed my heart. Thank you Michelleanne. Yes, lots of biscuits :) Any special requests? Crunchy? Fillings? Chocolate? Wafers?
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Hello Michelleanne I've thought the same thing. Do you want to get the kettle on? And I'll bring the biscuits. What a lovely thought. I'm sure the others will find their way to us. Maybe the tea will be cold by then. Helen x