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HelenSpeedwell
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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
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Here is the explanation from Facebook by Janice Chabros. I'm 5yrs post SCT. Battled gvhd for 3.5yrs. Been off all meds and no major gvhd flares in the last 1.5yrs. I do have very mild skin gvhd that appears as eczema-like patches on my face, but those are simply managed by 1% hydrocortisone cream as needed. The target for…
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Me again, I'll make it quick. I found this from a particularly articulate sufferer on Facebook, a fellow gvhd sufferer. I sent it to the family whatsapp group, and shared it with my local doctor last night. My family found it useful to help understand. My Dr said it's the general level of understanding of most Dr's. My…
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hello all, We are such a good bunch. I just dropped in to see if anyone had written. Oh my, I'm so grateful for this. Facebook is so public, this of course too but it really feels like something special. I just stumbled on the video above and on the mention of spiritual care and wellbeing you all came to mind.…
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Hello you lovely bunch, I'm feeling like I've had enough of this, I can only lie around. But at some point I'll feel like moving.. maybe every few days. My plan today is to fold a bit of clean washing up. It's disappointing for hubby. I can't really do anything and enjoy it. Pain and blood pressure makes it difficult.…
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From what I've read movement and massage are useful. Maybe you can give yourself a sort of massage. Blood circulation is the key. Love Helen
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Have you tried a tens machine? It's supposedly often helpful. I take pregabalin for mine and it helps. 75mg a day. Best, Helen
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Hello all I'm here in the clinic, first ecp behind me. It went well. Tomorrow second and then home again. Thanks Dave. Like you, I'm not moving on. Skin, also fascien issues, scleroderma, elefant skin, ulcers that don't heal... hope they don't go into the bone. I wish I could bandage it but it makes it all weep. Barefoot…
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Pleased to hear he got through the sticky patch Beaglegirl. Thanks for keeping us posted. I hope your chest isn't lung gvhd. Dave told me it's the pits. Although till now between skin eye and intestine I find the eye the worst. You're all with me, thank you Love Helen