Please read the house rules and keep this community safe for yourself and others.
HelenSpeedwell
Comments
-
Hello all, Audrey, I spoke too soon.... I was brought into the clinic in an ambulance with the emergency doctor yesterday very early. It's dawned on me that they're being very vigilant with your daughter. The fact she's in hospital so often shows how vulnerable she is and therefore they're being very careful with her. I…
-
Hi all, Michelleanne, you poor thing... 10 days is a very long time. It will eventually pass. Patience maybe isn't the word... try just to be in the now and get through each day the best you can. Sounds like a nasty version. Hold on tight, it will pass. I agree with everything Audrey has said. You are so kind and…
-
Interesting... strange, it doesn't sound very profitable. Night night, sleep well:)
-
Hi Dave, I just read this in fb. What do you think she means? Did you see it? It's in response to someone asking about jakavi costs/payments. "My daughter is on it for the same reason and our insurance didn’t cover it at all. Her team helped us and we went through Jakafi and it is free. We had to fill out a bunch of paper…
-
You sound a bit perkier too Dave. I'm pleased for you... its nice for me to know you're in a better space too. .. maybe it'll hold for a few hours... or more. That's my timescale at the moment. We really do feel for each other here. I'll check out the rezurock video, who knows maybe it's cheaper and they'll prefer it in…
-
Just wanted to share with you Dave, I've been watching you tube videos too and have also found it a positive experience. One I quite like was... "chronic Graft vs host disease (GVHD) of skin and connective tissues 2018. I'd love a recommendation if you've got one. There's a very wide variety... of content and quality too.…
-
Just a quicky, I just read through the last messages and feel so very grateful for the understanding and compassion that we share here. Thank you so much. It feels very good and safe. I agree with everything said... Alison, I hope you can read a few of the old posts ... what Dave says is so right, we're here for you, you…
-
I had pneumonia diagnosed 2 weeks ago. Today was the first day I felt I am better and have energy. Is your daughter's viral or bacterial? Mine was viral so I just had to see it through. It really knocked me out for a while. I had extremely low energy levels. .. but I always feel bad so it was difficult to distinguish. ..…
-
I feel uneasy about my last post. I wasn't referring to those we have lost, just the coming and going. Grief is such an intimate private experience. I'm sorry if I was insensitive. Sometimes my wish to 'advise and support' can I'msure, be inappropriate. . Much love to you all, Helen PS. Beaglegirl, we'd love a sign of life…
-
I haven't been admitted for my bronchitis... it was initially slight pneumonia but it thankfully went to just bronchitis... but I do carry a thermometer in my handbag and if I ever develop a temperature I have to go straight in. I was told I should have called an ambulance when I had a nasty turn after my 2nd covid jab. I…
-
Our dear Audrey, Thank you so much. Your kind thoughts really do help. Truly, there is some kind of magic wand going on here, unfortunately without medical power, but lots of loving energy. What about you? How are you coping? Much love to you, and the gang, Helen
-
Hi Dave, Really sorry to hear about your situation. I'm afraid I can't inspire, my mobility is regressing because I can't keep using cortisone cream. I was at the eye clinic today, took about 20 minutes to walk from car park to clinic, no distance. I was turned down for the disability parking... I'll have to reapply. The…
-
Oh dear Michelleanne, Poor you. Do you have to distance from family? Is someone looking after you? Have you got it bad? I've had it twice... every time is different. I hope you have a mild version. Thinking of you, Love Helen
-
Thank you dear Audrey Night night x
-
Dear Beaglegirl, I'm a bit worried about you. Could you just send a sign of life... no need to write, just to knowthat you're still with us. Your goodbye worried me a bit. Sending you love Helen
-
Hi Beaglegirl, You're already someone he would be proud of. You don't need to be sorry about anything. We're here, as and when you want to ... the same for all of us, We're here for each other, and you belong to us too. Please don't feel shame or regret about anything, you have no reason to from our side... you…
-
Hi Beaglegirl, I share Michelleanne's idea. You can share your problems about the dogs with friends or family. .. there are ways around these things, they're only practical, solvable. Problems are completely normal, you can share them with people. We are only normal people here in this little group... you can find good…
-
Hello Beaglegirl From what I understand, the what ifs and panic your experiencing are sadly important steps which can't be got round. They are part of the healing process after your loss. You have to go through it,.... but it is a process you're in... I wonder if there's anything you can do to ease this terrible journey…
-
Dear Beaglegirl, These panic attacks, ifs and buts and physical reactions are very sadly part of acute grief. You are in the initial, very intense phase of grief right now and it will be overpowering. It won't always be like this. Perhaps you could research phases of grief so you know what to expect and can understand what…
-
About the 'stopping ' my ecp. I'm bearing with it till now, preparing my case for my next appointment in 2 and half weeks. The Prof has made a few good points, it's just not the way I would do it. At the moment I'm still within the old timetable. Unfortunately my feet are getting worse again daily... can't keep using…
-
Thank you all for your thoughts, mentally I'm not so bad, considering. It's the physical, chest infection plus losing my mobility again... the physical down after a physical up is always hard. That's it Dave, 1 step forwards 3 back at the moment ... it'll change. The Prof stopped my regular ecp today... said he wants to…
-
Sitting in my room in the clinic. Thanks for sharing all that information about yourselves again. Of course I knew it from 'our beginnings ' but useful to have a recap. It's hard to believe it all. I suppose here would be the best place to recap mine... 2019 meningitis with facial paralysis, breast cancer, mastectomy,…
-
Night night all, xx Just had a good read of all the updates and info... what a wonderful bunch we are. Will chat sometime soon, off in the morning to the clinic. Love Helen
-
Hi Michelleanne, I can get that, it's gruelling all those appointments and every single one reminds us of the reason we're there, very grim. And I also get depressed in the sct outpatients because so many of us look like walking corpses and that really brings me down. My overnights are always sharing a room and often with…
-
You've put it well Dave. I'm thinking of you too. It must be so hard for you. I find the social isolation reeeally challenging myself and yet have family. You're doing so well even though it feels like the opposite I guess. Sorry to hear you've been struggling. I have been too. I don't know what it is. Hopefully the ECP…
-
Thank you for getting in touch Beaglegirl. You're doing just the right thing staying in bed as much as you need. You wont be in bed in 5 years. It's absolutely right for now. You're being kind to yourself. Make sure you've got enough food in and the necessaries. You'll get the funeral behind you. Try to be able to get into…
-
Hello Beaglegirl, I'm very sad to hear your news. You're right, it's not fair... I'm afraid I have no words. Your pain, I can't imagine. I hope you have space and time to let your feelings go. A friend works in palliative care and when I had an unfair bereavement years ago that really shouldn't have been, for medical…
-
I can't find you on fb :(
-
Super!
-
Hi Michelleanne, hello my dear Anthony Nolan family... Please be kind to yourself. It's definitely noone's fault that our social lives have so very radically changed. I've lost people too and they've 'lost' me. It's not a friendship if the will doesn't come from both sides. It wasn'tto be. Thats ok. We're doing very well…