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 that I can cope with even sitting in my wheelchair. He's off to football which is nice, with his friens. Good for him. It's hard for him too.
But I'm living in a deep freeze.
I shouldn't complain. I had a friend over last night and had a lovely time playing a board game and watching you tube together on the sofa ... Peter kay on car share... red light spells danger ... and a few of the carpool karaoke ones, for a lovely singalong.
But it doesn't change the fact, I'm isolated, spend 95% of my time alone and am immobile with pain. Sorry you lot. Maybe I should stop taking the opiate, although I take less than the minimum dosis and only once in 24 hours. My therapist was good yesterday. It's all a process. Maybe another session with him. Maybe just acceptance and self compassion and that word that we're chained to ... patience.
I'd better get off,
The sun's just come out for me on the sofa. I can take paracetamol again now, maybe that'll help.
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 insight. That's so helpful to have you all here.
i wish I could wave a magic wand , to help you , hopefully one day soon ❤️
i get like that at times so frustrated a little cry is always good I think my hormones play a big part of it , we’ll get through this awful time together
Hello everyone and sorry that I haven’t been about. We went off to a London for a few days but to be honest I found it a struggle . I was diagnosed with ptsd which I’m not surprised about.
anyway, enough about me . Michelle , I am so pleased that you have been given positive news and you are definitely a true warrior and survivor!
Helen, you are going through so much and you are allowed to feel down and in despair at times . Sometimes it must feel like one knock back after the other . But your resilient and fun personality comes through in your texts and you must remember that it is lurking there , ready to surface again.
Michelle is correct, you must be kind to yourself and speak to yourself as you would speak to others in the same situation.
My pain and fatigue keep me from doing a lot with my husband . I encourage him to go go the football, meet up with friends but we still play scrabble , watch a film and just chat together . I like doing sudokus, crosswords etc . They help to distract me . I know that it’s easier said than done but we’re all here for you, through the bad and better times . Did you ask your dr about immuglobulin infusions? My daughter was 39 when the leukaemia was diagnosed . She’s now 41 so maybe her younger years are helping. The treatment put her into early menopause which has been taxing but she’s wading through it.
Dave, we all think about you a lot and hope that you have been having some better days. It’s a long, hard journey but we’re all here for you.
Beaglgirl, I do hope that your husband is responding to treatment and that you are managing to get through this extremely worrying time.
im not surprised at that diagnosis , with what you are going through, my husband goes to play golf , but he doesn’t like to leave me , we enjoy being together watching tv and gardening just chatting
we all get through it in different ways the best we can ❤️ hope all is ok with you Dave & beaglegirl
Thought of you today. Sent you a link to a post on Facebook to a similar issue you have been having. Scleroderma with cracking skin where the wounds do not heal. It looks like UVA1 treatment and UVB has been very successful and some people getting relief quite early on . I know like me you have been finding it so hard and looking for an answer or relief.
Thankyou all to Audrey, Michelle, Beaglegirl for being there. For me I have had little to no progress but hoping to try another immune suppressant soon to see if that helps my fascia and muscle issues. My Myositis turned out to be muscle inflamation from gvhd rather than true Myositis itself as per the rhueumatologists.
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 immunoglobulin IV. They're trying to reduce my ecp at the moment so no room for trying anything new.
Beaglegirl, I too hope hubby is responding to treatment, stable and not struggling with his situation himself, maybe he's not aware of it. Hopefully he'll respond to treatment. It's so hard for you to watch helplessly. This illness has unbelievable outcomes... at least according to a fb photo, and stories that I've read. It's possible that he'll get through this. All of us. Let's be in the now and remember we can't change things, we are as good as helpless, but things can change over a very long time.
I've accepted that it makes no sense for me to get out of bed before lunchtime because of the foot pain and physical wellbeing. I'm better if I just stay horizontal.
I am the same I am in bed until about 1 pm as I can’t mobilise hardly when I am up and I get bored in front of tele all day. My time will come hopefully when my mobility returns I ca start getting up earlier to hopefully go shopping, cook a meal, do a bit of gardening etc Now I just have to rely on food delivery from supermarket and delivery of ready meals which I know are not that good for you.
long time we have not heard from Beaglegirl. I hope she is ok.
I don’t do food shopping , we share cooking when I feel like it , hopefully you’ll get sorted soon , never heard from beaglegirl hope things are a little better
it’s good to hear that despite what you are all going through, you keep going and manage your symptoms as well as possible .
it’s more difficult in the winter when you can’t sit outside and breathe in the fresh air. I’m thinking of buying a patio heater so that I can wrap a blanket round me and sit outside every day for a while .
Dave , things will get better but at the moment you are doing the best that you can and ready meals and home deliveries are a good idea .
i make a menu for the week and then get a Tesco delivery with all the ingredients included. However, I also have “extras” - ready meals in the freezer for my flare up days . So please don’t worry about your eating at the moment. As long as you are eating, you can change your diet when you are up to it.
Helen, I’m constantly thinking about you and the day will come when you tell us that there’s been a noticeable improvement. It’s just such a slow, unpredictable journey for you all . However, I can “feel” the determination that you all have to beat these ghastly symptoms and mind set can really help a lot.
I really don’t know much about ptsd. Our solicitor said that my husband and myself are secondary victims as we were at the scene of the accident. That’s why she referred us to a psychologist who gave the diagnoses. I think we’re going to have 16 sessions with a therapist!
Michelle, you sound so like myself in many ways . I love pottering in the garden, walking and watching telly with hubby. I’m hoping that today is a good day for you to get out for a while.
Anyway, dear friends , I’ll go now and hope that the next few days go smoothly for you all. One day at a time !
I totally agree with everything , we are all so different & cope with things different ways , right what is right for us and take all the help we can get
I also do a menu for a week & get a sainsbury delivery and they are great , I get ready meals for days I don’t feel like much or can’t manage to eat anything is better than nothing
I’m sat looking out of the window with them open so I can feel the fresh air
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 which means I don't get up untill lunchtime, sleep as long as possible but wake and drop off from about 6... take thyroxin first, drop off, meds, a quick pee and then go back to bed and snuggle, drop off, then eye drop, drop off again, then eye ointment, then drop off, then paracetamol, drop off again.. . I feel quite triumphant today, slept till 12.30. Really slept in between all the meds. The paracetamol i take to cover me through the night.
Oh yes, the dermatologie appointment went well. I felt seen and heard. Cortisone creams for a week then tapering. They're going to give me light therapy treatment which is not the one ... not the PUVA, that is high risk for ecp patients..(which both Dave and I are on), but It's called UVA1 and is safe with my 'blood washing' ecp treatment. It'll be 3 days a week plus physio as an outpatient in the university clinic. Starts 16th November. I'll keep you posted. I'm optimistic.
I've had an idea.. what do you think... there seems to be nothing in you tube for gvhd on a personal level, only scientific seminars , which are very good and helpful but not sufferer to sufferer. The Facebook space is great to chat but there doesn't seem to be any personal , sharing of experience, for nutrition, taking meds, fatigue, eyes, skin in you tube.
I thought of doing something and then in the comments, viewers could make their contributions from own experience.
Let me know what you think, maybe I'm mistaken.
. ... Don't get me wrong I'm still very cgvhd, but feel that I can think straight for a while and think about other things for a bit, which is new. Really nice.
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 a bit.
I hope that you’ve all enjoyed some sunshine ( even through glass ) over the last day or two.
Helen, it’s lovely to “ hear “ an upbeat note in your voice. I’m so happy that the dermatology visit went well and they are starting you on light therapy treatment as well as physio. You just needed a plan that sounds as if it could help and now that it’s come along, no wonder you feel uplifted.
I can sense that you are all determined, positive people. Sometimes life throws us hurdles that we shouldn’t have to face but we’re all the same - we plough through and then something positive happens!
Dave, Michelle, Beaglegirl , I’m thinking about you all and hoping that you are having better days .
i agree projects do help , the sunshine has been lovely , yesterday we went out with our 2 year old granddaughter and had a lovely day , so today it’s a quiet day
Comments
Keeping fingers crossed Michelleanne x
Hi Helen
all went well today given me a low dose of antibiotics and referred to a immunologist
Professor very pleased with everything told me not to worry and that I was a survivor
❤️
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
Hi helen
we are all survivors , how’s things with you all ❤️
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 that I can cope with even sitting in my wheelchair. He's off to football which is nice, with his friens. Good for him. It's hard for him too.
But I'm living in a deep freeze.
I shouldn't complain. I had a friend over last night and had a lovely time playing a board game and watching you tube together on the sofa ... Peter kay on car share... red light spells danger ... and a few of the carpool karaoke ones, for a lovely singalong.
But it doesn't change the fact, I'm isolated, spend 95% of my time alone and am immobile with pain. Sorry you lot. Maybe I should stop taking the opiate, although I take less than the minimum dosis and only once in 24 hours. My therapist was good yesterday. It's all a process. Maybe another session with him. Maybe just acceptance and self compassion and that word that we're chained to ... patience.
I'd better get off,
The sun's just come out for me on the sofa. I can take paracetamol again now, maybe that'll help.
I hope you're all plodding along ok.
Love to you all.
Helen
Hi helen
im so sorry to hear how you are , try and not be so hard on your self , you’ve been through so much and are going through so much
I know about feeling lonely I do at times even when there’s people there try and find something you can do with your husband
takeaway and a movie something that will help you both
hope things work with your therapist take care & please be kind to yourself
much love ❤️
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 insight. That's so helpful to have you all here.
Thanks again, sleep well
X
Hi helen
i wish I could wave a magic wand , to help you , hopefully one day soon ❤️
i get like that at times so frustrated a little cry is always good I think my hormones play a big part of it , we’ll get through this awful time together
always here for you take care 🫶🏻❤️
Hello everyone and sorry that I haven’t been about. We went off to a London for a few days but to be honest I found it a struggle . I was diagnosed with ptsd which I’m not surprised about.
anyway, enough about me . Michelle , I am so pleased that you have been given positive news and you are definitely a true warrior and survivor!
Helen, you are going through so much and you are allowed to feel down and in despair at times . Sometimes it must feel like one knock back after the other . But your resilient and fun personality comes through in your texts and you must remember that it is lurking there , ready to surface again.
Michelle is correct, you must be kind to yourself and speak to yourself as you would speak to others in the same situation.
My pain and fatigue keep me from doing a lot with my husband . I encourage him to go go the football, meet up with friends but we still play scrabble , watch a film and just chat together . I like doing sudokus, crosswords etc . They help to distract me . I know that it’s easier said than done but we’re all here for you, through the bad and better times . Did you ask your dr about immuglobulin infusions? My daughter was 39 when the leukaemia was diagnosed . She’s now 41 so maybe her younger years are helping. The treatment put her into early menopause which has been taxing but she’s wading through it.
Dave, we all think about you a lot and hope that you have been having some better days. It’s a long, hard journey but we’re all here for you.
Beaglgirl, I do hope that your husband is responding to treatment and that you are managing to get through this extremely worrying time.
Sending hugs to all my dear friends.
Audrey xx
Hi audrey
im not surprised at that diagnosis , with what you are going through, my husband goes to play golf , but he doesn’t like to leave me , we enjoy being together watching tv and gardening just chatting
we all get through it in different ways the best we can ❤️ hope all is ok with you Dave & beaglegirl
take care all you wonderful people 🫶🏻
Hi Helen,
Thought of you today. Sent you a link to a post on Facebook to a similar issue you have been having. Scleroderma with cracking skin where the wounds do not heal. It looks like UVA1 treatment and UVB has been very successful and some people getting relief quite early on . I know like me you have been finding it so hard and looking for an answer or relief.
Thankyou all to Audrey, Michelle, Beaglegirl for being there. For me I have had little to no progress but hoping to try another immune suppressant soon to see if that helps my fascia and muscle issues. My Myositis turned out to be muscle inflamation from gvhd rather than true Myositis itself as per the rhueumatologists.
all look after yourselves
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 immunoglobulin IV. They're trying to reduce my ecp at the moment so no room for trying anything new.
Beaglegirl, I too hope hubby is responding to treatment, stable and not struggling with his situation himself, maybe he's not aware of it. Hopefully he'll respond to treatment. It's so hard for you to watch helplessly. This illness has unbelievable outcomes... at least according to a fb photo, and stories that I've read. It's possible that he'll get through this. All of us. Let's be in the now and remember we can't change things, we are as good as helpless, but things can change over a very long time.
I've accepted that it makes no sense for me to get out of bed before lunchtime because of the foot pain and physical wellbeing. I'm better if I just stay horizontal.
I'll be off here, love to all.
Helen
Hi all
i don’t rush out of bed early , I try to be positive but sometimes it’s hard but I’m getting there
love to all ❤️
Hi all,
I am the same I am in bed until about 1 pm as I can’t mobilise hardly when I am up and I get bored in front of tele all day. My time will come hopefully when my mobility returns I ca start getting up earlier to hopefully go shopping, cook a meal, do a bit of gardening etc Now I just have to rely on food delivery from supermarket and delivery of ready meals which I know are not that good for you.
long time we have not heard from Beaglegirl. I hope she is ok.
love to you all.
Hi Dave
I don’t do food shopping , we share cooking when I feel like it , hopefully you’ll get sorted soon , never heard from beaglegirl hope things are a little better
take care ❤️
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
Morning helen
hope all goes well , we’ll have our cuppa and a biscuit about 2 today stay strong
lots of love michelleanne❤️
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 behind me.
At the moment eyes, feet, mouth... otherwise feeling ok.
Did you hear about the new drug Dave? It'll take a few years but who knows.
I hope you and the family are ok Audrey.
Love to all, night night,
Helen
Hi helen
You sound a lot brighter and things are a little better
that cuppa sounds good with a nice ginger biscuit to dunk
night night sleep well❤️
Hello everyone
it’s good to hear that despite what you are all going through, you keep going and manage your symptoms as well as possible .
it’s more difficult in the winter when you can’t sit outside and breathe in the fresh air. I’m thinking of buying a patio heater so that I can wrap a blanket round me and sit outside every day for a while .
Dave , things will get better but at the moment you are doing the best that you can and ready meals and home deliveries are a good idea .
i make a menu for the week and then get a Tesco delivery with all the ingredients included. However, I also have “extras” - ready meals in the freezer for my flare up days . So please don’t worry about your eating at the moment. As long as you are eating, you can change your diet when you are up to it.
Helen, I’m constantly thinking about you and the day will come when you tell us that there’s been a noticeable improvement. It’s just such a slow, unpredictable journey for you all . However, I can “feel” the determination that you all have to beat these ghastly symptoms and mind set can really help a lot.
I really don’t know much about ptsd. Our solicitor said that my husband and myself are secondary victims as we were at the scene of the accident. That’s why she referred us to a psychologist who gave the diagnoses. I think we’re going to have 16 sessions with a therapist!
Michelle, you sound so like myself in many ways . I love pottering in the garden, walking and watching telly with hubby. I’m hoping that today is a good day for you to get out for a while.
Anyway, dear friends , I’ll go now and hope that the next few days go smoothly for you all. One day at a time !
Audrey xx
Hi audrey
I totally agree with everything , we are all so different & cope with things different ways , right what is right for us and take all the help we can get
I also do a menu for a week & get a sainsbury delivery and they are great , I get ready meals for days I don’t feel like much or can’t manage to eat anything is better than nothing
I’m sat looking out of the window with them open so I can feel the fresh air
keep strong all my lovely Anthony Nolan family ❤️
It’s a beautiful day here - cold but bright and sunny. I hope that the sun is shining on all my Anthony Nolan friends . Always thinking about you. Xx
Hi all
it is here enjoy your day what ever you are doing ❤️
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 which means I don't get up untill lunchtime, sleep as long as possible but wake and drop off from about 6... take thyroxin first, drop off, meds, a quick pee and then go back to bed and snuggle, drop off, then eye drop, drop off again, then eye ointment, then drop off, then paracetamol, drop off again.. . I feel quite triumphant today, slept till 12.30. Really slept in between all the meds. The paracetamol i take to cover me through the night.
Oh yes, the dermatologie appointment went well. I felt seen and heard. Cortisone creams for a week then tapering. They're going to give me light therapy treatment which is not the one ... not the PUVA, that is high risk for ecp patients..(which both Dave and I are on), but It's called UVA1 and is safe with my 'blood washing' ecp treatment. It'll be 3 days a week plus physio as an outpatient in the university clinic. Starts 16th November. I'll keep you posted. I'm optimistic.
I've had an idea.. what do you think... there seems to be nothing in you tube for gvhd on a personal level, only scientific seminars , which are very good and helpful but not sufferer to sufferer. The Facebook space is great to chat but there doesn't seem to be any personal , sharing of experience, for nutrition, taking meds, fatigue, eyes, skin in you tube.
I thought of doing something and then in the comments, viewers could make their contributions from own experience.
Let me know what you think, maybe I'm mistaken.
. ... Don't get me wrong I'm still very cgvhd, but feel that I can think straight for a while and think about other things for a bit, which is new. Really nice.
Love to you all
Helen
Hi helen
we haven’t heard from beaglegirl in a long while hope everything is ok
you do sound very upbeat at the minute , it’s nice to hear , 🤞that the physio helps
if it helps you and helps other people why not give it a go
it is nice to think of other things for a change ❤️
Thanks Michelleanne,
I'll see how it goes. Like you say, something else to think about and maybe helpful to others.
X
Hi Helen
thats all you can , as long as it’s not too much for you ❤️
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 a bit.
Thank you for your input. Much appreciated.
Love
Helen
hi Everyone
I hope that you’ve all enjoyed some sunshine ( even through glass ) over the last day or two.
Helen, it’s lovely to “ hear “ an upbeat note in your voice. I’m so happy that the dermatology visit went well and they are starting you on light therapy treatment as well as physio. You just needed a plan that sounds as if it could help and now that it’s come along, no wonder you feel uplifted.
I can sense that you are all determined, positive people. Sometimes life throws us hurdles that we shouldn’t have to face but we’re all the same - we plough through and then something positive happens!
Dave, Michelle, Beaglegirl , I’m thinking about you all and hoping that you are having better days .
sending hugs. Xx
Hi all
i agree projects do help , the sunshine has been lovely , yesterday we went out with our 2 year old granddaughter and had a lovely day , so today it’s a quiet day
enjoy life everyday we are all survivors
much love to you all ****