Hello Audrey, hdllo Michelleanne.
To answer your question, the fatigue is much better but the sclerosis on the ankles make me very limited to what I can do, that’s why I got painkillers, also gvhd of the eyes, they burn and get very dry so I’m not allowed to drive. (Up to then I was able to drive 5-10minute trips) . I also wasn’t sleeping and stairs terribly painful.
But not having fatigue makes me much better able to cope with the gvhd. I’m feeling less like a Zombie, less like an alien is in my body.
I even went to my choir last night. First time in two years. It’s very close, in my village. I was invited to request a song to sing together. I chose “good news”, it’s a gospel song, very celebratory. Moving. I didn’t know I’d get through this. In fact, the doctors weren’t sure either.
I hope it gives you all hope. My friends say my voice has more energy too.
love to you all,
Helen
Hi all, I’m deeply moved by what I just wrote, hubby too. Thank you so much for being there, you’ve strengthened me on my continuing journey.
H
Hi everyone
im just checking in to hear how you are all doing. I really hope that things are going a bit better for you.
my daughter is managing to stay “ stable” at the moment. She’s still very thin but making a good attempt at eating. It’s lovely to see her with her family although I know that she is very fatigued and the little boys have so much energy!
she was at the hospital today and still doesn’t need any bloods or platelets .
she was so ill for so long that I can hardly believe that she’s at home and functioning. I know that she still has a long way to go but I hope this will help others who are starting off in their journey or who are struggling at the moment.
Best Wishes
Audrey
Thanks for updating us Audrey, it feels supportive to think that she’s able to be with her boys. It’s good news and so lets just enjoy it!
I had some good moments over the weekend. Thanks for your post Audrey, it has just reminded me.
Take care,
Helen
PS. Oh yes, before I go… A new dish I discovered today, a little pack of instant noodles including flavouring and oil in tiny sachets. Make the instant noodles according to instructions (3 mins covered in boiling water). When they’re ready add them to a little pan of stir fried thinly sliced baby spinach, thinly sliced carrot, thinly sliced onion, mushroom… whatever you fancy, thinly sliced.
It’s super wet, soft and mushy and tastes of something bearable.
Hi Helen. Thank you for your reply and the recipe. It sounds super quick, easy and tasty!
I’m so pleased to hear that you had some good spells over the weekend. Hang o to all the good moments and they will het more as time goes on.
xx
Thanks Audrey
X
Hi all
audrey it’s so good to hear you’re daughter is improving slowly , and you also helen , I like super noodles , I eat a lot of fish very little meat as a I can’t swallow it ,
it takes so much out of you , I find everyday is a different battle we get through it as long as we are all at home and enjoy everyday and every little thing
keep up the good fight
love & best wishes
michelleanne
Hello all,
That’s it, thank you Michelleanne, they’re called super noodles.
Yes, this site, ie, you lot:) are helping me stay positive and count every tiny blessing.
I’m in the clinic tomorrow for my sclerosis. I’ll keep you posted.
X
Hi Helen
please do I’ve been to see my gp today for steroid and more antibiotics , then bloods taken on Friday and chest X-ray next week , what a exciting life we lead , I hope all goes well for you
xx
Hi all,
Just to follow up… For the sclerosis I just have to keep moving my ankles and applying lots of moisturising cream every few hours.
For the eyes the doctors are not specialised enough and they suggested I go to the eye clinic outpatients in the next few days.
I didn’t get my lab results as they were still working on them. Stupid cos I was ordered extra early to get the results back in time, but they didn’t take blood until I’d been there for 2 hours. I think it’s probably cos my German is good but maybe not good enough.
Anyway, I’ll get off here. A bit typical really, localised symptom treatment as always. I wonder how bad it has to get before they back track on immunsuppressants. I’m on 20mg/day jakavi.
I hope your all having a peaceful evening.
Best of luck to you all,
Helen
Hi helen
I have to moistures not every day , only when it flairs up , hope you’re lab results are ok when they come back , I’m in the uk I don’t get my results on the same day
I’m still on all my meds I was on in the beginning my blood isn’t high enough to come off them
Hope you are peaceful good night god bless
xx
Hi Michelleanne,
When was your sct?
I’m on antibiotics at the moment, my bowels seem to be unsettled with them. I’m taking them prophylactic after a little biopsy. Looking forward to stopping them.
How are you doing? It’s good your blood values are stable, but a shame they’re not improving. I guess being in the now is all we can do anyway.
Thanks for sharing.
Helen
Hi helen
i had my bone marrow transplant 2 years ago I have a 23 year old German man bone marrow
im not too bad got a chest infection so I’m on a lot of meds ,
we take each day as it comes and enjoy
Thankyou for the support it means a lot
xx
Hi Michelle and Helen
i am so sorry that you are both going through so much just now . Michelle, you sound quite similar to my daughter with the chest infection , x ray etc
You are both such warriors and it’s definitely one day at a time.
Unfortunately my daughter is back in hospital . She spiked a temperature having been fighting a cold for some time. They’ve found a bacteria in her blood so more antibiotics . I’m so disappointed for her as her partner and the boys were going to a lodge for a week and now it’s not going to happen. However, like you both, she’s strong and knows in this hard journey that there will be blips along the way. I feel that I’m always on red alert .
I really hope that you get your eyes sorted out, Helen. Probably the eye specialists are the best to help you.
Michelle, like Helen, you are definitely being challenged just now but the medics know what they are doing and will keep you on the tight track.
Sending love and positive thoughts .
Audrey
Hi audrey
sorry to hear you’re daughter is back in hospital , hopefully not for long I went through all of that , it worries me going where there is different people about and strange places , but I love been outside , it will give them something to look forward to later ,
we are all in good hands , we would have been in a sorry state without them
keep safe best wishes xx
Hi Michelle,
Im just checking in and hope that you are feeling a bit better and that with spring round the corner that you will manage to get out and enjoy the fresh air.
my daughter is doing quite well at the moment. She is a bit frustrated at the limitations that goes with the illness and is quite fatigued. But she’s at home with her family and her appetite is improving slowly.
Im always thinking about you, Helen and Dave.
Audrey xx
Hi audrey
not doing too bad , went for my blood tests yesterday and a lung function test , so have to wait for the results , can’t wait for the warmer weather I love to see everything coming to life after the winter.
that’s wonderful news about you’re daughter take each day as it comes I still get very frustrated
everything seems to be going in the right way
always thinking of you all
best wishes& much love
michelleanne
Hi Michelle
Thanks for your reply.
I think everyone who has gone through a transplant is so brave and strong. The journey after the transplant is still such a roller coaster for many. I know this as my daughter had been back in hospital twice since Christmas. However, like everyone, she finds the strength to keep going. I tell her that I can see how far she has come, ever thought she gets frustrated with the slow rate of her progress.
im sure when the weather gets milder and you can get out in the fresh air, this will lift your spirits. You are all my heroes.
sending love
Audrey
Hi audrey
we are all on a roller coaster , I didn’t expect it to be as bad ,
im really looking forward to that enjoying spending time with family
how’s your daughter ?
take care
michelleanne
Hello Audrey,
Thinking of you and your daughter. I’m imagining you’re quiet because you’re enjoying a positive time together, a more stable time. I hope so.
Hi Michelleanne, I hope you’re doing ok too. Riding the waves with trust and self compassion. We’re doing really well under terrible conditions. We can be proud of ourselves.
Love
Helen