something I found really helpful for the antibiotics is -poor translation- intestinal flora-
last year I was on antibiotics that really grounded me, emotionally floored me… but after that horrible experience I always take “darm flora” (lactobacilli/ bifidobacteria/ streptococcus thermophilus… approximate spelling) .
It even says in the antibiotics paper in the package that it can lead to low mood. Apparently It’s cos the lining of the intestine is where an important ingredient is made for the production of seratonin (as I understand it)the production happens somewhere else in the body but the building blocks are produced in the gut. The capsules of gut flora replaces the necessary ingredient for the “workforce” /bacteria to be able to produce it. It’s made a huge difference to me. Also my GP keeps a note of the antibiotics that work for me and those that don’t.
I wish you luck and strength. They really knock us out… sending love. I hope they work.
Hi ladies . Sorry that I haven’t been here for a while. A lot going on with grandkids and the trial is coming up on the 8th . As you can imagine, a difficult time !
I hope that your latest lot of antibiotics are helping , Michelle and that you’re managing to get out for wee spells in the fresh air
How is the garden coming along, Helen? Are you still having hot weather ? It has been very blowy here which isn’t too good for gardening so will definitely be out tidying up when the wind drops ThinkScotland has a climate if its own!
Anyway, I think about you both a lot and really hoping you are both having a reasonable spell . ❤️❤️
just tried to upload a photo of my Ecosystem… LOL… aka garden.
I’m in love with it but it’s very overgrown.
il be thinking of you and family on 8th.
sending strength and love
Helen
ps. Started more antibiotics today. I have a referral to a urologist to find out what the problem is.
… I forgot to hit send and just found this as a draft.
I went to see Ed Sheeran with my godchild this weekend. We had a disabled parking sticker and I took the wheelchair because of the heat , but didn’t need it.
my Kristin Neff website helped me a lot. It has a few free good resources. Also the learning platform ‘future learn’ helped me get into mindfulness, free online courses created by top universities. About all sorts of topics, but mindfulness and self compassion was the thing I needed then.
You can pay if you want to do a more involved course or get credits for a degree, otherwise, it’s a two week free limit and you can interact with other learners.
I found monash university’s courses really helpful ( they’re in Australia). It explains the science behind the practice and then practical exercises to try it out. It definitely helped me through. … both the physical and the emotional.
I feel for you. It’s so terribly painful without good support. As if we haven’t got enough 🙃. But it’s good to know you’re on the list.
I was lucky … only a few months wait, and mine is quite close by.
night night you two,
love,
helen
ps. Of course it’s very limited here but, if it helps and you’re desperate. X
anthony Nolan also have a call in service. My mum tried them and said it was good just to be able to have a number, but she couldn’t really engage, it was probably too early.
I’ve been thinking of you Auds, and the court case date has come and gone…
8th - 12th July,
I do hope you’ve been able to find strength to get through it. It must be like triggering it all over again. Terrible. You are a hero , even if you don’t feel like it.
i hope the grandchildren have been able to distract you, and that your daughter continues to do well.
Michelleanne, thinking of you too and hoping the gvhd isn’t getting the upper hand.
My gvhd has been partying since they reduced my immune suppressants in January, but now increased again, gone back up, so I can think straight and get stuff done. Relief, but frightened about measles etc. I’m coming to uk in the summer, I’ll need a mask I guess.
ive been reading all your texts and it’s good to hear that you are both getting through the summer without any major setbacks .Michelle, I can empathise with the fatigue but like you, getting out in the fresh air does help a bit and I know from my daughter that being indoors around people is daunting for you all.
Helen, I’m so pleased that the immune suppressants have been increased and making you feel more like yourself . You both have such a difficult journey to navigate but doit to the best of your ability . I’m in awe if you both.
well the court case was brutal and nerve racking and emotional . He was found guilty and has been kept in custody until sentencing in the 13th. Last leg of this journey .
All the kids found it so hard. Lindsay was in bits . I think missing her brother’s funeral and everything that went on as she was so ill, hit her like a sledge hammer . This young man doesn’t know how many lives he’s ruined and he didn’t seem in the least bit remorseful!
But we’re all warriors - ourselves , our family and all our loved ones . We’ll battle our way through all adversity and keep moving forward .
Henry starts school on Wednesday . It’s wonderful that Lindsay can take him on his first day as she missed all Leo’s firsts.
sending love to my two very special. friends . ❤️❤️
Absolutely, Michelle. 3 years since Lindsay’s second transplant and longer for you and Helen . You are all doing amazingly well although I’m quite sure that someday you don’t feel as if you are.
Believe me - you are all warriors and never give up. ❤️❤️
its 5 years for me 18 th august I would say I’m worst now since having Covid
I know it’s a great achievement
I wish I knew more about my donor , our Lilly says he’s famous and that’s why we don’t know 😂 it’s weird knowing you have a twin but you don’t know who they are stay strong my friends ❤️
Comments
Lindsay is like you, Michelle and has to have a venesection every four weeks .
im like you, Helen and have low iron anemia. I’m on twice daily iron tablets but don’t really feel much better . Will just have to be patient.
it so good to hear you upbeat and enjoying the gardening, Helen. I think the three of us have so many ups and downs and for different reasons .
look after yourselves and sending lots of positive vibes . ❤️
My dr told me to take my iron before I go to sleep on an empty stomach. I take a tiny bit of vitamin c in water with it.
cant nibble on things in the evenings though. Shame.
the iron has made a big difference to me.
now I’m just always indoors cos it’s so hot. Can’t cope in the heat.
love to you both,
helen
Hi
we,ve hot spells lovely weather to hot for me unless I’m in the shade
please the iron has helped you
ive just finished another course of antibiotics so see how things ok
take care ❤️
Hello Michelleanne,
something I found really helpful for the antibiotics is -poor translation- intestinal flora-
last year I was on antibiotics that really grounded me, emotionally floored me… but after that horrible experience I always take “darm flora” (lactobacilli/ bifidobacteria/ streptococcus thermophilus… approximate spelling) .
It even says in the antibiotics paper in the package that it can lead to low mood. Apparently It’s cos the lining of the intestine is where an important ingredient is made for the production of seratonin (as I understand it)the production happens somewhere else in the body but the building blocks are produced in the gut. The capsules of gut flora replaces the necessary ingredient for the “workforce” /bacteria to be able to produce it. It’s made a huge difference to me. Also my GP keeps a note of the antibiotics that work for me and those that don’t.
I wish you luck and strength. They really knock us out… sending love. I hope they work.
love to you both
helen
Hi helen
thats interesting , they really do knock us out never mind
❤️
Hi ladies . Sorry that I haven’t been here for a while. A lot going on with grandkids and the trial is coming up on the 8th . As you can imagine, a difficult time !
I hope that your latest lot of antibiotics are helping , Michelle and that you’re managing to get out for wee spells in the fresh air
How is the garden coming along, Helen? Are you still having hot weather ? It has been very blowy here which isn’t too good for gardening so will definitely be out tidying up when the wind drops ThinkScotland has a climate if its own!
Anyway, I think about you both a lot and really hoping you are both having a reasonable spell . ❤️❤️
just tried to upload a photo of my Ecosystem… LOL… aka garden.
I’m in love with it but it’s very overgrown.
il be thinking of you and family on 8th.
sending strength and love
Helen
ps. Started more antibiotics today. I have a referral to a urologist to find out what the problem is.
… I forgot to hit send and just found this as a draft.
I went to see Ed Sheeran with my godchild this weekend. We had a disabled parking sticker and I took the wheelchair because of the heat , but didn’t need it.
it was very special.
night night you two,
love
helen
Hi
Helen you sound so up beat it’s lovely to hear pleased you enjoyed your night out
hope they get to the bottom of your issues
audrey you will be in our thoughts for next week the weather has been so hot I’ve spent a lot of time indoors or in the shade
always here ❤️
I’m writing on the sofa after a deep lunchtime sleep, but things are better since they
re-increased my immunosuppressant again. back to square one but feel ing better for it.
my plan is to try again in a few weeks, this time with my gps help.
it was obviously my gvhd making me struggle and leading to infection. 🙃
I think your difficult day is coming up soon Audrey. I’m sure I can speak for Michelleanne too… we’re thinking of you. Can’t imagine.
I hope your daughter and the children are ok.
love to you both.
helen
Hi
helen that’s good news for you , so pleased to hear things are getting better I’m starting with some counciling today so see how that goes
stay well ❤️
Best of luck.
I hope they can make a positive difference for you.
love
helen
ps. I had negative experience with therapy although didn’t know at the time.
There’s a good woman’s hour on radio 4 about therapy. I found it an eye-opener.
See how it goes there’s a 6 months plus waiting list ❤️
You poor thing.
my Kristin Neff website helped me a lot. It has a few free good resources. Also the learning platform ‘future learn’ helped me get into mindfulness, free online courses created by top universities. About all sorts of topics, but mindfulness and self compassion was the thing I needed then.
You can pay if you want to do a more involved course or get credits for a degree, otherwise, it’s a two week free limit and you can interact with other learners.
I found monash university’s courses really helpful ( they’re in Australia). It explains the science behind the practice and then practical exercises to try it out. It definitely helped me through. … both the physical and the emotional.
I feel for you. It’s so terribly painful without good support. As if we haven’t got enough 🙃. But it’s good to know you’re on the list.
I was lucky … only a few months wait, and mine is quite close by.
night night you two,
love,
helen
ps. Of course it’s very limited here but, if it helps and you’re desperate. X
anthony Nolan also have a call in service. My mum tried them and said it was good just to be able to have a number, but she couldn’t really engage, it was probably too early.
I’ve been thinking of you Auds, and the court case date has come and gone…
8th - 12th July,
I do hope you’ve been able to find strength to get through it. It must be like triggering it all over again. Terrible. You are a hero , even if you don’t feel like it.
i hope the grandchildren have been able to distract you, and that your daughter continues to do well.
Michelleanne, thinking of you too and hoping the gvhd isn’t getting the upper hand.
My gvhd has been partying since they reduced my immune suppressants in January, but now increased again, gone back up, so I can think straight and get stuff done. Relief, but frightened about measles etc. I’m coming to uk in the summer, I’ll need a mask I guess.
bye for now , love to you both,
helen
Hi helen
life isn’t to bad at the moment , enjoying the outside life and the warm sunny weather
when the weather is lovely im not bothered about being around people at a distance
when the weather changes cold then I tend not to go indoors where there are loads of people
enjoy your time in the uk , I keep clear of our grandchildren if they have any germs 😂stay safe 💚
Off to England, new Forest next week.
Black Forest to new Forest 🤭
I hope you’re both keeping ok.
i’m going to do all I can to stay well this time on holiday. Mask, gloves…. I’ll look ridiculous but hopefully will avoid the clinic visits abroad.
love to you both,
helen
ps. I wrote this ages ago but it didn’t send. Probably hit the wrong button 🫣🤭
Hi Helen
not doing to bad , same old problems with fatigue never mind 😂stay safe and enjoy your break ❤️
Hope your chest is better.
x
Hi Michelle and Helen
ive been reading all your texts and it’s good to hear that you are both getting through the summer without any major setbacks .Michelle, I can empathise with the fatigue but like you, getting out in the fresh air does help a bit and I know from my daughter that being indoors around people is daunting for you all.
Helen, I’m so pleased that the immune suppressants have been increased and making you feel more like yourself . You both have such a difficult journey to navigate but doit to the best of your ability . I’m in awe if you both.
well the court case was brutal and nerve racking and emotional . He was found guilty and has been kept in custody until sentencing in the 13th. Last leg of this journey .
All the kids found it so hard. Lindsay was in bits . I think missing her brother’s funeral and everything that went on as she was so ill, hit her like a sledge hammer . This young man doesn’t know how many lives he’s ruined and he didn’t seem in the least bit remorseful!
But we’re all warriors - ourselves , our family and all our loved ones . We’ll battle our way through all adversity and keep moving forward .
Henry starts school on Wednesday . It’s wonderful that Lindsay can take him on his first day as she missed all Leo’s firsts.
sending love to my two very special. friends . ❤️❤️
Hi
it’s been tough journey for you and your family let’s hope it gets a bit easier for you all
starting school that’s a big thing Lindsay will enjoy taking home I bet you will miss him
we do battle through everyday , but we are warriors and we enjoy life as we can ❤️
Absolutely, Michelle. 3 years since Lindsay’s second transplant and longer for you and Helen . You are all doing amazingly well although I’m quite sure that someday you don’t feel as if you are.
Believe me - you are all warriors and never give up. ❤️❤️
Hi auds
its 5 years for me 18 th august I would say I’m worst now since having Covid
I know it’s a great achievement
I wish I knew more about my donor , our Lilly says he’s famous and that’s why we don’t know 😂 it’s weird knowing you have a twin but you don’t know who they are stay strong my friends ❤️