Hi all, I'm following on from cathywp's thread in which many people have posted experiences of friends and friendships that haven't gone well when mixed with the illness experience. I thought it worth inviting people to give stories of really good experiences of friendship... What people have said, and done, that made us feel better or validated or precious.
Could be a beautiful and heartening thread, and a place to share good stories of how to be human together.
I've really appreciated the people who have kept in touch over the long term, and have taken the initiative to keep it going when I couldn't. People who can give you just an hour a month, and might send an odd card or short email in between.
The lady who sent me this sentence "I'm so sorry you are feeling like this. I feel sad with you. I hope you know you're not alone".
(I was at such a low point I slept with it under my pillow)
Okay well here goes. Having mentioned on a post on a different community that I’ve been waking choking on goo (severe reflux) during the night and having nose bleeds and eye pain from Sjögren’s - I received a message. A stranger from a related HU community was asking if she could send me a humidifier as a gift as she’s found one very helpful for herself.
She said it would be a way of thanking me for my kindness to others on the forum. I was a bit overwhelmed at this amazing act of generosity and accepted on the basis that I could send her a drawing (I am an artist) in return. She accepted this exchange and I’m now the proud owner of a humidifier - which eases the effects of night time drying out significantly.
That is really a lovely and kind act!! Heartwarming!
I have also experienced a sense of loss over some who just kind of wrote me off (silently) once I became ill, and I was not acting needy or anything. But, there were so many others who surprised me by showing their interest and care, so I chose to focus on those. What a kindness and joy to open my heart to new friends and re-value the continuing friendships. What I wish the others knew: I (or can I say "we") are not actually needy. What makes a difference and shows care is just simply contact and not just once, but periodically - by email or text or phone. And if I know they are on Facebook and can see my posts if they indicate interest or care, that works for me. I don't require visits, but that is wonderful, to feel they care. Very simple really.
I think people think we will drain their energy with our assumed needs. How do you all feel about what I just said?
During the early days of my diagnosis, I would frequent the A&E. I lived with a flatmate, who I think sensed I was unwell. I never disclosed full details about my health to her but she allowed me to use her phone to ring a taxi and told me to "give her a call if I needed anything." This was a small act of kindness that brought me some comfort, during some very dark and lonely days.
Yep all rings true. What I have discovered is that the sick person is the one who has to reach out and make an effort to stay in contact with friends. Should be the other way around one would think!?!
On the flip side people have very busy lives and when I was well I was probably much the same in my behaviour towards sick friends though I was first of the group of family and friends to be ill so don’t really know how I would have reacted - hopefully kindly!
I am a retired doctor but surprisingly remain interested in other people’s problems which is good 👍
H
reducing immunosuppressants
July 19th - Have we been forgotten? 
Anyone have experience of Polymyalgia Rheumatica?
