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Discussion Starter · #1 ·
I've just got in from the hospital, after having a dose of rituximab and cyclo. I met a bloke there who was having the same thing for another autoimmune condition that has knackered his lungs - I'd say he was in his thirties, he woke up two years ago coughing up blood, and its been downhill from there. Now he's waiting for a lung transplant. He's on 150mg of pred daily (the highest I've had was sixty, and I thought that was bad!), so now his ribs break when he coughs, and its all a bit nasty.

Anyway, I'm sure you're wondering what the point of my story is... His attitude was amazing, I've never met anyone as upbeat considering how awful he must feel. I think I'm pretty good at not feeling sorry for myself, but he was just kinda inspiring. It just reminded me that things could be a lot worse - and I think its good to remember that sometimes. I don't know if I've put that across very well, my brain is mashed, so I'll stop rambling...
:hehe:
 

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Marika
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Sometimes we need to meet people like him to make us realise it could be a lot worse...which incidently is my mantra. I just often wonder about the poor soul who can't say that..because it really couldn't be worse..if you know what I mean.....
Poor guy ( the one in the hospital ..and you too for having to go there too.

Marika:):):):)
 

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Hi Fairy :)

What a wonderful story :) and what a wonderful person to encounter :). Sometimes people are 'sent' to us in life to remind us of the precious gifts we have. :) I hope this young man's memories stays with you for a long time because your story about him will stay with me :)

What a lot of smilies :):):) !

Thanks for sharing.
How are you doing?

Luv n stuff
Joan:rose:
 

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Hiya Fairy

I am so glad of your story.

I have another. It is not the same, but it has touched me deeply. Amazing atitudes are very grounding.

I attended the funeral of a person I used to nurse a long time ago last week. She died suddenly and unexpectedly and was about 51, so not much older than me. She was disabled from youth, but not birth. She had a wicked sense of humour and was gentle and shrewd. I think she knew us (staff & visitors) before we knew ourselves.

She was buried in a wicker coffin on an eco site, so nothing that was not biodegradable was allowed to go in the coffin or to be left on site. It was a field kept tidy by sheep. You got buried, had your name engraved on a big rock with everybody else on the site, and then when your plot was full (no more than around 20 at most per plot by the looks of it) the little field next door was opened for buriels and your site got planted with a tree for each grave and left as a protected site. It is on the high point of a moor, so tree-less at present, though not in the past, and has sun all day. In futue your little plot will be full of trees with birds and other wildlife and you will be reabsorbed back into nature. No sinister giant chess set monuments on site, if you know what I mean.

The opening song was 'What a Wonderul World' by Louis Armstrong - one of my favourite songs of all times. Made me cry buckets, but not in a bad way. Also played was the song 'Don't Worry - Be Happy' (I am so sorry i cannot remember the proper name or singer) and much more including UB40 songs.

The whole service reflected our friend. Nobody could resist a smile. The lady did good. She had time to plan her own funeral, and the main clear thing is that she was considering the feelings of people she cared about and trying to give us all a message of hope, even though she knew her days were numbered. I felt that she had time to relect on her life and see the good in herself and others, and try to reach out to us all for one final time. She wanted us to have a giggle at her funeral and know she appreciated everybody she knew. This feeling bursted through every second of her special day in the form of music.

We were all offered a tipple of brandy in the mud on the top of the hill whilst freezing in our funeral gear with wellies on ... because that was her favourite tipple... she took it through a staw - 2 if we were in a hurry. She no doubt wanted to warm us up a bit and ge tus p---ed. A full bottle was poured into the grave. I can see her killing herself laughing at those of us trying to drink the stuff knowing we had to drive miles home and we couldn't stand it anyway. Not only that, some of us had forgotten our wellies and were sinking in the mud in our high heels.

I will always remember her cheeky smile and cockeyed grin when we were talking b---oxz and being old miserys.

She loved Meatloaf's 'Bat Out of ****', and though it was not played at her funeral, I think I will attach that song to her remembrance.

What a wise bird. People are so strong and kind, weak and flawed, but ultimately so bl**dy precious.

I salute your recent friend and everybody struggling. It is truly good to be alive. I just wish we didn't have to keep learning how little we know. It is so humbling.

You are so right, Fairy - it is good to remember how fortunate we are and to grasp life by the throat and live it to the best.

Thank you so much for sharing. I have been bouncing between a weird kind of joy and guilt / sadness for a few days, so I needed the opportunity to share something myself ... sometimes it is hard to know where to begin.

Take good care.

:love:
 

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Discussion Starter · #5 ·
I still can't get over how amazing he is - that encounter will definately stay with me for a very long time, and probably give me a kick up the backside when I need it :lol:. I'm good thanks - bit queasy after the cyclo, but nothing that sucking on polo's can't deal with. I get another dose in a fortnight, and then that'll hopefully keep me going ;)

Alwin - I don't really have the words to reply to that. Your friend sounds truly inpsiring; if it's possible to say that a funeral rocked, I'd say that one did. I'm glad my story helped you share.

:hehe:
 

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Nice thread,

I have often been touched by such things and people I have met. When I first became ill quite a few years ago I was working in a language school where I would work with 6 different students every week.

It was a very "intensive" setting and took a lot out of you as the people going there expected more than 100% fom their teachers. The lessons were always based on stories that the students (and teachers) told. Each student would prepare their story the evening before and then share it in class the next day. Because the stories had to be true and the groups were small (4 people max) the stories were often very private and people would tell their group things they had never said before. You can imagine that you learn a lot about the world and about people in such a set up.

I was gradually getting iller but no-one knew what was wrong and the docs put it down to the "stress" of my job (which was very stressful). Most of my students didn't notice and I wasn't the sort who ever really let it show (except once when I actually fell into the whiteboard from a dizzy spell :lol:).

I was, and suppose still am, a very good teacher because I used to give too much of myself. I was always assigned the high level students, the VIPs, government ministers and so on. One week I had a pretty "normal" group and I remember one man who, at break, called me to one side and said that he hoped I wouldn't feel he was interfering but he had noticed that I obviously wasn't well. He wouldn't let it go and sat me down and questioned me about it. He was wondering if it wasn't something like CFS and said that I had to really insist that the doctors do something. I had given up on doctors by that stage but his simple kindness touched me greatly as it was a place where people tended to take and were very selfish if it meant that they would get their money's worth from the school.

When the man had gone home I met up with an acquaintance and he said that he had heard that I had had his best friend in my group. He told me his name and I realised that it was that man. He then told me that the man's thirteen year old son was dying at that time from an inoperable brain tumour. I was amazed. Not once through the week had he mentioned it or let it show. He had just been kind, polite and reserved and had still had the time to think of others.

I remember when I was younger (a lot younger) I used to think that I was the only person in the world who had problems but as you go on in life you realise that everyone is dealing with or has dealt with something in their life and that all that is out there, hidden but nonetheless very present.

I haven't explained all that very well. I am so incredibly tired right now that I really can't think straight.

Katharine
 

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What a lovely thread. The stories brought tears to my eyes and yet uplifted at the same time.

Thank you all for sharing your stories.

Deb
 

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The Other Illinois Tammy
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Fairy,
It is uplifting to always see someone that seems to have all the reason in the world to be mean and grumpy that is just the opposite. It is people like this that inspires us all to remember as bad as it is there is worse and we don't want to be there. It is hard to see something good in lupus so that means we all have to try harder to find it. Maybe we should all post something good that has come from the lupus. I would have to say that mine would be finding this site. I was pretty lonely when I ran across this site and pretty sad about things. If I did not have lupus I would not of been search for answers and come across the site and made some really good friends here. Well it was a thougt of spread cheer for a little bit lol.
Tammy
 
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