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Discussion Starter · #1 ·
Hi everyone (especially our Irish members)

Our national broadcaster, RTE, are featuring a woman with Lupus in their series 'How Long will I Live' tonight on RTE1 at 20.30 hours GMT

According to the listing, the programme focusses on improving diet and health.

http://www.rte.ie/tv/listing.html

I will let you know how it went:)

Luv n stuff
Joan:rose:
 

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Thanks Joan, I'll get Mum on to that one :)

Katharine
 

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Hi joan

That's wonderful! :) ooh I wish I could watch it!,any spare room at your place?:hehe:

Yes please let us know,thanks joan!
luv karen x
 

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Discussion Starter · #4 ·
Well it was an excellent little programme:) I was very pleased with it. The woman was 29 years old and worked as a school teacher. She was diagosed seven years ago. She also has fibromyalgia and grade 3 nephritis. She has been on cyclosporine for about three years.

The programme focuses on one person each week. They take baseline bloods and various tests like cholesterol and Blood Pressure, etc and from this information they do a projected life span. Then through a designed programme of better eating and a healthier lifestyle they re-do all the tests in eight weeks and see if they have managed to 'increase' their projected life span. Sounds naff but its actually very informative.

She said her biggest problem was the fatigue so I was delighted to hear that ;) They gave a very good overview and explanation of Lupus. I asked my sister and friend to watch it and both rang me later saying they really understood the disease much better. So that was great! Yay for awareness! Actually my friend said she wanted to take me away for a weekend spa treat :rotfl: What a bonus :lol:

They talked about exercise and what might work for her. She bought a bicycle but she lived on the 2nd floor of an apartment block and it meant lugging the bicycle up and down the stairs before she even sat on it. So that didnt last very long ;) They settled on a fold up bicycle that she could take in the car anywhere and use on the days or times she felt she had enough energy to do so. That worked much better.

Another interesting intervention was from a time management specialist. She had her draw up a chart with a line along the left hand side ranging from one to ten. Ten represented the best day ever when she felt she good do anything and one represented the worst day ever when she felt she good do nothing but lie in bed.

She asked her to consciously decide each day when she got up what number she was that day. So for example her best day ever was a 7. Then she asked her what she could do on those days that might help her on the days when she was a two or one. Food preparation and batch cooking was top of the list. This was to make sure she would have fresh cooked food at all times and there was no need to grab a take-away or snack on junk food, etc.

The chart idea really grabbed my attention. Sometimes it's all too easy to feel like each day is rolling into the next and that because I feel tired most days, they are all the same. In actual fact they're not the same. Forcing oneself to identify how good or bad a day is is something I'm going to start doing. There are days when I can do more and days when I can do less. I just need to start identifying them and getting some more control. It also means that on the very bad days, I can get to acknowledge it, go with it and not beat myself up with guilt because I am lying around doing virtually nothing. Tomorrow is another day and the chart could look very different :)

Interestingly after just eight weeks of eating fresh cooked food and vegetables (no processed food) she lowered her cholesterol level from 6.9 to 4.2 ! Amazing.

On a more realistic note, despite her healthier lifestyle, five weeks into the regime her lupus flared up badly and her kidney blood results had worsened considerably so her medications were increased. The programme makers pointed out that despite ones best efforts, Lupus is a disease that is unpredictable and healthy eating and a healthy lifestyle wont make flares go away. What they will do is make the 'in-between' bits much better and more energised and help to stave off other nasties like diabetes, high blood pressure, etc. They also helped her feel better about herself and that was very much worth the effort.

All in all a very informative little piece.

Cheers
Joan:rose:
 

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Very interesting - do they think she just randomly happened to flare during the period of the show, or did they do something to cause the flare?? Maybe they wouldn't be admitting that anyway if they suspected it, but just wondering if that possibility was mentioned on the show, or if you had thoughts on that from watching?

sf
 

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Discussion Starter · #7 ·
Hi SF

It wasnt possible to tell what made her flare except to say that her Lupus has been continuously active for the past three years anyway to varying degrees so its likely that it was just a coincidence. The biggest adjustments she made were cutting out the processed foods and eating all fresh food with no salt etc and developing a mind-set around her diseases that would increase her motivation levels and 'feel good' factor (using the chart for example to help her determine what kind of day she was having). Those two things obviously had a beneficial effect on her general health and outlook.

From what I could see the programme makers and 'intervention team' didnt do anything that could be considered damaging at all. I was very pleased with how they approached the illness and their understanding and explanation of it. The doctor used a simple way of describing how Lupus affects the immune system. He used a chess board with the pieces being antibodies and antigens. Simple but effective - as one could physically 'see' how the body was attacking itself and knocking out the good guys along the way. They also followed her through a couple of hospital appointments and one with her Nephrologist.

During the programme she also went on a 'working' holiday to Lourdes in France assisting disabled people - so that could also have contributed to her flare up.

Here is a link to a short review on the programme. Im not sure if it can be viewed online. I must investigate that:rolleyes: Im still a bit of a ludite when it comes to these things! The series takes people from all walks of life and tries to help them change their lifestyle to a more healthier one.

http://www.rte.ie/tv/howlongwillyoulive/

Cheers
Joan
 

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That's great Joan, it sounds like it was a really good program, sounds like it was realistic and the link is really interesting reading.It's great if people who watched it will have a better understanding, am glad if your sister and friend have gained an insight, I hope you get your spa trip!

The time management angle sounds very good, the idea of a chart is something I might try myself, it sounds like it could be very helpfull.

Hope you're well Joan

((hugs))
 

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Discussion Starter · #9 ·
Hi Flutter:)

It was great to hear the disease discussed on national television. Anything to create more awareness.... My brother rang me this morning and said 'I saw that programme last night - did you know that that disease cant be cured?' :rolleyes: :rolleyes: :rolleyes: :rolleyes: :rolleyes:

There arent many ways to answer that so I settled for 'Yes, I did know that''....:) Havent I the patience of a Saint??:hehe:

Cheers
Joan
 

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hi joan
i thoiught it was a great show and she was very brave to go on tv.i thought dr mark explained lupus really well i was nervous in case it would be downplayed as i asked my family to watch it but he explained it really well.she did really well didn't she.
 

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Thank you Joan for an excellent report of what sounds like an extremely good programme ! :)
Hugs
Clare
 

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Very interesting Joan, thanks! And thats hilarious about your brother...i mean obviously not funny that people are so ignorant about lupus, but they way you told the story... :lol:

And you can view the video on the site you gave the link to, theres a link at the top of that page that says "watch program 8 here", or go straight to it at this link: http://www.rte.ie/tv/howlongwillyoulive/av_20080227.html

sf
 

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Discussion Starter · #13 ·
Thanks for the direct link SF. I cant believe it could be accessed through the original link:rolleyes: Told you I was a ludite! Its definitely worth watching.

For a brief second or two after my brother made his earth shattering announcement I was tempted to scream hysterically into the phone 'Oh no, Oh no...why are the doctors lying to me!' :hehe: It could have caused a great family dynamic :rotfl:

Cheers
Joan:rose:
 

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Hi Joan,
Very interesting. Thanks for explaining it so well. Dont think I need to watch it now. Very thought provoking. Great stuff.
Sal x
 

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Thanks Joan for posting this. I've just watched it and I think many of us could relate to the girl.

The chart really interested me too as it made her document how she was feeling that day rather than just saying she was fine - don't we all do that? It then gave her pointers as to how much she should try to achieve on those days.

I really felt for her when the doctor told her that her kidney disease was active again.

All in all the programme portrayed lupus very well.

Joan - I think the biggest benefit you got is that some of your friends and family now have a better understanding of what it's like for you and how unpredictable lupus can be. That in itself is worth a small fortune!

Hugz, :hug:

Pam xxx
 

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:lol: Joan you're hilarious!you have a way of putting things that always makes me laugh :)
and yes I do think you have the patience of a saint :lol:

I'm so pleased the programme was so good!..thanks for the link I am off to watch it now...the tea can wait :hehe:

luv karen x
 

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Sorry me again :rolleyes:

Excellent programme!I thought it portrayed lupus very well!..especially the way they didn't try to understate it :)

aww I wanted to give gaye a big hug.

thanks joan x
 

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Discussion Starter · #19 ·
Hi Karen :)

Im glad you liked it. :) Yes, I also felt a very close affinity with Gaye. She is the same age as my daughter and I really felt for her:worried:

Pam, I know what you mean. I could sense the distress in her when the doctor told her that her kidney results weren't good. :worried:

I was so anxious to watch the programme and report back to you all. Isn't it amazing that we are all so pleased when Lupus is featured in the mainstream media? I can feel a campaign coming on..... ;)

I forgot to say thanks to Primrose1960 who alerted me to the screening - otherwise I might have missed it!

Cheers
Joan:rose:
 

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RTE program on Brave Gayle

Hi all,

It was a great program. Very brave and strong girl Gayle.
Great idea about time management and importance of healthy eating to avoid other nasty disease.

My only worry was that Gayle was doing so many outdoor activities, (she is light sensitive and needs factor 50) what with the dog walking for charity, lourdes visits and then the cycling. Im really scared of the sun :mad: and its effect on us Lupies. Would swimming not be better? or indoor cycling? I never go in the sun now am too afraid. What do you all think?

All the best,

Primrose1960
 
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