[nicky00]

Saw the last part of a documentary on the television this evening about an expedition. One of the has Lupus.

Not sure when next 2/4 is on but I watched it tonight and it began at 6.30.

Quote from Yahoo Tv programmes about next episode:-

Extreme Dreams with Ben Fogle - Nepal 2
The Himalayan adventurers are ravaged by the extreme weather as they make their way to the sacred lakes of Panch Pokhari, and it seems Lupus-sufferer Jonna cannot cope with the pace (subtitles) (widescreen)

Nicky

 

[LoopyLoo]

Hi Nicky,

There is a link to this story on St. Thomas website:
http://www.lupus.org.uk/article.php?i=314

A girl called Jonna Sparrow who suffers from Lupus has applied to take part in a programme called 'Extreme Dreams' where members of the public can realise their dreams and conquer some of the world's most extreme environments. Embarking on a voyage of personal discovery each candidate will be tested mentally, physical and emotionally on this journey of a lifetime.

I've been watching too. For those that want to catch up, including previous episodes, the BBC now have an interactive player online where you can catch up. I've posted the link below.

http://www.bbc.co.uk/iplayer/

I catch up with it when I come home from work. Jonna has been struggling to conquer her lupus and has been selected for a trip to Nepal. Apparently one of her group at some point questions her illness.

Hugz,

Pam xxx

 

[nicky00]

Thanks Pam for the info.

It all sounds very interesting dosnt it.

I did not know you could watch previous episodes of BBC programs. I've found it and will watch it all with great anticipation.

Any news by the way of the St Thomas Trial results. I have as yet heard nothing.

Nicky

 

[wheeliefab]

Thanks for providing the link. I think Jonna is very brave to attempt this trip and I'm sure it will help give lupus a higher profile amongst the general public. I hope she can make it to the end allthough personally I worry that she will not (even other healthy members are struggling). Whatever happens what she has done so far is such an achievment, well done to Jonna

 

[LoopyLoo]

My goodness, I've just caught up on the last couple of days and I was in tears watching this poor lass. I don't meant that in a bad way because her strength and courage here is amazing. She wants to prove to people that she's not just 'poor sick Jonna that has lupus'.

They do put a lot of focus on her and her condition but the rest of the trekking team get quite resentful of her because she has to rest so much. You can see she is in obvious agony but still soldiers on!

The presenter, Ben Fogle is so on her side and is determined to get her through the 10 day trek.

It's great that they talk about Lupus and exactly what it is but I feel that they are showing alot of the resentment from the rest of the group for Jonna holding them up - maybe I'm just biast. Go Jonna!!! :lol:

I'd be interested to hear anyone else's opinion on the programme.

Hugz,

Pam xxx

 

[nicky00]

Hi Pam

I have only caught up on the first episode and will watch the 2nd on that link you posted when I get time.

I was slightly frustrated that the program only gave a narrow view lupus and its more general effects. That said .I understand with time- constraints ,editing and creative context why that may be the case.

It just showed her swallowing a very large cocktail of pills ,a brief explaination of the illness, and then her embarking on what was going to be a challenging trek to Nepal.

I take far less pills and have to steer myself out the door to do a little over an hours walk 4 times a week now and that can nearly kill me on some days ( I do more sometimes and less others).

So do you see how confusing that would be to me let alone the general public in understanding how volatile and hard to explain a disease this is.

It made me cry by the way too.
I particularly identified with not wanting to tell the rest of the group, not to be seen as a person with a disease first and foremost, and to achieve something despite having the disease.

Peoples assumptions may be that they refer in everycase to this woman being able despite having lupus to do huge things and will expect the rest of the lupies out there to get off their backsides so to speak,

Or they will realise more of the truth......that despite having lupus people actually invisably do so much to try and function despite everything. The tip of the iceberg is what you see only.

Eagerly anticipating watching the next episode to see if more unfolds to write about!,

The very least I hope this documentary brings is publicity,focus ,awareness and education ..oh and a bit more funding into research as well

Ben Fogle is such a darling

 

[hazel595]

On tuesday night omg I was so incensed with anger at the comments by that hairdresser and that women with the daughter that won't speak to her...............no wonder her daughter won't speak to her.......she's a b*tch.

I can fully understand why Jonna didn't want them to know she had Lupus.....I bet she has already come up against....as we all have at sometime.....the senseless discrimination that some people portray towards us.

The discrimination of healthy people and what we are all up against when you have Lupus or some other autoimmune illness, in fact any illness, could be seen last night and no doubt we will see a lot more of it.

I wanted to climb into the TV on tuesday night........and strangle the hairdresser for being so selfish and uncaring....and as for that lady with the daughter........all I can say is no wonder her daughter won't speak to her.........she said she is doing this so she can show her daughter she loves her.....

She proved that she a selfish, self absorbed, a 'wanna be' 'contrite' person who is not at all being contrite and her daughter will be embarrassed and run further away from a mother that shows herself up as the real person she is in front of TV viewers like me....and I will not be surprised if she finishes the programme being more despised than ever.

Jonna has shown nothing but courage.......strong-will and staying power...and was one of the only one's to ask the young lad with the altitude sickness if he was OK.

The hairdresser.....he just thinks that anyone sick should be left behind......I hope I never go into his Cheshire hairdressers or he would get a right earful off me.

Last night (Wednesday) when the programme was nearing the end it appears that the hairdresser guy got his act together and finally started to have some human feelings. He said he imagined Jonna could of been his daughter and had decided that they were going to all help each other and 'spread' the load. He did help Jonna eventually so that was his saving grace.......

Ben Fogle was brilliant right the way through and in the end even the lady, that is apparently doing it to prove she loves her daughter, acted more like a team member and together with Ben saved another team member from falling over the cliff. The poor girl, after she pulled a muscle in her thigh, just kept collapsing and the doctor decided she was too ill to carry on and was going down in a helicopter.

The lady at loggerheads with Jonna tried to say that lack of food and water and being tired was the reason she flew at Jonna....yeh OK.........wasn't everyone feeling the same....it didn't make the other team members react like that towards Jonna.

I am really feeling for Jonna......I know I would not even attempt to do what she is doing.....twice up and down my own stairs at home and I get fatigued..........

Any programme would be long enough to explain the full extent of Lupus but at least the word Lupus will be remembered by all that watched teh programme as it has been mentioned so many times......

 

[hazel595]

last night's (THURSDAY) episode of extreme dreams saw how strong Jonna really is when she comforted the others and gave the woman that rowed with her about holding everyone back encouraging words..........that is a real strength in a person personality.

One of teh girls had to be taken off the mountain in a helicopter after becoming very weak after a tummy bug and pulling a muscle in her leg. It was heartbreaking to see her having to be helped to get on teh helicopter. I am so glad to see that Jonna's determination is keeping her going even though she is in pain........they are all working as a team now.....

Well done Jonna........we are proud of your achievements so far honey xxx hazel

 

[BigSis]

Well i watched fridays episode.

I couldn,t help but notice that as the trek got harder Jonna seemed to cope better!

it was as if she was used to battling with her body (fatigue and pain) and so could plough on through it on more than equal terms.

I am beginning to believe that our daily battle with lupus does indeed make us strong people.
Go Jonna You have done all lupies a great service.

 

[LoopyLoo]

I've just caught up with it all now - this was a great programme.

Hazel - I'm with you, I was also incensed by Tuesday night's episode.

BigSis - You are so right! Jonna just seemed to go from strength to strength. When the girl got airlifted off the mountain she said that everyone expected it to be her. Jonna was the only one that didn't talk about how she was feeling, she kept it to herself.

I've just watched the last episode and bawled my eyes out when they all made it not just Jonna - bless her she was so emotional.

When they got to the sacred lakes in Nepal it is tradition to take some water and dedicate it to someone - Jonna dedicated it to everyone with a chronic illness that has made them put their life on hold.

Jonna certainly inspired me! I hope St Thommies do a follow up with her in the next newsletter.

 

[ALWIN]

Thank you so much!

I watched / listened to all the episodes in one go today (using the link) whilst doing housework (pc's in kitchen!)

What a marevelous program. I was proud of all of them in the end, to be honest.

Helped me with my dithering too. Sometimes I don't know whether to just go for things in case I get ill. But getting ill is sometimes the lesser evil in my case because I do not (yet?) seem to get too sick - no kidney problems fo example.

It was very inspiring.

 

[LoopyLoo]

Yonna is doing another trek!

I am soooo excited - I've kept up with this programme and now they are doing one final trek with the best members of all the shows!

The final trek is to Venezuela and they have picked Yonna to go!!!!

Keep watching guys at 6.30pm every night or watch it back on BBC iPlayer.

Hugz,

Pam xxx