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TAlk by Kettli Mazzoco on burden of symptoms of ET

I wonder if anyone saw the lecture by Kettli Mazzoco some time ago. I have bloomed for it on line but cannot trace it. It was given during a range of talks but this is the only info. I have. TOok some notes but it would be helpful if it could be traced as I am finally seeing a counsellor and would like her to see it. I would be so grateful if anyone can help and thank you for putting yourselves to the trouble of letting me know. With all my best wishes. Mary

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I searched on you tube and some of her talks are listed here. I hope it was one of them 🙂

m.youtube.com/results?q=Ket...

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I don’t know whether that first talk was the one Mary was referring to - but it is really interesting. Lots of light bulb moments. Would have loved to have heard her expand on the earlier elements of her talk about patient / family psychological and emotional response to living with an MPN and a chronic disease. Feel it will resonate with a lot of posters on this Forum. Do check out.

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Hi fee 13. That is it exactly. The MPN Conference. Thank you so very much for your trouble. Very good wishes and thanks. Mary.

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Thankyou for mentioning this video, I just watched & it’s so good, sadly we don’t all have the family communication she mentions but it helps just to explain it & not feel so isolated I did make the alterations to my life naturally & am on the way to resilience but people don’t understand what you’re doing & why so that talk really helped

Thankyou

Melanie

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Kettli Mazzoco talk. H Melanie. I am interested to hear how you made alterations to your life naturally. Could I trouble you to let me know please. I have been very unwell since diagnosis of ET in 2014 and am finding things a huge struggle. Don't have any friends - most have died - and am very. Isolated. Energy levels at an all time low. In anticipation and thanks. Mary

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Hello Mary

Sorry I worded that wrongly, I didn’t mean I was doing anything natural to help the illness just that I had changed things like my work & trying not to have stressful people around, not always easy & also doing less & resting when I can

Friends is hard, Im quite isolated too but actually find it better at the moment to talk to strangers where I don’t have to go into depth about anything which usually ends in a bit of a disagreement if I say I’m worried about the future, With people saying ‘you could be hit by a bus tomorrow’ & helpful things like that

Probably not healthy or dealing with things but I just do what I feel is easier for me

I hope it goes well with the counselling Mary

Best wishes

Melanie

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Hi Mary, I was wondering how you are? I know you have had a really difficult time with your health and with loneliness and hope that your councillor is helpful. Anyway I just wanted to send you my very best wishes all the way from the other side of the world! Peter xx

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Hi Peter. Thank you so much for your kind post. Am still struggling and am still waiting to see a counsellor - hoping to find a way of living a life like this. I find fatigue the hardest thing to deal with because I am by nature very active and independent. Because I also have 2 other chronic illnesses it. Makes things even harder and. Like ET there are no cures. So I'm struggling on (like many of us) and hope things will eventually improve. Sending you my very best wishes. Mary

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Hi Mary,

Very good to hear from you, I do think of you quite a bit when I am on the forum. I have certainly experienced some fairly "gloomy" times through the ET and earlier through back and shoulder injuries, but the loneliness and isolation of being ill or injured is probably the toughest thing of all. I do hope that your counsellor proves to be a good one. I expect that it will take a few sessions with them to feel a real rapport, but I hope you are able "unburden" and feel supported and understood. I am glad that you are on the forum here, and hope we are able to help.

We are starting to move towards winter here. Blustery southerlies (our cold winds) are turning willows to autumn tints, and poplars have mostly lost their leaves already. Still can be warm some days, but can rapidly change. We are close to the sea here, and I love the colour of the water on wintry days. Often there are dark cloud shadows racing across the bay, and the sea can be almost blue-black near the horizon when the wind is fierce out there! Moments later the water can be all lit up by the sun and rather Mediterranean and idyllic! All rather fun!

Peter xx

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Kettli Mazocco talk. Hi Peter. Third time lucky! Have sent two posts but they don't appear to have downloaded. Am a complete geek with this machine but hopefully I've pressed the right buttons. Can you let me know if you've received this please then I can reply properly. Fingers crossed! Mary.

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Hello Mary,

Happy to report that you have pressed the right buttons and we are receiving you loud and clear! :-)

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