O,k.who went to the Colchester forum on Wednesday 4 th ,feb ? Lets get some feed back .Im interested in your thoughts ..I went with my Bob .

[Twinkly]

The parking was easy ,it didnt rain ,,I actually really felt it went well .but lets hear from you !

[rubyrubyruby]

Just to say abig THANK YOU to Maz and Claire for organising the forum. I found it useful and enjoyed meeting a few others in the MPN gang ! Such a shame I had to miss most of the ET/PV group part to go to my sons parents evening, I always think that is the best part! If I missed anything useful please could someone let me know.

Thanks

Chloe

[Geoff_mpnfamily in reply to rubyrubyruby]

Hi Chloe, It was great to meet you even though it was brief i don't think you missed much really, it was still on the same subject Magic trial? (I can't remember)

Though we are all unique in regards to the way we all suffer, i asked the very nice lady who said since starting the drug trial she has experienced memory problems (I'd say she was basing this on her own baseline unique to her) if she has ever heard of the 'Spoon Theory'? a very good true story worth reading by anyone who has a chronic illness.

butyoudontlooksick.com/arti...

[Geoff_mpnfamily]

I totally enjoyed it! and i'm definitely going back next year, I wish it was longer really but at the same time i was sinking with feeling ill. I really want to meet up with others local to Colchester before the year is over with for sure.

[Twinkly]

Thank you very much for that spoon story ..nice to put a face to a name at last ,,the one important thing that comes across at our forums ,is the need for support ,,mentally as well as physically ..we need to be positives and strong for each other ,share our successes as well as our set backs ..maybe occasionally we need to "thank "our doctors and nurses ,or the teams helping us on this journey ... Lets not forget they are human too not miracle workers ,,as much as we may wish it ! Xx

[mol56]

I agree, it was good to meet people of all ages with these conditions. I would be happy to meet up in Colchester sometime.

I did make a point of speaking to my haem nurse who happened to be there, to express my appreciation of the good care I have had from Colchester hospital haem team.

I had an interesting chat with Twinkly's husband about possible reasons why we get these diseases, I agreed with him. These forums are a very good way of exchanging views and swapping ideas about how we cope with various symptoms - we are all so different, different life styles and ages and medication regimes but all seem to suffer from extreme fatigue and memory lapses. Support is so important, thanks to MPD VOICE for organizing this forum.