Newbie ET Patient

[Viki7]

Hi Everyone!

I have been a lurker on this site for the past few months since I was diagnosed with ET and JakII positive. It has been really helpful as I have come to terms with it all. Currently I am just taking aspirin but I am quite symptomatic although my count is only around the 400 mark (I have everything it seems except weight loss which frankly is the one thing that this disease causes that I could do with!).

Although it has been quite frightening and disorientating the diagnosis was also a bit of a relief as it finally made sense of diverse symptoms that I had been experiencing for some time.

I need to make some general lifestyle changes to improve my overall health so I decided to do something positive and I have given up all chocolate, sweets, biscuits and cakes this month and have been getting sponsorship for MPN voice to support me through this. It has given me a way to tell my friends what has been happening to me and although I hadn't thought of this one of them said it had been helpful for her to be able to do something without words by donating. It has also made me feel much more positive about things I can still achieve with the uncertainty of ET - so far I have raised £900 - and if anyone is willing to share my just giving page I would be very grateful - justgiving.com/fundraising/...

Thanks for everyone's posts - this has been so helpful for me.

All the best!

[francesb]

Well done on your fundraising and good luck for the future. Best wishes, Frances.

[Viki7 in reply to francesb]

Thank you so much Frances, and all the very best to you. Viki

[Mazcd Partner MPNVoice]

Hi Viki, I've come over all weak and wobbly, and having a bit of a 'turn' at the thought of no chocolate, sweets, cake etc. Even 1 day would be a challenge for me, let alone a WHOLE MONTH, you are extremely BRAVE!!! Seriously though, I think what you are doing is amazing, and thank you so much for supporting MPN Voice, you are brilliant. Maz x x x

I need some chocolate, QUICK!!!!

[Viki7 in reply to Mazcd]

Thanks so much for your reply Maz. Yes I am not quite sure why I thought it was such a great idea!!! I have an incredibly sweet tooth and with the diagnosis just got a bit overindulgent! Hoping that this will break the pattern to stop automatically reaching for the chocolate (Terry's Oranges do count as one of your five a day don't they?!). I am also the only person in my family not to have type 2 diabetes and rather want to keep it that way having enough to contend with as we do! At the moment its a doughnut I want.... roll on 5th December!

[Jellybean129]

Hi Viki

Well done you! What a great way to pass the message on and raise funds. I’m not sure I could give up on all the naughty but nice things in life. I have cut down on sugar and don’t like cake (ok, I’m weird!) but there is NO WAY I will be persuaded off the chocolate! I’m not a chocoholic but when I want some I just have to have some, it’s as simple as that! My excuse it’s the perfect pick me up on the afternoons I’m flattened by fatigue.

All the best to you

Gill x

P.s. Maz, if you are looking for the chocolate, I’ve just eaten it 😁

[Viki7 in reply to Jellybean129]

Hello Gill - thanks so much for your reply. I can only do it on a temporary basis I think! Oh the fatigue! I know - and that was one of the factors that made me decide because when I am tired I find it hard to motivate myself to cook sometimes and then fill up on all the sweets and pastries! Its partly fun and I have found some nice alternatives - if you don't like cake then this probably won't appeal but Twinings just brought out a cherry bakewell flavoured green tea - admittedly this is no substitute for a nice truffle but just about staves off the cravings. All the best.

[Jellybean129 in reply to Viki7]

Eeeooow! Cherry bakewell?! My worst nightmare 😱😱😱!

I know how you feel, though. I must be the world’s most reluctant cook, made even worse by lack of appetite and my family’s need to have a stonker of a meal in the evenings. What’s wrong with a pastry and an apple (the healthy bit!) I say!!

[Mazcd Partner MPNVoice in reply to Jellybean129]

Hi Gill, that's another melt down I am now having, I will find the chocolate, and I will eat it!!! x

[Jellybean129 in reply to Mazcd]

Now you are talking. Melted chocolate? anyone for a fondue?

xx