It's a life sentence isn't it?

Do you wake up each morning and for a moment forget that you are now different?. I do , then I turn over ,to cramp in my leg muscle ,or my stiff neck.

Maybe a flush. Or numbness in my fingers, it's hard to accept that from now on we will always be different !! How long will it take I wonder ,untill I accept my P.V.

Is my new world !! Twinkly. Xx

12 Replies

  • Hi Twinkly, That doesn't sound like you - you are always so positive! It's much like ageing I guess. How many of us accept that! Ageing itself brings on all sorts of bodily twinges and jolts so what's a few more between friends??!! I must admit that I thought I had left the hot flushes behind with menopause but hey, maybe I'm really still that young!

    You lead such a full life and carefully watch your diet so you are doing everything you can. I guess we can live with our unwelcome disease but I for one (after 20 years) have never accepted it! I say my ET/MF is part of what I am but will never define who I am. Keep Twinkling xx

  • Never,I think Twinkly,I wake up hoping it is all a bad dream.Like you my dogs,GSD's oneEnglish bred ,one just a year old French bred,are a major part of my life.They keep me going,keep me exercised,are very aware that sometimes I am quite unwell, and yes coming to terms with things is sooooo hard.Keep going keep twinkling!

  • Hello Twinkly, I think you have accepted it really - it's how you can forget it. Interesting you mentioned the stiff neck as I have just had three days of pure pain from a stiff neck and realised I seem to get one quite regularly. I was so happy to see the comment from Beetle (about the 20 years bit) as having just moved over to the MF fraternity it really cheered me up to think I will still be bothering my GP when I am in my 80/90's. The flushes are horrid at the moment and the numb toes get so cold even when it's hot. Right there with you and all the other special people. Best wishes to all.

  • It is a life sentence Twinkly. A life sentence that you have dealt with admirably and made changes to your lifestyle to help yourself along the way. It is the days when symptoms rear their ugly heads which remind us so brutally of our bad luck and imperfect health. We all have this to contend with and when we pass once more into a kinder phase we are able to put it more in the background again and get on with our busy lives. You gave me encouragement when depression hit me a few months ago. I subsequently found out that one of my other medications was the cause and is a side effect of it. We all need a bit of encouragement and compassion from time to time and I am so glad to be able to give it you back. You are doing great Twinkly. Keep twinkling and I'll stay crazy. Xxx

  • You are a star ..thank you honey bun . Xx

  • Iv been to hospital today I sat in the scanning unit with my husband ,he had a minor stroke ,now on the mend, .a beautiful young mum with 10 year old son came in he linked to his chemo tubes,.we got chatting ,it's his last day .this year of chemo .he showed me the scar on his shin bone ,"they saved his leg " she beamed ,he has bone cancer .i told her of ruxolitinib my trial drug ,she thanked me for taking it,she has read up on it." Your welcome ," I said, It's o.k. Iv stopped feeling sorry for myself now folks iv just remembered who I am ,and why I'm here,...thank you all for reminding me !! Twinkly ,,,,x

  • Hi Twinkly - as everyone else has said you have dealt with your PV as we all have. I try and keep myself as busy as I am able to and find that helps. Most nights I am in bed by 8 o clock, some days I have worked the whole day, others not. I am pretty tired again now - its hot as well (I don't like good weather, that's terrible, isnt it!!).

    When I do feel sorry for myself (and we all do), I am usually reminded how lucky I am by someone else worse off!

    Keep twinkling!! Aime xx

  • Twinkly you are always so positive and really helpful to many who write on this forum it seemed unusual for you to be negative, but I guess it hits us all at some time. For me when I feel down, I remember friends and relatives who have not made it in this life as far as I have. A good friend who died of bone cancer at age 48 and exactly one month after I was diagnosed with ET and feeling sorry for myself, a very good friend just 18 months younger than me, died very suddenly and it made me realise that there but for the grace of God, in the guise of a vigilant GP, go I. So chin up girl and keep twinkling for us all.

  • Hey Twinkly your a human being with a problem that's scary at times so go ahead and have some down time , as I say tomorrow is another day and things will be better . My cats don't let me be down too long and let's face being on Rux is a hope even though its not working so well for me . So come on , chin up and that's an order from a former senior staff nurse . xxx

  • Hi Twinkly, I cannot add anything new to all the lovely comments above but wanted you to know you are in my thoughts.

    I hope your husband is fully recovered soon (and the young boy you met, I hope he is running around and playing as all 10 year olds should be, very soon). Take care xxx

  • Morning Malachy. Pleased to tell you my husband is mending for the little boy with bone cancer I don't think in my heart. His future is so rosey. When I get those sad moments ,I try to remember how many children I have met on my P.A.T. Dog visits to addenbrooks ,children's units over the 12 years I went visiting ..chatting to sad parents ,but surprised and delighted ,when many went home.dedicated staff there,working to make the difference ,to young lives. If this Majic trial works ,,,,,who knows how many more will be helped . I just hope it makes some improvement .... Keep twinkling Xx

  • I am sure the Majic trial will help many in the future Twinkly. By the way, your positivity is very heartwarming. So pleased your husband is on the mend. Keep Twinkling :-)

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