MPN Voice
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Emotionally Exhausted

So this week is a big week in my family, my BABY sister gets married. Baby being 29, my other sister(32) has been married for 10 years in August. I feel like I have been sitting waiting for my life to start; instead of a husband and babies, I got PV.

I don't do feeling sorry for myself, I won't allow my illness to dictate how I feel or ruin any of my days that shoud essentially be good, but today is not a day I can focus on 'normal'

I am only 33 and I've had enough. Today is not a good day - thank god for waterproof mascara!! :-|

8 Replies

Hi Chelle, life can be **** and it is harder some days to cope with having a MPN, I know I get days when I think 'why did I have to get ET, it's not fair', but like you I don't really do feeling sorry for myself, I know I have got a lot of very good things in my life, but still........ I have sent you a private message with my phone number if you want to talk, shout, scream, whatever to someone, I am happy to listen. Maz x x x x


Hi Chelle,

Sorry you're feeling bad today. If you lived near me, we could have gone for a therapeutic run or walk. It's tough dealing with odd, unusual illnesses. When I say I feel tired/cold/sore/stiff, people don't really get it. (Or you get the competitively sick people!) It's easy to feel isolated when you are 1 in 100,000 or whatever the statistic is.

We cannot let this illness or any other define who we are. That takes courage and energy. I hope you feel better soon. Head up, chuck. We are made of sterner stuff than that! I hope you day improves and that you enjoy your sister's wedding this week.



Come on chelle. Let me help you through a dark day , I know iv been there ,you have so much going for you ..youth and looking at your picture you are gorgeous .this awful PV at least don't show ,I do a great job of hiding it to the outside world ,with make up and positive thinking.i eat to feed my strength and it works.. New medication is on the horizon and you are lucky enough to be at an age where you will benefit ..we are here for you ,pile your moans on us ,together we are stronger Twinkly is back, X


I agree with Twinkly you are beautiful - I wish I had your looks!! OK so you don't have a husband or babies, but neither do you have the hassle or heartache that they can bring! You are YOUNG free and single - make the most of it, as much as having PV allows anyway!! All a lot easier said than done, sometimes you do want to shout at the world, but chin up and face the world and the family!! Enjoy the wedding! Think of the support of the others on this site who know what it is like to have an MPN. Hugs!


Hi Chelle

Can I just say that I have seen your posts before and I think you are marvellous. You have had a lot to deal with and seem to handle it so well and be so active and positive. So I thinks its perfectly ok and normal to have a bad day sometimes. I too am generally a very positive person (as they say a glass half full, not half empty person) but there have been times when I have felt p...ed off with it all. I have ET and like you a portal vein thrombosis, and have other health issues too and sometimes have felt why me. At 53 I am older than you but still have lots I would like to do in life. I have generally never felt old, but dealing with it all and the tiredness does sometimes get in the way. I think you should be very proud of yourself and like the other posts have said you are beautiful. I know you don't know me and I only joined group recently compared with others. But If you ever need someone to talk or email I would be very happy to talk to you. Just message me and I'll send you my email and/or phone number. You take care Lizx


Hi Chelle, it is awful to get an MPN at any age never mind when you are so young. But I agree with the others you are lovely, young and beautiful and hopefully today you have had a better day? I was 34 when I met my partner, referred to the haem two years later after high platelets for a long while. At 37 I had my first baby and my platelets went back to normal. I had my second baby at 40 and my platelets stayed down for another couple of years. They are 7 and 10 now. My point is you never know what good things are around the corner. Private mesage me if you ever want to talk. xxx


Hi Chelle, really hope you feeling better and that the wedding went off well with lots of love and laughter. You are only human (a beautiful human at that) and there are days when positive thinking is really hard. Some days I want to choke the person who says 'stay positive' to me. To me who is almost 67, your age seems so very young - my youngest son married last year at 43 and his elder brother is still looking! I punch a big cushion when I am really feeling enough is enough and my husband is pleased to note this as he sees how strong my punches are......

Seriously, it is scary when we feel down but you have such a lovely way of writing encouragement to others so hopefully you will gain some uplift from us in return. Big hug x


Wow I was really down wasn't I..... Mixture of being tired and emotional amount general PV rubbish!!! Lol. Thank you for your kinds worlds. I'm doing much was amazing and my sister looked beautiful. My virtual friends come to the rescues once again.


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