I recently wrote a post titled 'Frustrated'.
I would like to apologise to anyone who has taken offence to my words. I did follow up with an apology of sorts saying that I was having a grumpy day, but this has been generally ignored.
So I will say again... please do not feel offended by the 'frustrated' post. I was just feeling particularly down on that day and I'm so sorry. I'm sure you've all been there.
Please don’t feel bad about having a rant - we can all understand. And the title of the post should have given us ample warning! I wish you all the best.
Hi Rob,
Kind Thoughts to you all the way from New Zealand. I also have ET and have experienced many times when I have been frustrated and angry, and just plain miserable as a consequence of not feeling well, and not being able to cope with all the "stuff" that demands to be done in life, but I don't always manage to find the energy to do now. I got this thing in my late 50s, and I really feel for you and for the others who have been landed with this much earlier in life. Definitely no offence taken to your "frustrated" post, and I hope that you are able to feel welcome here.
Peter
Thank you for your kind words. I really do appreciate it.
Don't beat yourself up Rob, i've been there,bought the tee-shirt as they say! I actually replied and stated it was quite a bit insulting to a lot of older people and implied that they had 'lived' their lives already and they didn't have to worry about children growing up and have a financial burden in case they struggled with full-time work. I also used a cheeky bit of humour in it and said i hope your had a sense of humour! I sure everyone will understand and accept the apology given. I don't think anyone of us haven't been guilty in the past of 'thinking' why me. I was diagnosed at 38 and after reading that et was mainly diagnosed later in life,i remember thinking "well why the hell have i got it" or words to that effect,they might have been a bit stronger!!. I do hope your feel better in yourself rob because it is hard when you have young children and you have to cope with worries and especially if you have a high symptom burden and have young children. Put it behind you rob, you've apologised, the past is the past, i'm sure we can all put our 🥊 away🤣 and understand you were having a bad day. Kindest regards,tina.🤗
Hi Rob43 ET,
I’m sure if I had been diagnosed with ET at a young age I wouldn’t have had the same outlook that I have now, which on the whole is an accepting one.
I hope that you’re feeling ok now and that you continue to be part of this forum.
Mary x
Dear Rob 43 ET, We have all had bad grumpy days. It is good to vent. Wish you more good days than grumpy ones!!
OK Rob all is forgotten. I hope you're feeling as well as can be and you are welcome to ask anything that you want concerning this illness. People in here will answer. Take care
Rob -- this is very thoughtful. This disease is so frustrating and difficult, and it can be such a help to have a vent about it with people who understand. I know it's helped me. Take good care.
Kim
Hi Rob,
I’m 57 PV Jak2+ and have a family though my 2 girls are a bit older now. Been diagnosed 3 years but can remember symptoms back to teenage years. I struggled to work full time then part time and eventually my employer suggested that they put me on long term sick. It’s been difficult financially but I concentrate on looking after myself (except when I go to the pub, oh did I mention I live in Scotland too). There are many things which alter people’s point of view, not just age. I like many others have other medical issues which also skew our outlook so it’s not that straight forward for any of us, we all have to deal with it. It isn’t easy and the worst part for me is reading about young people dealing with this cancer or people around the world at risk because they can’t afford medication. We’re lucky enough to have a free NHS which isn’t always perfect but in my case seems to be getting a lot better. I recently found out that my local NHS has now got an MPN Specialist Nurse and the Specialist I now see is far more clued up on my condition. She actually apologised for my previous treatment.
Anyway, good luck in your efforts, make sure you still enjoy yourself (everything in moderation, except beer 🍺) and look after yourself.
Cheers,
Donald
Wow! An MPN specialist nurse in Scotland?? Is she at the Beatson?
Hi Donald,
I am likely to be moving back to Scotland by the summer, can you tell me what region you’re in? I'm after any recommendations, I’ve been very well looked after so far in both London d Lincolnshire so would like it to continue.
Thanks
Vicki
Hi Vicki,
I'm in Fife. But I'm aware of similar Specialist Nurse up North although not sure if its Aberdeen or Inverness. I've also started doing my bloods at with local medical practice nurse so that they get sent to the lab a couple of days before my appointment and the results are ready when I go to the hospital. Saves waiting around for the lab to process on the day.
Donald
No offence taken. Never was! Actually the thread raised some interesting issues. Glad you’ve de-grumped. It’s a bit of a rollercoaster this MPN business. Wishing you well.
We have all been there, take a deep breath and keep asking questions, if you get answers anywhere it will be from people on a similar journey. It’s scary but your not alone. Wish you well.
No problem at all. I'm Still trying to get some perspective. So all points of views considered.
Hi Rob, you are allowed to vent. Sometimes this is the safest place as those around us don't always understand. Never be afraid to have a rant if you need it, it's much more healthy than bottling it up. You did make it quite clear from the title of your post that you were frustrated. Hoping you aren't so much so now. Best wishes, take care x
Hello Rob I dont think there is anyone on this site who hasnt felt the same as you at some time.I hope you are now feeling better in youself. Our son has had PMF since he was 37 so know how we all felt It will get better to cope with.
Bye Gill
Everybody has grumpy days but that’s what this forum is for. Our friends and families may empathize but nobody can relate to you better than we can. Please continue to post, good and bad. We are here for you.
Hey! Rant all you need to - there is no need to apologise I am sure. Having a good old rant and moan on the computer is far better than languishing alone and harming yourself. Take it easy - best wishes!
We often get frustrated with this, the frustration is almost worse than the illness. I wish you many blessings
I completely understand and have done the same thing myself. I’ve felt regret about speaking negatively when I’m stressed and feeling alone in this illness. I want you to know that I hear you and certainly don’t feel offended. I’m here to support and to learn.
Hi Rob, forget about it! It may actually be helpful to hear that others feel the same way we all do at some times- frustrated at having this disease.
Hi Rob43ET, like the others have said, venting, supporting, getting support, help, advice, knowledge, making friends is all what this forum is about.
If we can’t support one another and we understand exactly how each other are feeling, then who can empathise with us. It’s so difficult for family or friends to put themselves in our shoes because they are so close to us too and they worry, we worry and relationships can suffer. I’ve always said: thank goodness for this forum. It helped me immensely on my journey and my aim is to repay that by helping as much as I can.
Never be scared to vent, cry, etc, E hugs can reach you. Kindest regards Aime xx😻😻
It’s ok Rob. We all need a rant sometimes! You are not alone. Take care🙂
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