Need a rant everyone! Have just come home from seeing specialist having had hospital transport. Waited from 10.30 til 12.40 to see him. Transport home not booked so waited 2 1/2 hours for that. Home now at 4.30!!! .?good news is that I "only" have. CALR and not JAK2 - diagnosed 2014 - and have just learned this. So of all the mutations of ET I have the best! No advice - just get on with it. Thanks for bearing with me and sorry for the rant. All good wishes to you all. Mary
How maddening. But good news to finish. If you are in the U.K. You can contact PALS at your local health authority and let them know. It makes a difference.
Hi. Thanks for your reply. What is PALS? I posted yesterday because I was so tired and frustrated - inner resources disappeared - now today I feel so down and useless. One of those "I've had enough" days which a lot of us get. Have been reading Eckhart Tolle's T he Power of Now but now feels rubbish. Feel I need a cuddle from my mum. AAGH. Am hoping a short walk in the woods with my Befriender will help. Am totally shattered but can't relax. How do you all cope on days like this? Thanks for any suggestions and good wishes to everyone. Mary
Oh Mary. You are really going through it. A real trying time. I'm glad you have a nefriender. So good to sound off. Yesterday's stress will have taken it out of you.
PALS is the patient liaison service and every region has one. J
You can let them know when you've had good care and when things have been badly managed. Your experience yesterday would definitely come under the latter. Do let them know.
Good morning , today is a new chance to feel the sun on your face and a new day is an opportunity not to be wasted
These bumps in the road are like a round about, they are there to give us sharp reminders that it is ok to feel frustrated and to be kind to ourselves.
When I am knocked down like this I can't go any further down so I pick myself up and start again. Feeling like you do is common, and natural, and part of your experience. Perhaps some adjustments in the fine tunning is required and not always obvious at first. Big hugs to help with the sting of it.
Take care and keep strong
Consultant/ET. Good morning to you Roger. THank you for your reply . It's perfectly logical in an ideal world which mine is not. You do not know my situation and how many bumps I have to travel . I ranted on Friday because I have no one else to talk to - about anything - so whilst it's true we have to pick ourselves up it isn't quite that easy. All good wishes. Mary
Hi, this is so true.
Occasionally I too swing from feeling overwhelmed to practically flying above the clouds.
However the one thing I am sure about is there is always some one who is willing to listen and does not mind the rant???
Take care and I wish you well.
You are not alone, perhaps Max can put you on touch with a buddy??
ET related fatigue
Newly diagnosed. ET jak2+
Pneumonia With ET
Just saw MPN Specialist | ET+CALR 
Frustrating Appointment
