Hello, I was diagnosed with Myelofibrosis a year ago after having had Polycethemia for 26years and taking Hydroxycarbamide to keep it under control which enabled me to lead a normal life enjoying long distance walking. Then in Feb 2019 I developed severe pains in my legs and could barely walk. I ended up having a third operation on my back which didn't really help and I tried to carry on with pain killers until I could bare it no more.
18 months ago I moved to be by the sea and have a new haematologist who is brilliant and diagnosed the MF. I'm on various medications including Ruxolitinib, morphine and just started weekly injections of Darbepoetin. At last the pain is under control, I feel very weary at times and sadly am unable to walk more than half a mile without being exhausted but it's worth it to be pain free.
I have lots of help and support and now I have Attendance Allowance I can afford a cleaner and monthly aromatherapy massages.
So my message to other sufferers is don't be afraid to ask for help and don't feel guilty about resting. It's easier for me as I live by myself but I need to be aware not to shut myself away as it can be an effort to contact friends at times.
Maybe someone could tell me how to get on to the MF forum ... I thought I was! 
Hi Mumskaya and a very warm welcome to the Macmillan Community.
The Community is divided into dedicated Cancer Specific Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated MF support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group click on this link> MDS/MPN/ET/PV/myelofibrosis (MF) then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
Do get back to me if you need further help navigating the community.
Hi Mumskaya and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm sorry to read that you have recently been diagnosed with myelofibrosis but it's great that you now have a good haematologist.
The online community is divided up into different support groups and you're currently in the New to the Community group. Clicking here will take you to the one that includes myelofibrosis.
Once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and any treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Mumskaya well done getting a post up in the MF group.
The next time you go into the group do join the group as this will allow you to get email notifications when someone puts up a new post in the group.
Click on this link> MDS/MPN/ET/PV/myelofibrosis (MF) then when the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
