just joined, recent diagnosis .. very confused

[heathermc]

recently diagnosed, and very confused, I am trying not to panic but now have to take asprin ach day. feeling overwhelmed is this ususal. im low risk which I know is good. just feel very tired is this ususal

[Helpatlast]

Hello Heather feeling for you. I know when you get the diagnosis it takes some time to come to terms with ... But very glad you are low risk and just using aspirin for treatment for now. Keep logged in with the forum to learn and ask anything you want help with and use MPD Voice as it's most supportive. Yes tiredness is part of a MPN but it does come and go ... In time you learn how to handle it and the perimeters that you can work within that are manageable for you. You will have times when you feel very tired but when its like that just go with it and rest as you need to, sometimes you do just want to sleep or as I find stare in to space and just no energy to get up and do too much. But then it passes and you feel your old self for a period of days or even weeks and that's the time to enjoy it and get things done, and as I said you will find the perimeters you can go to when you feel good and it does help a lot to know your limits and work within them. You don't mention which MPN you have, I am ET for 7 years on Hydrea and aspirin .....but doing ok ....don't worry you will manage your condition as you come to adjust.

All the best

[Tinkerbell13]

Hi Heather, sure your reaction is most normal and good you are low risk. Yes, the feeling of being tired is very frequent and sometimes comes in waves. Wise advice given to me was to pace myself. Good using this forum as you find lots of people similar to yourself and it is reassuring and as you get used to it all, you can find yourself encouraging others too, which is great. But when first diagnosed it is a shock and know we all hugely sympathise with you! Best wishes Tinkerbell

[Titatagg]

Hi Heather.

I can remember the panic, shock, fear and overwhelming helplessness when I was first diagnosed. You are not alone. My advice would be to be your own expert. Find out every thing there is to know about MPD's this site is excellent. Thank goodness for the net. Find the best specialist in your area. Our illness is rare and many Heamatologists don't know enough about it. Keep healthy, eat well, go for walks, sleep well, this will help you stay positive and up beat which is the best medicine. If you get a wave of tiredness many people say that if they continue as normal and work through it it goes away quicker.I am a working Mum and often have no option but to keep going but it can feel like you are wading through treacle . It can be difficult as this is not going away any time soon and because outwardly we all look fit and well it can be hard for friends and family to understand. I have a diary where I log physical and emotional symptoms then I can avoid any thing that makes me feel rubbish and visa-versa. Just remember you will have a long life and you just have to find the way around the tiredness and any other symptoms that may rear their ugly head. At least if you need a day on the sofa watching movies you don't need to feel guilty

Take good care of yourself

[rubyrubyruby]

Hi. I totally agree with the other comments. I have ET, low risk and on aspirin too, but I have days when I am completely knackered! Feeling overwhelmed is exactly what I felt when I was diagnosed nearly 3 years ago too.

Take care

[Mazcd Partner MPNVoice]

Hi Heathermc, welcome to the forum, you will see that it is very supportive and friendly, a great place to ask questions. I would encourage you to read all you can about your MPN, our website has a lot of very good information on it mpdvoice.org.uk. If you have any questions please ask, we are here to help and support you, and if you feel that having a buddy to talk to will help you then please email me at [e-mail] and I can send you the details. Kind regards, Maz.

[lizzieET]

Hi Heather. I agree with everything that's been said. I have ET, on hydroxycarbemide and aspirin and my body has got used to them. I've also cut sugar and processed food out of my diet in the last 2 months pretty much and feel LOADS better - I don't have the energy dips I used to have and sleep really well, the occasional itching I had has disappeared too, so I'm a bit of an advocate for low sugar, no processed food eating!

The folk on here are really helpful and it's just good to know there are ours out there who understand.

Liz

[mcints2]

Heathermc, First of all, so glad you found your way to HealthUnlocked. You'll get a lot of input and support here. Since I am neither a patient nor a doctor, I will leave it to those folks to respond to your question about being tired (although I hear it's a very common symptom of CLL). As a patient advocate, though, I thought you might like to visit the following site and watch this video: patientpower.info/video/adv...

Best to you as you start your Living Well with CLL journey.

[malachy]

Hi Heather, so sorry about your diagnosis but really glad you found us! I am ET jak2+, currently only on aspirin and felt exactly as you do when diagnosed 2 years ago. This feeling does get better, honest. I get really tired too and all the advice given is really good. I try to drink plenty of water, get some early nights, excercise and keep stress to a minimum, which granted, is difficult when worrying! Try and come to the London Forum, they are really good and we get to meet others with MPN '! Take care x

[Aime]

Hi Heather, sorry you are feeling confused and frightened. I think it is safe to say we all felt like that on diagnosis and the tests leading up to it. You will get so much support in this forum - it is great at any time but really helps in the beginning if you feel lost and alone like I did! The people on this forum understand exactly how you feel, what you fear and how overwhelming it all is.

Please don't panic but be quite strict with your medics - persist and get the answers you want from them so you feel in control of your illness - it belongs to you after all! You will see from some posts that people have had these diseases and survived many years. I have come to the conclusion nothing is worth worrying about until it happens and it might not ever happen!

Take care, thinking of you Aime x

[Shelly1960]

hi Helen if you in Nottingham happy to meet up when you get diagnosis it is a very confusing time and different give you different support and information I know very little even though diagnosed three years ago I wish you all the best and I get very tired to so presume it is the condition my email is [e-mail] wishing you all the best michelle