Since starting to research this illness I've had an emotional rollercoaster. I read something and feel reassured and then read something else and become anxious again. I'm absolutely terrified of having a clot and of what I may be left with following it. I'm trying to be more active and I feel better for it but every pain I get I think it could be a clot. I have ET jak2+ I read being jak2 +makes you more susceptible to clotting than the other mutations.-Plus I have heart disease and clotting in the family on both sides so that makes me feel even more vulnerable. I know I've just got to live for today and move forward with my life but I can't seem to shake off the worry. I'm actually sick of thinking about this condition I feel like my life is in two parts before and after diagnosis. I'm really hoping a point of acceptance will descend on me so I can watch a program or have a conversation without my mind wondering back to having this condition. Sorry about the negativity I'm just having a bad day today.
Emotional Rollercoaster : Since starting to... - MPN Voice
Emotional Rollercoaster
Hi camelian,i see your have only been diagnosed recently,so your feelings are perfectly normal. We were all the same in the begining but i can tell you it will get easier with time and you will feel less anxious in time. I have a similar history to yours,i am jak2, my dad had 2 major strokes,mum had history of small strokes and i've had 2 strokes but it is not a given people with et will have strokes or clots. Their are many that go on to be symptom free and have no problems. By all means research it but don't let it consume your life,that will make your anxiety worse. This thing dosen't kill you,it is the complications associated with it. But do you want to live the rest of your life worrying about it and making yourself ill. I am in the minorty not the majority of et2 jak mpn'ers who have had problems but my whole 11 years of being diagnosed haven't been like that . I've gone most of the time as if i've never had it. I have had other health problems but they are not connected to the et. Please stop worrying and start enjoying life again,consider your diagnosis not the end of your life but a new chapter in it. Sending you good wishes and hugs.tina.x🤗
Thank you Tina your absolutely right and I like I said to Bloodzero I'm waiting in earnest for that mental strength to come and I appreciate the emotional ups and downs are what will help me achieve this. I'm on my fittest plan and healthy eating regime so I'm doing all that's in my power now I need to enjoy life and stop worrying about what I can't change. X thankyou
Hello Camelian,
I felt the same at first. I also have heart disease in the family and it was very hard to shake the anxiety at first. My platelets have been high for years. Av about 1300-1400 and every time I got a slight headache thought I was going to have a stroke.
Eventially I mentaly strengthen my trust in the future and that has eased my anxiety greatly. I have a very specific thing Im hoping to see. I also watched a video on Youtube dealing with anxiety that helped me greatly too.
All the best.
Thanks Bloodzero I'm glad you managed to resolve your fears that's what I'm hoping will eventually happen with me- that my fears are saturated and eventually I'll be in a better place and able to live with uncertainty. I'm an overthinking worrier by nature and if I have a concern I spend a lot of time resolving the issue then move on but there is no resolve with this it's about learning to live with it which I'm hopeful will come it's just living with the emotional rollercoaster on the journey. Thank you for your kind words I have specific things I'm looking forward too as well so like you I'll find a way to strengthen my mind.
Hi Camelian, as Tico has said, we all understand how you are feeling as we have all been there, it is such a huge change to your life, it will take a while, but please try not to worry too much as anxiety doesn't help, and I know it's easy for me to say don't worry. It might help you to discuss this with your GP to try and find ways of helping you with the anxiety, there are lots of ways they can help with different therapies and coping strategies, a lot of these are available as apps and are online. And just keep talking to people on this forum, we are all here to help and support each other, through the good and bad days. Maz
Hi Camelian. I am eternally grateful that I was diagnosed before the days of Doctor Google! It is always tempting to research our ailments on the internet nowadays but as I think you are finding there is a lot of conflicting information out there. I would certainly recommend MPMvoice as a safe place to research and this forum is very supportive with no back biting as you sometimes find on Facebook pages. If I were you I would strictly limit your research on Google as you are clearly scaring yourself. I heard a definition of fear once as False Expectation Appearing Real and there is much truth in that. You have already received some very sound advice on here and I hope you find a way to reduce your anxiety and get on with enjoying life again. Best wishes, Jan
Thanks jan yes I now avoid Google I went on the patient power website and saw some reasuring informative videos and I have had the same experience on this site. I guess it's about focusing on the positive posts which I'm slowly doing. I guess I'm going through an ajustment process which involves ups and downs but in the end gives you a stronger mindset.
Yes, patient power is a good one too. We all go through the ups and downs. You are quite normal there. I’m sure once the initial shock dies down you will find it easier and easier to focus on the positives
Eventually, you may look at this as a chronic condition that can and must be managed. My father had a dvt and then a cerebral hemorrage at 48. My mother started small strokes at age 58. I am 69. I had a TIA 10 years ago and went on aspirin. I do not enjoy frequent CBCs and take no delight in my Pegasys injections but there are many reasons to be grateful.
Your absolutely right as I've already said there has to be a progression process to acceptance and I realise I'm working my way there and slowly getting over the initial shock of this ET jak2+ diagnosis. I have an awful lot to be grateful for and challenges like this make you appriciate the good things you have aka my kids, grandkids family and friends.
Hi Camelian, so sympathise with you....felt exactly like you do first year of diagnosis of ET jak positive....but 5 years on, most of the time just completely forget I even have it. Have had TIA's, but really I decided that worrying was just pulling me down....and looked around at others with every conceivable disease, arthritis, cancers, etc. etc. and decided it is an attitude of mind. If we decide to dwell on the negative and fearful all the time, it just pulls us down. But if we work out a healthy diet, drink lots of water, take sensible exercise and do things that are enjoyable, which could be gardening, sewing, walking, reading, listening to music, something that appeals to you - we get our priorities right. Worry just creates more worry. You have landed in an excellent forum of very kind and concerned people and will get wonderful support. I do wish you absolutely the best and am pretty sure you will be like us 'old stagers' before long, and just carrying on with your life and not driving yourself over the top with worry any longer. Kindest possible regards, Tinkerbell
Wow Tinkerbell - you have THE greatest outlook on this. I’m definitely trying to maintain the same view. Thanks for the inspiration.
Brilliant, if inspired you....also cheered today, as just beautiful blue skies and sunshine, hope where you are too....good to be alive, even if we have to put up with - what I always refer to it as 'my weird blood'...! Best wishes, Tinkerbell
Thanks Tinkerbell your advice had been noted and I will be taking a leaf out your book. To be honest I have a very busy life I work full time and have 9 grandkids that keep me going.
Bit by bit I'm getting use to having this condition but there's that odd days when them negative thoughts get a grip of me. Thanks for your kind words it's nice to have this site where there's people who understand.
You sound a pretty remarkable person and so hope those negative days grow less and less....and lots in your life to bring you joy and cancel out those bad days. Being a grandparent is extra special and sure this is a special boost always....really wishing you well. Tinkerbell.
Thanks Tinkerbell
Wow camelian, a full time job and 9 wonderful grandchildren,you are so blessed with so many. You know when you ever feel anxious and low,just think of them. Our grandchildren bring so much joy and happiness to a lot of people on here,i don't about you but i'm already planning on the great- grandchildren coming along and my 2 grandkids are only 3 years and 6 months old,so i've got a bit of a wait but i've got plans on being around. You have had some great advice on here from a lot of people,some who have been here a while, the likes of beetle and Tinkerbell have given you sound advice. You know when you have any worries or just low in yourself,just post,theirs always someone who will listen,it might even be something that you think might benefit other people and want to share on here but can i ask you,if you win the euromillions jackpot can i share? Lol, only joking of course. Hope your feeling better than earlier. Sending hugs and best wishes.x🤗
Thanks Tico yes like you I want to be around for my great grankids. My grankids range from newborn to 20 so there's a good chance it won't be too long before one comes along.
I feel much more positive today the people on here are lovely and understanding and give good advice so it's a good place to come when your having one of them days. Sending hugs and best wishes back to you.
An apple a day keeps the doctor away is old hat, it's a laugh a day what keeps them at bay! So glad your feeling more upbeat, great news,are you in uk? Oh, by the way you didn't reply to the lotta question,lol, hugs to you.tina🤗
Hi
.Sorry you are worrying which I can understand. I too have ET Jak2+ which Id rather not have. I am thankful that I have something that on the whole can be managed....theres plenty of illnesses that cant. Worrying about the future is beyond our control so long as we do all the right things which are well documented on this forum. You can and most people do live a life with ET so enjoy each day as it comes. Some will be good and some not so good but it could always be worse. Good luck!
Planting
I was diagnosed with PV Sept 2017 and still get those days but less frequent. I'm now on hydrea and warfarin and due to fly from Ireland to Australia later this year and was worried about DVT and clots due to illness and doctor said I'd actually be safer than most of the other passengers as I'm on blood thinner, will wear travel socks, will drink loads of water and no alcohol and will move around...so turned it into a weird positive!
Every cloud aye, at least knowing about the condition makes you start to look at your lifestyle. I've been trying to loose weight for years unsuccessfully I might add but as soon as I found out I had this I lost a stone within s couple of months and I will keep chipping away at it. Plus I'm probably a lot more active than I was so your right a weird sort of positive..
Well done on losing weight. I have 4 stone to lose but determined to do it eventually even if its just a pound a week
Hi Camelian, as all the above said, we know what you are going through and this initial phase will pass and you will be stronger. I especially sympathize with you being terrorized by every single little sensitivity in your leg. I had ET for 7 years before I was diagnosed. Sept 12, 2017, I was diagnosed with stage 2 deep vein insufficiency. I was traumatized that I was in danger of getting thrombosis and would have to wear stocking for the rest of my life. On September 27th I had a stroke and by October 12, the ET diagnosis. ET and vein insufficiency! My head was spinning. It was unreal. I did research a lot and took control of my illness. My research was for me very important and the more I understood, the more I could do to keep me as healthy as possible. Step by step. I now feel when my blood is too thick and too thin and can adjust. I’m doing well. Get to know your body and make sure you have a doctor who listens to you. Your patient-doctor relationship is very important for your wellbeing and peace of mind. It should be like a partnership. We are also here for you! All my best wishes. X
Hi Snag wow it sounds like you had a really awful time. I don't know how long I've had ET my gp said my platelets have been up and down since 2015 and I guess it could have been longer. I've had a couple of apts with the heamotologist but now I see the nurse in clinic which I think is a little strange as most people on here seem to see a heamotologist?
Good morning family.greetings from Fleetwood Lancashire, England.
The time is here to.kick butt on this journey of not your making.
It does not define you, it is just a name.Being managed is strange at first, and if you are like me, trust and control are adjustments that need finer tunning don't you think????
We have all been where you,are now.
There is no shame in what you,are feeling but you are not alone in this universe.
So go outside and smell the flowers, walk the dog o r just shout I am alive, I am going to live again.
Write down how you are feeling then keep it in a sealed envelope.
In six months you will feel better as you realise that others too are coping so you can too.
It's just mind games.
We are here to listen, support you and make you laugh.
Take care from me to you big hugs
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