I've just joined this site, have been diagnosed with ET and PV for about 4 years now, am relatively young, was diagnosed at 36 and had a stroke at 26! At the time I was moving and was told there was nothing wrong with me other than the stress of moving! Despite Not being able to express words, stuttering and hesitating all the time! 3 (2 late) miscarriages It took another 10 years to find the problem! Although going onto aspirin albeit unbeknown about my disorder at the time) allowed me to have two successful pregnancies!! However, my 2 little girls are very challenging, (1 awaiting diagnosis of ADHD and their other Asperger's syndrome) I'm on interferon and find that I am sooo tired all the time! People don't understand the level of tiredness I feel, I sleep for days in a comatosed state and never know when it will strike!! (Also happened today) Because I look ok, people think I'm fine, or even that I'm making up my symptoms!! I have days when I look and feel ok but others when I cannot get out of bed!! Is anyone else suffering from the tiredness/ exhaustion? And what do you do about it?
Hi all! : I've just joined this site, have been... - MPN Voice
Hi all!
Welcome Essexdoll. You have certainly had a lot of misfortune over the years, I am hardly surprised you are so very tired, you are dealing with a lot. Tiredness is I think is probably the most talked about topic on this forum, so most people will understand exactly how you feel.
As you say because we do not show outward signs of our health issues, our friends ,family and colleagues assume we are fine. Despite us probably wanting to just sink into a chair and sleep. Which some of us are able to do , but with children to care for that can't be easy for you . I'm afraid I have no answer for you. All I can say is to hope that things will get a little easier for you. We are here to chat with our MPN friends and have a rant when you need to , we seek , and give, advice when we can ,but most of all we can share with others our thoughts and good days.
With best wishes to you Sandy X
Thank you my lovely x glad to be reading that all are experiencing the tiredness like me, as you do feel alone with it! It's nice to know I'm not alone!! ❤️
I winced when I read your list of problems. Life can be so unfair for one so young.
I was diagnosed with ET (now MF) by chance at 66 after years of complaining to my GP about fatigue. Before the disease took hold I had led a very full and active life. Now, most days, I just want to sit and let the world go by.
We have two granddaughters, aged five and eight, coming for the day tomorrow and I know that by time they're tucked up in bed I will be totally exhausted. Goodness knows how you look after two lively youngsters 24/7.
We can only live in hope that technology will get to the stage when it can help someone as young as you to lead a more normal life.
You are not alone when you participate in a forum like this. Good luck.
Hi Essexdoll, so sorry you are so tired as well as everything else on top. Exhaustion is my worst side effect alongside my hands and feet. People don't understand our condition at all as we nearly always look so well. I too have my crash days when I can't get out of bed. These can last a day or many days.
I hope family help you out especially with the children. Maybe let your family read these comments as that might help them understand our condition.
Take care
Marigold
Hello Essexdoll,I echo all the replies and add my warm welcome to our exclusive club.I really feel for you having to cope with so much and being so young.Can only say keep strong as possible and keep in touch with this site,we are here for you always.Warmest thoughts ,Sally
Hi Essexdoll
I am really feeling for you, you have been through so much. The fatigue is so awful for us all and no one but us understands. I called in sick yesterday and said I felt like I'd been hit by a bus as I didn't have the strength to lift my arm to turn on the shower, went back to bed and slept till 3 and was back in bed by 9.30pm. I'm in work today but still feel like a zombie. I always feel so embarrassed to call in sick. Are you living in Essex?
Mel x
Yes! I live in Halstead! You? Xxx
I'm in Hockley x
Hello Essexdoll
You are not alone - the tiredness is awful and not the sort you can sleep away, wake up and feel refreshed. It is an added problem that we all look very well most of the time and so hard for people to recognise how ill we feel. I am so sorry for you as having two small children to care for at the same time must be difficult to say the least, lovely as is it to have them.
Have you any of the leaflets that there are available? Maz would be able to help you with them if not and then you could at least offer them to people to read. It might help with the understanding.
Thinking of you and wishing you all the very best.
Linda
Hello Essexdoll, welcome to our forum. Gosh, you have been through it, bless you. Fatigue with MPNs is one of the most debilitating and awful side effects of these awful conditions, and suffered by very many people, I am afraid there isn't very much you can do to relieve it, just take it easy and listen to your body, however, having said that, studies that have been undertaken by leading experts have concluded that even when you feel you can't get out of bed or off the sofa, is to do some exercise, not necessarily go to the gym, but just go for a walk and move around, but with 2 small children I imagine that you move around quite a lot already. If you need any information booklets please email me at maz.cd@mpnvoice.org.uk. Best wishes, Maz
Welcome and how awful what you had to endure. Good you now know. I sympathise with the fatigue and people saying you look well. I feel like a broken record now saying 'I don't feel it'. Great support here so write anytime you need help or just a virtual hug. Xx
Hi Essexdoll
Really feel for you, its unbearable at times managing a family and fatigue, I have been there.... I was diagnosed with ET at 52, but suspect I have had it for years undiagnosed and fobbed off. I also lost a baby girl late in pregnancy with pre-eclampsia, which looking back, I suspect was ET linked. I also had an ectopic pregnancy. I was advised to take aspirin 75mg daily when I fell pregnant again and went on to have a successful pregnancy. However, an added bonus which I didn't relate to much at the time, was the burning toes that I experienced regularly, just disappeared............. I continued with the aspirin after that and discovered when I forgot to take it for a few days the sore toes would return with a vengeance. Looking back the fatigue was terrible which I blamed on a hectic life, I used to grab an hour of sleep here and there whenever possible. I wish I could offer a solution for you, but I can't, just try and put yourself first and delegate when you can. Just know you are not alone. Best wishes.
The fatigue is the hardest thing to manage I found, but as Maz says it does help to do some gentle exercise. The problem with most of us is busy jobs and other family responsibilities and you have a lot of them. In the end I had to give up my work, in order to be able to keep going, as I was running into the ground and becoming sicker and sicker as my jobs had long hours and unplanned events. I was spending all of my limited hours outside work flaked out on the sofa or in bed! My advice would be to take some time out for yourself each day and do something that makes you feel good, whether it is something as simple as applying a face mask and sitting down for 10 minutes, or even better taking a short walk( now it is summer it is easier) and building up your walking. Before ET I used to run and do lots of activities and was a gym bunny, but after I could just about get through the working day using crutches such as tea and coffee and snacks for energy, none of which really worked, and then was to exhausted to exercise much. But it is the best thing to try. I find walking is the best as it is one of the easiest things to fit round your other activities and you can do as little or as much as you feel like. I like using the app on my phone I can see progress over time- it is surprising how your stamina and well being improves with even the most gentle of exercise and gives you time to appreciate the nice things outside around us.
Thank you! I was a gym bunny too, until I just couldn't do it anymore and put on a lot of weight, which depressed me even more! I've been doing a low carb high fat diet and have lost 1 and a half stone in six weeks! Although the weight is now coming off it hasn't helped with energy levels, but I guess you cant have everything! 😃
Hey
Welcome, sorry to hear of the problems its caused you.
You arent alone in your fatigue, as you say people think we look ok which makes it all the more challenging.
Its difficult to manage. I am not sure there is a magic answer, excercise and keeping hydrated helps for me, although fatigue is both physical and mental. I find the excercise helps me physically not so much mentally right now.
I could go out on a 10 mile bike ride right now but ask me to make a difficult decision and i would struggle to do it.
Paul
Hi there, my name is Carole and my heart goes out to you, in fact my eyes are tearing Up! Why? Because when I was young, I was in the same situation as you health wise, but didn't have problems with my family. The big difference though is that I am now 57 and only been diagnosed with ET for about a year and even then, my then Haematologist said my symptoms were not related! 😲 Needless to say my nerves have been totally shredded and stamped on. So my advice to you is look after yourself , stay on this website it's saved my sanity. Hold your diognosis up! And say defiantly, I have a legitimate reason for the way I am. I'm glad I look well, but today is not a good day! Sorry if I sound like a bossy mum, but I don't want anyone to suffer a lifetime of misery alone in their head. Please somehow try to find an hour to yourself most days. Take good care of yourself your girls need you and you need you ☺ a big virtual hug X
Thank you darling! I have in recent years taken up amateur dramatics and I love it! I had forgotten how much I loved it from school and when my eldest daughter who dances was asked to join, I got hooked! Something I absolutely love!! And get to use my singing as I love singing!
Hey there, I haven't got any advice or words of wisdom I'm afraid but I just wanted to say from one mum of 2 young girls to another you're doing amazingly by the sounds.. I have just been diagnosed at 39 with PV & am finding looking after my 2 a real challenge some days but it sounds nothing to what you are having to cope with and have indeed been through.. well done girl! I really hope the fatigue improves for you.. I have yet to see what drug I am to be given but I think they are recommending the hydroxy rather than interferon but will wait & see.. Well my heart goes out to you & make sure you accept any offers of help you can with your girls. Take care xx
Thank you my darling! I do struggle and it does sound all doom and gloom, but I am grateful for my lovely rainbow babies! I do also have a 15 yr old that I had before the stroke and she really helps me a lot, my husband also helps a lot and looks after the kids when I am unable and also so I can go out and do the am dram stuff! He puts up with a lot! Bless him! Been married 18 yrs this year!! Xxx
Hi Essex doll,
There are no words I can say that has not already been said in previous posts.
Sending E-hugs
Wishing you all the very best 💖
Hello. I've just found your post. I, too, live in Essex - just down the road from you in Aldham!
I have E.T. jak neg Calr positive.
I was diagnosed 12 years ago when I was 54 so I am a lot older than you. It must very hard for you to deal with being so young and with young children as well.
This is great site to be on. Hope you a get a lot support and comfort from it.
Hi Essexdoll. Our history is very similar. Although my stroke and diagnosis with PV happened in my early 50's. I also had three miscarriages in my early 30's... at the time my husband was in the Army so there was limited consistency with the Consultants I saw. After the 3rd miscarriage the Dr I saw was actually starting to look into the fact that it could have something to do with my blood. I'm Rhesus negative so I thought she was referring to that though. We moved and there were no further pregnancies so I didn't follow it up.
I had a stroke in 2012, when I was 50... which at the time was originally misdiagnosed as MS. Further neurological appointments later the Dr's started questioning their original diagnosis. I was then tested for Lupus and other neurological illnesses until at the end of 2014 when I experienced a massive blood clot in my hand (thankfully it was my hand that time) Due to the fact that it just appeared for no apparent reason... I went to my GP. She took a blood test, and queried my HCT level with my now haematologist and I was diagnosed as having PV. My Haem looked back on my past blood test results and I also saw a Stroke Dr and between them it was confirmed that I had a Stroke in 2012, and my Haem seems to think I've had PV since at least 2009. What a relief it was to be diagnosed at long last! I do often wonder why PV wasn't picked up before the 2nd blood clot, but I suppose they were always 'looking' for something else.
I often feel totally knackered. Fatigue is horrendous, but as others have said gentle exercise does help. I walk and try to take 8000 steps a day. As has also been said hydration is also a key factor.
Take care.
Kari.x
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