Hi, I was diagnosed with JAC2 Essential thrombocythemia (ET) in September and have been taking aspirin daily.
I haven’t really had too many side effects however I am currently suffering from extreme fatigue and my whole body is aching. I have an active five year old who likes mammy to do everything with him.
Has anyone else suffered this and do you have any advice to power through? My housework is suffering and with Christmas fast approaching I need so energy desperately xx
Oh @Lindgriff welcome to our forum and I feel for you having a very active 5 yr old boy.
Firstly perhaps chat with your medical team and tell them how your fatigue really is for you and how you are struggling.
My thoughts are:
Try not to stress about Christmas, it is just another day with a roast dinner.
Keep it simple and pace yourself.
Perhaps sometimes you might need a nap or sometimes just get a bit of fresh air and appropriate exercise.
Ask for help and be willing to accept it
Just do essential housework, if you are putting decorations up they cover the dust.
Try not to get caught up in the hype of Christmas.
Try not to get anxious, I find that exhausts me.
How important is it, the main thing is you and your little boy.
I attach the Blood Cancer UK details on fatigue
Blood cancer and fatigue | Blood Cancer UK
Hopefully there will be a few fun chill out films you can watch with your son curled up under a blanket, if that is your thing.
Be ever so kind to yourself and really look after yourselves.
We will be about all over the festive period for everyone to say how it really is for us
Hi @Lindgriff
Thanks for your post and a big welcome to our forum. I’m sure there are many people here who will understand how challenging fatigue can be and I hope you find the support you need. Please do search for fatigue in the search box if you would find this helpful as it is a subject that understandably comes up quite a bit.
@Erica has given you such good advice. I share her sentiment in feeling for you while going through this with an active 5 year old. Be really kind to yourself and know that you are doing great even if it is only simple things you can manage with him right now.
We have some more information on Essential thrombocythemia (ET) on our website, and this page in particular on looking after yourself might be helpful to read through: Looking after yourself with ET (essential thrombocythaemia) | Blood Cancer UK This information stood out to me for you:
It’s important to stay as active as you can, even if the Essential thrombocythemia (ET) or your treatment is making you feel tired. Exercise can help to boost your mood as well your overall fitness – and you don’t have to do anything high impact. Gentle exercise such as yoga can be effective.
Choose something that you like doing or can incorporate easily into your daily routine, like gardening, walking or following an exercise video at home.
I wonder whether little walks with your son may help and/or trying some simple yoga together. I’m sure you will find what is right for you, but take it day by day for now and try not to be hard on yourself if some days are harder than others.
Sending you best wishes,
Ali
Hello @Lindgriff - welcome to this forum and I am glad you have found some assistance and support with us here. I am an Essential thrombocythemia (ET) patient too diagnosed over 18 years ago when I was in mid 40s - but had had bone marrow and blood problems since I was a teenager so these days like you I would have been diagnosed much earlier at a younger age!
I well appreciate what you say about fatigue and body aches it’s very much part of MPNs and don’t worry you will find and learn ways to deal with it in your particular situation and find things more manageable. It’s a lovely suggestion from Ali above for gentle walks with your little one - I know I was advised when first diagnosed how much gentle exercise helps the fatigue despite it being the last thing you feel like - gentle is the key but the out and about and movement does good for our blood and it does benefit - I was thinking then once home a big of snuggly time for you two with a video would be beneficial to give you some rest after. Fatigue is very much part of MPNs - do let your consultant know at your next appointment how you are feeling as they will keep assessing how you are doing for you specifically - also chat to the clinical nurse specialist if you have been assigned one as they are often good for day to day living with the conditions. Do look too at Myeloproliferative neoplasms (MPN) Voice the charity for MPNs they have a lot of information especially for patients diagnosed when young and are parents that you would find helpful
Couple of practical bits I have found over the years is the gentle exercise as mentioned, keeping well hydrated water is the friend of MPNs not over the top just having a water bottle with you out and about or when at home for little sips it’s amazing what a difference it makes. Also i noted your comment about “plowing on through” - I guess one of the things to adjust to especially when you are used to being able to go go go is an adjustment to little bits as you can with rest bits in between - not easy when you are mum with a small one I know - I found years back I had to find my perimeter of what I could do in a day or part of a day go with that leaving the bits that couldn’t be done for another time - I also found that when there were things that had to be done or a visit that was way beyond the perimeters I needed to adjust a bit in the day or so before and know that after I would be very tired and not plan anything for then - it’s a real learning curve to get there but really works once you find your perimeter (and it’s different for each patient) and work with it takes away the frustration of “but I used to be able to do” and values the bit that can be achieved. Hope that makes sense!
Keep us posted how you get on and don’t worry you will find the ways in due course of how to deal with our condition