Is that time of year again, Christmas. Used to love it and now I dread it. We have a large family and of course we want to see them. We keep having to refuse invitations because I’m so very tired. We’re both in our 80’s my husband and I. But trying to explain to the children that I am always exhausted is impossible. I’ve got E T and I’m on hydroxy also have arthritis all over. They say that I should make an effort and that they worry that if I don’t do much I’ll want to do less and less.. I can’t imagine that I’m going to get better and younger!!! I love them but why can’t they understand! Going away for a night or two fills me with dread. Packing sorting out the dog, clothes ,medications etc. please visit us instead!! Sorry about my rant! Wishing you all a Happy Christmas
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so sorry the fatigue is real and there are times I cannot cope with company you must tell them you are both not up to it and don’t feel bad. I suffer like you be strong it’s your body and if you need test then do be it merry Christmas x
Very sorry to read about this and the lack of understanding of your condition. It will no doubt be due to them not understanding what the disease is - most folk associate cancer with solid tumours. It could help - like a previous post has suggested for you to direct them all to the various blood cancer websites - even run copies off for them. Then, could I suggest a big family gathering to explain how you feel and ask them how they can adapt to you and help you, rather than the other way around. Good luck and very best wishes for the future.
It might be worth you pointing them in the direction of the Blood Cancer UK site where if you scroll down to Latest News and Stories there is a very useful article on ' How to make the most of the holiday season'. There are tips for friends and family and also a good explanation on how many of us are feeling. Most friends and family mean well but can't sometimes put themselves in our shoes and Christmas I've found brings many challenges - avoiding infections in particular.
I'm 43 and feel your pain. I dread gatherings now whereas in the past I used to enjoy them. People don't seem to understand this condition as it's not well known. I also have to put some boundaries in place. If they love you then they can make the effort to come to you.
You’re not alone - feel same. I’ve just learned to start saying Sorry can’t do, just not up to it. They will either take their time to understand, or not…. Good luck and Happy Xmas!
I’m the same, we’re in our 70’s and I too have severe arthritis. We didn’t go to a family gathering last year because some of them had covid, they couldn’t understand why it bothered me!
We were due to have family stay with us this year but now we’ve booked a large cottage and the younger ones are doing all the work. I’ll be reading to our granddaughter and stroking dogs - we have 5 between us!
It does help that I’m not exactly famed for my cooking skills so they know it’s better someone else does it!
I’ve made a list of what I’m taking and have started getting it together as much as possible beforehand. We’re having a supermarket delivery to the cottage which one of daughter in laws has organised.
I’m relieved they’re not coming here and also it’s not too far to the cottage. But glad I’ll be seeing the ones who live at the other end of the country in person instead of via technology.
Bless you , Christmas is a difficult time for so many, let alone living with ET and the this associated with it . You need to do what is best for you and let your family how you are feeling . I’m sure that they will understand and die allowances and come and visit you.. wishing you all the best
I do so sympathise with you. Christmas can be a very stressful time even in good health so having E.T. and arthritis just adds to the burden.
I don't think anyone who doesn't have this disease can understand the sheer exhaustion and myriad of other symptoms that come with it. I feel your family should be more understanding and if not so be it. This perhaps sounds harsh but it's Christmas for you and your husband too!
My advice, for what it's worth, would be to have a nice time at home and don't add the stress of going away to what should be a happy time. Sometimes we just have to be totally truthful and in the end I'm sure your children will understand. Wishing you all the very best.
It’s hard to look forward to doing something when you know you’re going to be tired due to ET.
Christmas, unlike the happy family scenes on the TV ads, can be exhausting without having ET so I understand where you’re coming from.
It’s easy at Christmas for family members to just expect the whole family to be together & that ideology likely comes from a good place.
I don’t have any easy fixes other than to suggest, as others have, that you explain your feelings & see if some common ground can be found & seek a solution that suits everyone.
At least you can always come here for a rant & in a small way I hope it helps to share the issue with others that understand x
Thank you for your reply. You are absolutely right..it helps a great deal to just come on this site and tell how it is! And also see that I’m not alone in this situation. Have a lovely Christmas
Both my parents are in their 90s & in a care home so, as they’re not fit enough to come out for the day, I’m going to see them & have lunch there. I actually quite enjoy seeing all the residents & am inspired by their resilience & the happiness they show, in spite of their age associated issues. I find it very uplifting ❤️ x
I was a carer for the elderly for many years right up to age of 66..I understand your feelings about Christmas time in care home. Have a lovely peaceful Christmas
I understand how you feel. My son and his fiancé are coming this week for 4 days. Usually I’m so excited and I start baking and thinking about meal planning , and activities that they would like. But, I got Covid last month and I still feel achy and tired and I don’t feel like doing anything. But as usual, I’m going to force myself to do what I can so they have a good time. I’m just not going to do as much and they will have to understand.
I am approaching 71 and have EARLY MYLO FIBROSIS, and ET also ( platelets around 1 million) even taking hydroxa) and know what you are talking about on the fatigue. Your family should understand that people in their 80's naturally slow down a little and should understand that. In the most loving way tell them to come to you. That's all I can say about that. Hope you are going to get better and soon. Blessings from LA ( LOWER ALABAMA).
Not much to add, thank you so much for your “rant,” it was *exactly* what I needed to hear this morning
I was just speaking with my hematologist yesterday about how discouraging and frustrating the fatigue that goes along with PV with Hydroxy can be.
I’ve always been able to “push through” and get things done. I used to love to sew for hours on end, three-hour sessions are about all I can manage before my concentration starts to go and I need to stop. I now clean the bathroom over two days - first the right side of the room, then the left.
It’s so good to know we’re not alone in this, wishing you a Happy Christmas as well.
goodness you’d think I wrote that note! I’m 81.. have ET..on hydroxy.. a little pain all over and soooo tired!! I’ve gotten to the point that it’s too bad if no one understands. I tell them I’m tired and they can either accept it or not… I’m staying home. I’m tired of trying to justify my decision. Wish I had the magic words for you 😔. Do what’s best for you. In the end they will learn to accept it. It’s family. Holliday are beginning to be a real hassle and I kinda wish to be left alone as getting the house cleaned for visitors…. Ugggg. HARD! I wish for October to go directly to January 2nd.!!! Hang in there! And merry Christmas to you as well in the peace of your own home 🦋
Head and brick wall and all that. Because the relatives can't see any signs of cancer they dont realise that there are side effects. Having had ET for 12 years now and taking hydroxy I sympathise with you and your symptoms. My advice to you is do what you want to do and leave the relatives to join you or not. That way there is no pressure on anyone to do the right thing.Have a relaxing Christmas and New Year.
I can understand their fears, activity is a strong factor in living a long and healthier life.
And having a 'hidden' disease like a blood cancer makes it difficult for them to understand how hard it can be, especially when people have such a wide variety of responses, some having more issues with fatigue and pain than others.
Since I can be remarkably impolite at times I'd simply ask them "what part of I have a blood cancer and I am bloody tired do you not understand? Show some damn consideration to your mother." Those exact words may not be a good idea with your kids, but something along those lines might help, or have your husband say them. Is he not supporting you or is he siding with the kids?
Could your doctor write them a letter explaining that you are not malingering and the reality of your experience with ET?
I sympathize. Fatigue hits me, and can make me bitter and crabby. I have some ideas, though. We can ask for alternate celebrations spread out over the season or the year, in person or games on zoom. We can ask for mini celebrations, like joining us for tea and a chat or a calm walk. We can ask for and give outings to a movie or coffee instead of gift buying. We tired ones also need to celebrate but without stress; perhaps relatives and friends could help us brainstorm on that. Good cheer to all and to each her or his or their own!
I came across this cartoon many years ago. I shared it with family saying that I don’t feel all these things all the time but hoped it might help them understand better what is happening. Sometimes a picture is worth a million words. Hope you have a wonderful holiday this year hanging out and ordering the young things around. You earned it😘💪
cartoon of what I look like as opposed to how I might feel.
I absolutely relate to how you feel. I am 83 and have MF. The tiredness and fatigue overwhelm me at times.
I live in Australia and am two hours away from Sydney where my family live and work. On high days and holidays I am invited to stay at one of their houses so that I can join in with the celebrations. As I have 3 grown up children and 7 grandchildren, I am expected to move around the family. If only they realised what an effort it is to change venue and ensure I take everything I need.
I am already stressed about Christmas and have made the decision to stay quietly at home, which has not gone down well as you can imagine.
As those of us with MPN’s may look well, people fail to understand how fatigued and anxious we feel inside. I totally understand your sentiments.
Thank you so much for your reply. I cried so much yesterday.. I love them and so wish it could be like the old days.. Me baking and cooking for days.. But you know, I’m remembering when I was younger and my mum would say “I’m tired” and my eyes would roll!! I did not understand. I suppose it sort of the same thing. I’ll just have to be firm and not get upset. I wish you a wonderful peaceful Christmas x
I on the other hand have a small family. My daughter in law thinks it’s impossible to squeeze my younger son and I around her Christmas table so I’m having the five of them here I’m like you worrying about it. Yet she can entertain her 7 guests from her family on Boxing Day!
After losing my husband this March I thought I’d have a little compassion thrown my way.
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Fatigue and Craving!
Stress and platelets
Guy’s telephone appt on Tuesday. Advice and questions to ask please. 
