The only thing I ever really complain about is tiredness and even then it's 2 or 3 times a week at most, as I try to keep it to myself. I have been feeling really low for the last few weeks, owing to money problems and bad blood results, leading to a bone marrow biopsy, which my heam thinks will show significant change and the beginning of meds. I don't get results till the 18th November as she has been away for a month, but even the wait isn't bothering me. When I complain of tiredness due to working an extra 15 hours a week at present, or even on a day off, my partner says "here comes the cancer card!" It makes me feel so pathetic and broken, yet angry and disgusted at him at the same time. I have always been such a strong positive person and can find a silver lining in almost every bad situation, but I feel so miserable and deflated by him.
What do I do, I can't afford to live alone or am I just being a wimp?
Sorry to moan. Mel x
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harleydavidson
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Oh Mel, what a situation to be in. I know what the tiredness is like. My husband does not like to talk about it although he comes with me for my appointments he doesn't really take things in and says thing like "oh well you could get a bone marrow transplant or something" , he is very good but when it comes to my MPN he blanks it out . Its vey frustrating to not be able to discuss things with your nearest and dearest. I too was the strongest person ever, but I see the world in a different light now and I cant cope a lot of the time. That's the beauty of this site, we can moan and find solace in the fact that we are all in the same situation and that life has changed for us all, so therefore we can sympathise when one of us is down. I hope your situation improves and thoughts are with you. x
We all need support, and its not being a wimp, i dont blame you for feeling angry.
I know its easy to say but you should never feel pathetic or anything for feeling low...we are allowed to, its our loved ones we need to lift us when we are feeling low.
Hi Mel, no you are not being a wimp at all, it's completely understandable that you are feeling like this, and we are all hear to listen, and try and help if we can. All of us on this forum will know how you are feeling when you are tired, though it can some days be worse than 'tired'. I am sorry also to hear that you feel unsupported, I don't know if you have a buddy, but if you don't then possibly having a buddy might help you as you will be matched up with someone who has the same MPN as you and takes the same medication and can therefore help and support you from the perspective of someone who really understands what it is like to live with a MPN, if you would like me to send you the buddy details then email me at maz.cd@mpnvoice.org.uk. Best wishes, Maz x
Thank you Maz and yes I do have a buddy from the forum, I didn't like to burden her this morning, so you all got it instead. Sorry about that folks! Still crying at my desk and dread going home today, but feel a little stronger due to my extended family! Thank you all x
Hi Paul. Car wouldn't start when I left work last night, had to get someone to jump start it, then thought it couldn't get any worse until my daughters chihuahua escaped out of the cat flap during next doors fireworks, whilst I was dog sitting. We searched for him until 1am and started again at 6.30 this morning. Walked about 10 miles, printed and put up posters, posted flyers through letter boxes and phoned every vet and dog warden in a 30 mile radius, then at 2.30 this afternoon he came home, none the worse for his adventure. Thank goodness!!! So now I'm nearly asleep at my desk and aching from waist to toe. Moaning again! Tomorrow is sure to be better
My husbands attitude to illness is ignore it and it will go away. My mother in law had leukaemia and he wouldn't admit she was ill until her last day! He doesn't come with me to the hospital just asks if the results are good. He doesn't think taking tablets does anything and says I shouldn't take my HU as it makes me "tired"!! (Doesn't matter about it reducing my platelet levels) Neither does he realise that this attitude doesn't help me in anyway! It isn't that he doesn't care just that he won't acknowledge illness affects peoples lives. So you are not alone!! You are not a wimp - YOU are the strong one!! XX
Thanks Lizziep. My partner does come for some of my hospital visits and can be very caring for a short while. Maybe I expect to much! It must be miserable living with someone who has an illness although I am more active and do more with life than he does. I hope the HU keep doing its job and that your husband becomes more understanding too.
Very sorry to hear about your fella's attitude Harley, he doesn't sound like a gentleman to me and I reckon you have got every right to be angry at him. In fact I feel quite angry about the lack of empathy shown by peoples other halves on a few of the posts here. Weirdly I have the complete opposite; my lovely lady is a bit of a hypercondriac, there's always something wrong with her that she's moaning about which does irk me somewhat when I'm not feeling good - although she is very apologetic when she realises she's being a drama queen!
One thing though, have you thought about 'playing the cancer card' at work? Doing extra hours when you aren't feeling well can't be a good thing and no employer should demand that you take on extra work if it will contribute towards illness, and it might help with the fatigue a bit. My last employer was very good with me after I had explained about my illness, my manager even had a look at MPN Voice website, and never pressured me to do too much when I was feeling rough.
Hi IainF. Thank you for your support. My boss is letting me do the extra hours because I need the money and it is coming to an end next week, so will be harder up but less tired. Not sure if that's good or bad! I have 3 daughters, all drama queens and I find it very amusing, bless them.
What you need is a good mate ..possibly someone your own sex ,know why ?? Women understand women .. It's true ,, men are from another planet ,, I don't say this without some first hand experience , been on the roundabout a long time so you take my advice ,get yourself to a ladies group of some kind and make a friend you can share with , I made mates at slimmers world ,it taught me to share my feelings with other ladies .now I have a network I can call on for coffee or just a chat ,also helps them when I listen !! Twinkly Xx
Joking apart nobody with an MPN should feel or be made to feel guilty or ashamed of the impact their condition has on their life both physically or emotionally. This was brought home to me last week when a build up of family pressures on top of trying to cope with my own day to day struggle led to me right out of the blue having a mini breakdown. All my emotional angst poured out and it hurt like mad. And this happened with the loving support of my partner. So it goes to show it can all get just too much for any of us at times. Love to all. JR
Hi JR. I hope your mini breakdown is over, I think i'm still having a major one. Now been crying for over a week, you think i'd be empty by now! I hope you're feeling better. Mel x
Dear Mel, , Yeah I'm ont right side of my emotions for the time being at least.. it isn't easy to admit ones frailties that's a fact, especially when you're macho and overloaded with testosterone. Haha. To be honest I just sobbed me heart out which I think I needed to do as I'm one for bottling things up.
I must say I find it humbling that you take the time to think of others when you are struggling and I reckon it takes a special type of person to do so. Thank You. I sincerely hope you feel much more like facing up to lifes challenges soon.
Hi JR. I think a good cry is what's needed at times, man or woman! The only problem is the swollen eyes and the headache it leaves behind, but if it relieves some pressure it has to be worth it. You are no less macho in the eyes of anyone who matters or cares or in mine. Love Mel x
Hi Twinkly . I see your aura is shining as bright as ever and long may it as you are a truly genuine caring person. I dunno if the Rux messes with ones head but my mood does seem to ebb and flow a tad, mainly ebb, LOL . It is very kind of you to offer your support but I'm sure this is a blip in my otherwise contented life. . However I will take you up on your offer should I suffer a repeat experience which fingers crossed I wont. . . Love X
Hello Jedi . Just let me say to you ,I was very confident at the beginning of the Majic trial .i felt o,k, like I was normal again , but then I started getting red dreams , Lots of panic. Lots of running , blood and tears , It's like a horrible other world ,
I sometimes get blood running in my head , like it's released ,
And depressing headaches , these are side effects I'm sure .
It helps to know its the same for others . We feel isolated with this illness , it must be worse for you younger ones who are paying bills and struggling , your life is still up hill . I'm at an age iv done most things I planned to do ,single minded I was successful .. Try to find a focus you should write , it helps to put it down on paper , maybe that's your gift , it was for me .
Don't be a stranger ,trust me I'm a good mum and a good listener , I have two strong sons of 50 both bikers ,
Hi Mel, you are certainly no wimp!! I have PV and some times an unsympathetic husband who would rather ignore it than deal with it so I do understand. I wonder if it is because they are so worried about us and don't like to show what they would consider "weakness" or if they can't deal with it?
Every sympathy - I know we have got to deal with life also which is a pain on top of our MPN burdens. Take care, thinking about you Aime xxx
Thanks Aime. It seems that I told him 10 years ago when diagnosed, that I didn't want to be treated any differently and although I have explained that I am 10 years older and a little less healthy, he would rather stick with my original instruction. Funny that he can't remember conversations from yesterday!!!
Aw Mel, just seen your post so I am hoping you are feeling much better? I am so sorry your partner is being so unsupportive (and unkind). I think he is on weak grounds with his excuse about what you wanted 10 years ago. I am guessing you did not ask him to be unkind back then! Feel well soon! xxx
Thanks malachy. Not feeling better yet, seems to be one problem after another at the moment and I don't seem able to wear my happy face as I normally can. The bright side is, IT CAN ONLY GET BETTER!!! Thank you for replying and sorry that I'm still moaning. Mel x
Hello Harleydavidson Just wanted to send you a huge hug xxxxx You are not a wimp you are a strong, juggling mother who sometimes needs a little help herself. We sometimes forget that we need someone else to be strong for us and the problem is everyone is so used to us mums being strong for everyone else, they can't cope when you need them. We are always here for you xxxxx
Thank you Suska. I spent yesterday evening in the hospital with my middle daughter who is currently living with me and is 37 weeks pregnant, she appears to have preeclampsia and they may need to deliver over the next few days. I am her birthing partner. Very little sleep and am back at my desk. My partner last night, when I got home at 10.30 was freaking out at me because she had taken his phone charger instead of her own, (both the same) and didn't even ask if she or myself were ok! I think i may end up in an asylum before the week is out. Thank you for hug, it was badly needed. Love Mel x
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