Hi Guys, just wondered do you take family with you when you get results of tests? I find that if my hubby is with me it gives me support on the one hand but then I don't always ask all the questions I should in case, I suppose, I worry him.
Another question: do you have close family who don't realise how serious your MPD is or is it me who is worrying too much about tests, etc?
Hi Aime, so far I have gone on my own, as I don't want to disrupt my hubby's work as well. I do keep him informed, and show him letters etc.. I think this works best for me, but I can see that sometime I may want moral support too. A list is good too!
Hi Aime. My wife insists on accompanying me and I respect her for that as the appointments take up most of the morning and can be a tad tedious. But like you I sometimes feel I hold back a bit on the difficult stuff to spare her feelings. However on balance I feel I benefit from her unwavering support as I see folk at clinic on their own and wonder if they have loving partners to share their burden with or return home to an empty house. My wife would feel very hurt if I said 'Ay up love I think I'll go t'd clinic on me todd'. Im sure I'd be at A and E first.
We all worry about our condition and associated tests at times so you're quite normal there. And yes its not just family members but friends who aren;t fully aware of my condition. I text my mates a link to an MPN site so they might understand why I didnt always feel like playing team snooker which was a late finish. Take care
Hi Aime.
I go to the hospital my self most of the time, if my family are off school or work they come with me, i dont mind going my self, truthfuly it's some times the only time i have to my self.
I always try to think positive every day that helps me, i live day to day.
To your other question- my family find it hard to understand what i go through, (maybe bacause they have not gone through anything like it).
Over the 7 years i've had blood clot in my brain, E.T, blood clot in my chest, headaches, now waiting to get results from my MRI brain scan, (which i know i have a problem with my Vains but have to wait it the doctor says that is right). My family always say i'm a strong person and they could not handle what i go through but i do get told " to get on with it" or "stop talking about it thats all you go on about", but i neveer go on about it i hind most of the thing that happen to me because i cant stand the moaning off my family. I get more support off my inlaws more.
I love my life, i work, i have kids. loving hubby and i'm here to talk about it if any one needs me.
Take care (sorry if i have gone on to much) xx
From Wendy
My wife was with me at diagnosis and always comes with me for anything other than simple standard appointments. Two sets of ears are better than one, so we compare notes afterwards. We both know the full situation, dont hide anything and each ask any question we feel is appropriate, including the potentially unpleasant ones; it is how we have always been. I would also recommend a similar approach to anyone. How do you know that your family aren't looking up the disease on the internet, worrying and not letting you know?
I am two years post SCT for MF and we went through it together. Now I do the same for my wife as she is being treated for breast cancer.
One thing often said about Myeloproliferative diseases is that sufferers dont look ill and even family sometimes cant understand how one feels. The doctors are the experts so it is better for those involved to hear things directly from them; it might help with their understanding.
Hi Wendy & Jedi - thank you for taking the time to reply. I think I am walking a thin line sometimes by saying how I feel and what I am worried about with my PV and results, etc. and worrying that if I say too much I will put my hubby and family thro stress. If that makes sense!!
I nip out from work, jump on the tube to London Bridge station. Have the e blood test, see the Doc. Then rush back to work again. It sometimes worries me that I'm a little blasé about my diagnoses and perhaps should be asking more about my prognosis, but do I really want to know?
Hi Guys, thank you for all your replies. I know I should probably just tell the whole family everything but I don't see the point in worrying them about what may not happen. I would rather get the facts and then tell them but in doing that I know I am leaving myself with less support - thank goodness for this website!
I go on my own and tell my family what the results are. My wife is always supportive and realises I have good days and bad days - so tired at times!!. I guess because I have just accepted the situation - I didn't do anything to cause it, can't really do anything to make it better so just have to get on with it, she adopts the same philosophy.
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