Working with fatigue and brain fog=PV

[BeckyM4]

Hello all! I'm looking for your opinions and experience with this. I work as a math interventionist at our local elementary school. Several other duties are included-data entry, morning supervisor....

My problem is that by 12:00, I can't think straight, I'm forgetful, and I hardly have the energy to talk, let alone teach. When I mentioned fatigue to my Oncologist 6 months ago, he laughed and said I'm just like his wife-not realizing how much I do throughout the day. I don't think he gets it! It's really bothering me, especially since we are still in the first quarter of the school year. I get anxious thinking about having to do this 5 days a week through May. And to top it off, my headaches are getting worse again.

I take 1000mg Hydrox/day. This is the lowest dose I've been on for many years. Surely, it isn't just the medicine? I didn't feel this bad when I was on a higher dose.

How do you all deal with these issues? Any ideas on what I should do? I know the stress isn't helping.

But on a lighter note------I'm gonna be a grandma!! March can't come soon enough!

Thanks for all your help!

Becky

[Foss33]

Hi Becky,

I am a teaching assistant in a primary school, I have PV managed with aspirin and venesection at the moment.

Just wanted to share with you that I am feeling exactly the same at the moment, sometimes I can't even finish a sentence because the brain fog is so much.

I do share how I'm feeling with those that I work closest to, they offer support and understanding.

I am back at the hospital today just 2 weeks after last venesection as my heamatocrit still over target of .45

I also share your frustration with response from hospital some Drs say not related to PV others say it is.

My GP suggested that I try to stick to seeing the same haemotologist in order to create some consistency in the advice I'm given.

Hope this helps just wanted you to know you are not alone.

Congratulations also on your news.

Andrea

[jane13]

I also have brain fog and serious fatigue and aches all over the place esp in my legs. Because of this it's tempting not to get enough exercise so then i don't sleep and it gets worse and worse! I have tried correlating what i eat to how bad i feel but i can't spot any links. my haem, who is sympathetic, doesn't think all my symptoms are mf related but i am only 61.....

Sorry, not much help!!

[Mummyto4c]

Oh I work with pre fives and by 1pm I was done in each day. My gp has signed me off work for the moment. I try to exercise every day but always seem to still end up having a nap each day . I also have been getting really bad aches in my legs I'm back at my heamotolagst tomorrow and for the first time I'm armed with a list of questions xx

[BeckyM4 in reply to Mummyto4c]

Good luck-hope you get answers!

[JohnSC]

Hi Becky,

I am starting to share your experience. I was diagnosed with PV a few months ago and had been feeling OK but in the last couple of weeks I can feel my energy levels decreasing and I am struggling to keep focus at work. Luckily I am getting near retirement which I am thinking of bringing forward a couple of months to March. So we will both have something to look forward to next Spring.

All the Best

John

[Jerrymohler]

Congrats, Grandma! Would it be possible to work half days? Or maybe job sharing?

[BeckyM4 in reply to Jerrymohler]

That's a great thought! I see the doc next week so I'll see what he says. Then I may have a conversation with administration.