Wow! Feeling good.........

[Polly-PV]

Not so long ago Claracluck posted a question about whether altering the time of day when taking Hydroxy would help with alleviating the dreaded fatigue. Following my haems advice, I switched to taking my Mon-Fri dose to a couple of hours before bed instead of early morning. That was just a week ago & the difference has been pretty amazing. Not only is my sleep better but I no longer have the urge to sit in the nearest chair in the afternoons for that ol Saga snooze. My energy level post lunch is much higher & I generally feel much more lively & alert. Fantastic! Has worked for me, so it may be worth a quick word with your consultant to check if it's a feasible option for you. Feels good to share a positive rather than a worry or concern for once. Hope all are warm & well this morning, Poll x

[sksar]

Worked for me too Polly. I used to take my aspirin and Hu in the morning and felt the fatigue during the day. Still take in the morning after breakfast but switched the HU to just before bedtime. I too sleep better and the fatigue is now a very rare occurrence. Keep warm and well its snowing and blowing a hoolie here today. Regards sksar.

[Twinkly]

That sounds really good to me ! I take my pills as I get up ,then 3 as I do to bed ..

By spreading them it helps my met ableism to cope better ,I am on the Majic trial

Taking 5 ruxolitinib a day ,,plus clopitorol for blood thinning as well .copeing really well .

Recently bought a nutri bomb to juice and smoothy .really gives me a boost to be able to take in fruit and veg I normally couldn't digest ..I recommend it as well if you need to get goodness while you loose weight ,, Twinkly. Xxx

[Hidden]

Pleased to hear it has worked for you Polly and you are feeling less tired. My haem recommended to me when I started taking HU that I took eve or before bed so I was lucky but pleased it is working for you Liz C xxx

[JediReject]

WOW Polly, firstly let me say it's great that you have posted summat positive. Made my day for sure. I suppose with all of our MPN's our associated problems naturally become the focus of our outpourings.

I think I got used to my Hydrox over the years but for a time it wiped me out int aftnoon, , in the last couple years it didnt have the same effect on my post lunch life which is probably why it started to lose it's edge. But don't let's knock it coz I thought of it as necessary evil and it worked for me for many years.

Anyway back to you sharing your positive news with us as I don't want to let go without saying I've always thought it might be good if we as a community living with often unpredictable and difficult conditions had a place here, like a 'Goodnews Board'. to post our daily successes however small or seemingly insignificant and no matter what they are. . I'm sure that as a guy that needs a boost, most days I would get real inspiration from it and want to contribute.

Ho Hum there I go again. Thanks Polly, JR x

[lizzziep]

My haem always recommended that I take the HU in the evening and the aspirin in the morning. I do get fatigued but nothing major. Glad it works for you.

Yes we have had a little snow and everything has come to a standstill!!!!

X

[Polly-PV]

In agreement there, JR, a 'Good News' posting board could be inspiring-particularly for those living with an MPN day in day out. Because there are few obvious external visual signs, I feel most of us are living with this invisible monkey on our shoulder in a pretty secret, silent sorta way. Yes, we can share here the negative impact living with an MPN is having on our day to day lives because we're amongst those who understand. However, to say to friends/family/work colleagues etc that you're having a rough day, they don't actually 'get it'! Soooo, I tend to home in on the positive & it then opens up a kinda curiosity on their part. For eg, was saying to my daughter how my fatigue is now a whole lot better she then revealed she wasn't aware it had been so debilitating. By talking about my 'solution' she now has more awareness of the problem-bit of a paradox there methinks! Another bit of good news....got my exemption from prescription charges form (FP summat or other!) all filled out & signed by my doc y'day so that's a few quid I can now spend on some fripperies for myself!!! All in the name of self care you understand! Anyone else got anything upbeat, motivating, inspiring to share today?!! Love to all, Poll x

[spikesnana]

Thanks so much for sharing. I also have dreaded fatigue around 2 in the afternoon. I'm going to try the evening for my HU also. Crossing my fingers it works. Need to get back to exercising again.

[JediReject]

Hi Polly I like your approach of homing in on your positive and commenting on that rather than what I guess we mostly do when we aren't having a good time of it. I am always very conscious or wary of telling peops exactly how I feel when they ask because I suspect most usually ask out of politeness and aren't really that interested. I find it's especially when I get a tad technical about my treatment or it has owt to do with needles. Also I don't want to alienate my friends / associates so they 'avoid' me. So I usually say 'Oh I'm OK thanks' or 'So-so ta'. So I shall try your approach thanks.

Glad you got your scrips foc at last. . I suppose it's only right I contribute a positive, , so I always get a tic-tac moment -other mints are available- on Fridays when we pick our lovely Grand-daughter up from school and she comes skipping out, says 'Hiya Grandad' and gives me a toothy smile. It don't get better than that for me. .

Cheers Polly - don't let that 'invisible monkey' weigh you down lass. x