Increasingly outspoken!: Hi everyone I feel... - MPN Voice

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Increasingly outspoken!

Loubprv profile image
LoubprvVolunteer
39 Replies

Hi everyone I feel somewhat embarrassed and a bit of an idiot asking this question but the longer I have PV ( and living well with it) and the longer I take Hydroxcarbamide ( 1000 mgs a day) the blunter and more outspoken I ve become.

Is anyone else experiencing that or is it just me and the onset of old age!!

Louise

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Loubprv profile image
Loubprv
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39 Replies
Inca profile image
Inca

Absolutely Both!!! Good to see your post...I am about to mail you,lost it & just found it the other day.No I am not sensible & fill in contacts ,I still scribble on bits of paper or sketch book...that is old age!!!Hope all is well with you otherwise😍 Sally

Loubprv profile image
LoubprvVolunteer in reply to Inca

Hi Sally Yes all well! I think my outspoken bit just be age! X

Loubprv profile image
LoubprvVolunteer in reply to Loubprv

Ps and I too still scribble on bits of paper - and the back of my hand.Memory gone to pot. x

Anag profile image
Anag in reply to Loubprv

It’s good to joke about memory, but it’s a serious thing. No one should have memory problems. Once they start, it means we have already had 20 to 30 years of toxic chemicals, bad diet, bad air, off hormones, too little exercise, too many meds, trauma, etc in our lives. It could be a combo of any or all the above. A huge culprit is amalgams, right next the brain and full of 55% highly toxic, leaky mercury!! Also bad digestion and too much sugar and carbs in life are also a common, or low Vit 12. My father had severe B12 deficite dimentia. We started giving him B12 shots at the age of 83 and his brain started growing and learning again!!

The brain is the only part of us that has the ability to stay young till our body gives up!! I got my 30 fillings out (over 1,5 years) did and do proper metal detox (especially Aluminium), liver detox, keep my hormones, vita and minerals balanced and my brain (had first signs of dementia at 45 because of my undiagnosed thick ET blood) at 56 is getting steadily better. Acetyl L-Carnitine is also helping!

Hope to have helped!

Ps: I’ve been scribbling on paper all my life! 😂

mhos61 profile image
mhos61

Hi Louise, that would be a no in my case; however, I have become far more assertive with regards to healthcare. I follow up and question things more. I advocate strongly for my hubby’s healthcare too, but on the whole I consider myself quite diplomatic.

I thought you were recently considering a transfer to Pegasys, has that not proven suitable?

Loubprv profile image
LoubprvVolunteer in reply to mhos61

HiI think it’s my age really.

Re HU Having chatted to consultant I think it’s better the devil you know so am sticking with it!

Louise x

mhos61 profile image
mhos61 in reply to Loubprv

It could be some form of reaction to the imposed restrictions of the last 18 months too.

JediReject profile image
JediReject

Hi Louise , , once again you make me laugh out loud. . As we age we become much wiser and far less tolerant of folk sticking their oar in , trying to get one over on us or just taking the proverbial you know what. In short we don't take the cxxp that we once might of accepted and because of years of building up this resilience we aren't backwards in coming forwards in telling said folk politely or otherwise to go lay an egg . 😃. Hope you're doing ok x

Loubprv profile image
LoubprvVolunteer in reply to JediReject

I m fine Chris thanks - more to the point - how are you? x

JediReject profile image
JediReject in reply to Loubprv

Ticketyboo Thanks Louise , , trundling along ok I reckon with a few ups and downs. Im trying hard to tackle as many wee things that need doing round our house and garden together with my Dad's and my recently bereaved Sis in Laws without keeling over. But it's good to feel useful again. Hope all is well with you and family x

Loubprv profile image
LoubprvVolunteer in reply to JediReject

Chris I’ve just tried to email you. Have you changed your address? X

friendofpiglet profile image
friendofpiglet

No, it's not just you. I've never been a tolerant chap but have generally managed to suppress my intolerance.

But over the past couple of years, what with all the enforced isolation and bombardment with gloom and despondency from the reptiles of the media, the apparent self serving behaviour of our politicians etc. I now find myself much more inclined to let rip!

I am taking intolerance as one of the privileges of advancing age, I won't overuse it but won't waste it either.

Andy ("friendofpiglet", because I couldn't sign up as Eeyore by the way!!!)

Loubprv profile image
LoubprvVolunteer in reply to friendofpiglet

Thanks so much! Made me laugh!

friendofpiglet profile image
friendofpiglet

I suspect that making others laugh helps me get away with outspoken intolerance. Try it - works for me.

Uzza profile image
Uzza

I'm not sure it's the hydroxy...perhaps your context.

Wyebird profile image
Wyebird

I think it’s the latter. I’m now content in my own skin. Yes I am a little more outspoken when nessecary but also more tolerant and sympathetic xx

Scaredy_cat profile image
Scaredy_cat

Since my diagnosis for myelofibrosis level 2 2 in the summer, I have taken an attitude that if I've got a limited life span I'm not going to put up with avoidable c**p. I don't see anything wrong with that

Loubprv profile image
LoubprvVolunteer

Wonderful! I think I ve adopted that attitude too. We ve been waiting fir a log burner to be installed for 3 months. Just been in and told them to get their act together!

hunter5582 profile image
hunter5582

Assertive patients receive higher quality care. Passive patients do not. Being more outspoken is not a sign of old age. It is a sign of wisdom gained through lived experience. I learned that lesson the hard way. Never again!

Loubprv profile image
LoubprvVolunteer in reply to hunter5582

Excellent thanks Hunter. I m afraid in my case it hasn’t only applied to medics - but to a friend whose hol cottage we rented - and it wasn’t clean!

Tico profile image
Tico in reply to Loubprv

Wow Louise, even I think thats a step too far! I think i'd be more diplomatic were friends are concerned.I can be outspoken at times depending on the circumstances. It's definetly not your P.V or Hydroxy. I don't even think its old age, I think some people are just predisposed to be that way! 😉 Tina.

Loubprv profile image
LoubprvVolunteer in reply to Tico

Thanks Tina not really supposed to discuss none Med stuff here ( sorry Maz) but having paid £1800 for this place for a week and then discovered the bathrooms hadn’t been cleaned - I spat out my dummy! xx

Tico profile image
Tico in reply to Loubprv

😱😱😱

Mazcd profile image
MazcdPartnerMPNVoice in reply to Loubprv

forgiven x

Loubprv profile image
LoubprvVolunteer in reply to Mazcd

Xx

Meatloaf9 profile image
Meatloaf9

Hi Louise,I think these diseases, life in 2021, medications and all the pressures of getting older (a good thing) all contribute to us being more willing to express what we are really feeling. I think that is a good thing, honesty is a good thing. My wife says I am just as you describe (getting older and cranky). I try to be diplomatic when it is appropriate but other than those few times I tend to speak my mind about various things, especially when I visit my Heme/Onc, I want answers to questions that seem to make them uncomfortable in answering. So, I think speaking you mind is a good thing as long as we are all honest in what we say. Keep it up and live long and prosper.

Loubprv profile image
LoubprvVolunteer in reply to Meatloaf9

Great reply thanks so much!

Joetcalr profile image
Joetcalr

One of the things I was asked on first diagnosis was: had I been falling out with people more? So I guess cos my brain was clogged up with platelets. I had been falling out with people, still am! Jo

Loubprv profile image
LoubprvVolunteer in reply to Joetcalr

Thanks Jo, that’s so heartening. I was beginning to wonder what was wrong with me. I’ve always been on the side of being blunt but am getting worse!Hey ho. X

Janis12 profile image
Janis12

Hi, I don't think it is anything to do with our condition or meds I would say it is more about the ageing process....we just don't edit our words any more. We say what we think, remaining polite of course, but we get our point across. I know it's age, all of my friends are of a similar age and they have noticed the same thing. I don't worry about it if the recipient does not like it tough cookie!!

Loubprv profile image
LoubprvVolunteer in reply to Janis12

Loving all these wonderful replies! Thanks so much. I ll say I’m polite but straightforward 😂

Vtr1000 profile image
Vtr1000

Hi Loubprv, before my diagnosis I would tolerate others. Now I’m of the opinion I can’t be wasting my time with tolerating. Rightly or wrongly, that’s my choice. No meds involved.

Pollygator profile image
Pollygator

Thanks Louise, I laughed a lot. Sure, lets just say it is the disease or the Hydroxy. My "say what you feel and whatever you are thinking" started probably around the onset of ET and it is getting way worse with age. AND I LOVE IT - Seems to be working for me OK so keep it up!

Loubprv profile image
LoubprvVolunteer

Yey! Thanks.I think I’m turning into Jeremy Clarkson actually. 😂😂

JediReject profile image
JediReject in reply to Loubprv

😨 ones enough on this planet thank you x

Inca profile image
Inca in reply to JediReject

Well my consultants have christened me ' La Femme Dangerous', cos I ask a lot of questions that often they can't or don't want to answer.!No we don't want another J C ,but I think life at the moment makes us much more 'umpty ' as we say in Yorkshire. 👹😍

JediReject profile image
JediReject in reply to Inca

Aye I like that description though maybe 'La femme fatale' ? Maybe with all that's going on and in some cases not going on as it ought we are that wee bit more Umpty as you Yorkshire lasses say . As you might guess im not a JC fan but hes in a privileged position to voice his opinions whether agreeable or not. But i guess folk that are controversial or opinionated in their outlook are often only saying what a number of us are thinking and we need them .

Chris

Inca profile image
Inca in reply to JediReject

Aye I like 'fatale' better,we are a bit outspoken in Yorkshire tho I am normally quiet creature,it's just wanting to know what is going on with the ancient body isn't it ?I notice J C is a country boy now,that will shut him up a grumpy old Yorkshire ram clouting him,that's the solution.Keep well Chris😍 Sally

Loubprv profile image
LoubprvVolunteer

Sent a copy of his article re the Swedish Doom Gnome to you. Made me laugh out loud.

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