Hi Guys, hope you are all as well as you can be. Paul I just wondered how you were getting on with work, your colleagues, etc.
My employers are progressing my early retirement through ill health but with a grudge! My boss made it plain he is not happy. When I'm working from home I have to detail what I'm doing. It's as if he doesn't trust me!! I ended up signing myself off and now my GP has signed me off for 4 weeks. My GP is not happy with the way I've been treated.
I have directed my employer to the MPN Voice site but I don't think he's bothered to look at it. If he did he would understand how I was feeling. I'm looking forward to my retirement, it will give me more time and energy to enjoy my grandkids.xxx Aime 😺😺
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Go Aime!! You will enjoy your retirement I do, but feel there is not enough hours in the day to do what I want to do, but love it just the same, I am more relaxed even though the money is not there anymore, but the one thing is I do not have to explain to anyone anymore, not they understood anyway.
Hi Jean, sounds good! I like the bit about not having to explain to anyone anymore because that is stressful particularly if you get a negative response - like but you're looking well, how can you be ill!
I hope it comes soon for you Aime, I agree with the others, I retired early and really enjoy the time I spend with the grandchildren. Building memories for them is more important than any job! My mum spent time with my children when I was busy working and they still say 'remember when... ' Mine and my brother and sister's children have such wonderful memories of their Gran and that's what I want for my grandchildren.
Since I retired I do think 'time is running out' for me, but from talking to friends they all say they felt that at first. I don't miss work at all. Employers don't seem to have any loyalty to their staff any longer. You're just a number!
Hi Judy, thank you for your kind words, the thought of more time with my grandchildren and more energy to enjoy them is keeping me going. There are a lot of things I have put off because I always tried to conserve my energy for work but hopefully soon that won't be necessary.
I'm not sure how long this process will take. HR have passed it to the Pension folk who may ask for more medical info.
Hope you are keeping well and the family too. Kindest regards Aime xx😺😺
Hi Aime, , doesn't surprise me their attitude. You can't see your MPN , you can function ok, therefore there's nowt much wrong with you. As for working from home well your skiving off !!. Thankfully you have an understanding GP. I'm sure GP is far from happy about how you're being treated. You stick it to em and get out as expediently and profitably as you possibly can. They don't deserve you.
Well Aime thanks for asking, have my ups downs like rest of us. There are days when I make Eeyore sound cheerful. I also have some Pooh days when I'm quite philosophical about my lot. But I suppose I'm more like Piglet really but I do try hard to be more Tigger like That kind of sums it up.
Good luck and hope things turn out for the best. X
You write the best posts Chris, I always look forward to reading them. For the last five + years you've made me smile so often with your insight and sense of humour.
Thank You for your feedback you will be entered into the monthly draw for a lifetime supply of everlasting gobstoppers (one supplied only). . Yours Faithfully W.Wonka
Here here Aime, Judy certainly has made a very positive impact on our Forum and been very supportive. We could form a Mutual Appreciation Society at this rate. But seriously credit where due to you ladies.
Judys so right about the humour and the insight into things. You keep this up through thick and thin(although not sure if thin applied on the last photo)! I could see your wife is feeding you well and you blamed it on tablets!!!😈😈😈
Seriously, keep it up, I'm the same as Judy - your posts make me smile too!! Kindest regards Aime xx😺😺
I know doesn't time fly! It will be 4 years in November that we met you at the living with MPN's day in London. I was with my youngest daughter Abbie who was pregnant at the time, she went back to the hotel for a sleep in the afternoon. She now has Joseph 3 and Sophie 8 weeks. I've spent the whole day with them today. I intended leaving before getting caught in rush hour traffic but Joseph climbed on my lap for a cuddle before I left and promptly fell asleep! He's so cuddly I couldn't move him.
I know you probably won't travel now they have forums in Scotland? I've reserved a place for London this year but haven't decided whether to definitely go. The terrorism thing does worry me, maybe I should just stay in sleepy Devon?
Hi Judy, I know 4 years since that forum in London, don't know where time goes! It was great meeting both you and your daughter and I'm planning coming back to the London event in the next few years but will be attending the Edinburgh one this year. I want to meet the haems at Edinburgh in case I need to go for a second opinion in the future, although I would travel to London if necessary.
I know the terrorism is a thought. We have the two grandkids tomorrow until Tuesday as their mum and dad are going to New York but I do worry which I suppose is silly as security will be the highest it's ever been.
Hope to see you , maybe next year. Kind regards Aime xx😺😺
Good to hear about your early retirement but its such a shame that the way they are treating you will result in the final relationship with them being a sour one.
My consultant did do me a 'to whom it may concern' letter outlining my condition so it could go on file. Not sure if that would help now with you or not but something worth considering, i made sure my line manager, HR and Occupation Health had a copy of it.
I am off work right now, i was sort of given an ultimatum at work to return in full capacity or go off sick to try and get myself properly right.
So I am off sick, I was signed off for 6 weeks, I have been off for just over 2 and go on holiday for 2 weeks on sunday, so will review it with my consultant on my return from holiday when i see him. I have also reduce my Rux to 10 mg twice a day from 15mg.
I am not happy about being off sick as I dont get paid but my health comes first. And while I think on the most part my line manager has been supportive I do feel a frustration that my request to reduce my responsibilities went unheeded, and also feel I have been driven down the route of being off from the behaviour of colleagues.
I feel better in myself right now, I am managing to get more excercise but also plenty of rest, i think i have slept every afternoon I have been off.
The thing I hate about our conditions is the unpredictable nature, at times I have thought I feel great I could be working, then for example last Thursday I fel absolutely shocking all day long and had to force myself not to lie in bed all day.
This seems to be the challenge when dealing with my employer, and no doubt you have had the same. They seem to be seeking some consistency with when I will be there and not and its so hard to do. I do also seem to get a feeling I am starting to be perceived as damaged goods, but this could just be my misreading the situation at a time I am not thinking clearly.
I do also have an assessment with mental health this week as my GP felt the whole situation is causing me stress and anxiety.
Wow Paul you put everything so clearly and totally explain how alot of us feel with these rare and unpredictable MPNs that not only affect everyone so differently, but individually the symptoms can vary so much from week to week !
As with alot of people my family and friends are really really supportive and kind but nezrly all agree how hard it must be for those of us who still work - we often look in good health and together with the symptoms especially the fatigue being so unpredictable it is easy for bosses and colleagues to not understand - lers face it - some GPs have trouble understanding it never mind non medics! I am so blessed with my family ,Fri emds, GP and Haematologist and Haem team and wish everyone had the same support and love I have.
I hope Aimee can soon get her retirement sorted - I was in medical profession all my working life but left early adter spinal surgery- like lots of others although I initially missed my job terribly it was the best thing I could have done . Time and fun to spend with my family especially my 3 beautiful grandkids and no stress of taking time off for hospital apts ( I'm often at 3 apts per week still ) but also being able to manage the fatigue without the stress of having to take time off work. I'm sure that really helps and also having the time to do the right type of exercise at the right time for you.
Hope you and all our MPN family keep well and can enjoy the Summer
Hi Paul, I'm so glad you've had a chat with your GP and understand how you feel about been giving ultimatums!! I keep thinking I'm misreading situations the something is confirmed and then I think, no I wasn't being paranoid, they are a heartless bunch!
The letter from your haem is good advice, so silly I never thought of that. I found the people who have treated me best were OH and my own GP. I have asked the boss to look at the MPN website but I don't think he'll bother. Sharp contrast to when I worked for the police,the inspector who was my boss asked for information so he could understand my PV better!
Take it easy Paul and try and enjoy your time off which I know is not easy with all the things you have to think about. I hope your haem appointment goes well and I would expect a mental health appointment to be with a person who was understanding and good at listening!
Kindest regards, let us know how you get on. Aime xx😺😺
Get out relax... I've had epilepsy over forty years, had over 400 seizures, then fully retired in 2013 on health grounds, since then four seizures, even two of those was due to changing medication, last year was free of seizures the first time in forty six years, they say retirement can be the best times of your life, believe it!! Your boss will be working away probably gaining grey hairs straining his health, taking his pain killers, for his stomach ulcers, and sleeping pills, restless nights secretly wishing 'I wish I could retire?' A good sympathetic GP is always a good thing! Since retiring I have become much closer to my near family, always a good 'medicational' benefit! Stress can be a major cause of decline in general health! STAY COOL..
Thank you Aldon57, I will take your advice. I already feel less stressed as I'm worrying less if I'm going to be fit to work. I had to reserve any energy I had for work which left nil for the good things in life.
You will find loads to do to fill your days and do nothing on the tired days...Best Wishes Aime,all will be fine and I bet your health improves,I am lucky,I am sculptor ,as I am sure I have said before...so self employed always. I am now late 70s,still love my work but have to limit to what P V allows...you will probably find a real interest to keep the brain working without the worry of boss men.Look forward to a new life !x Sally
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Fingers sore...PV or arthritis?
pain and numbness in finger tips 
Does everyone below retirement age work full time?
Fingers shriveling on palm side
Agonizing pain in finger tips.
