hi I joined this site about 6 months ago and have found it to be very interesting reading. This is the first time I have posted and wanted to ask if anyone has had to give up work due to condition. I was diagnosed with PV almost 2 years ago hydroxy has given me stable blood results however I am finding it increasingly difficult to continue to work full time My body just seems to be saying stop I don’t know what to do . Do I keep pushing in the hope it’ll get better or do I take early retirement and live .
keep working or retire : hi I joined this site... - MPN Voice
keep working or retire
Hevs67 hello.
I hear you. I am asking myself a bunch of related questions since my PV diagnosis a year ago. For example, what energy changes are due to the PV, what is due to the PV treatment (Peg) , what is natural aging, what is emotional, is it a passing phase, or a wake up call to shift my priorities. Tricky to sort out, nuanced and multi layered.
I wonder how extreme the fatigue or malaise is for you, how it shows up, what have you tried already in terms of time off, rest, nutrition, exercise, counseling…
I suspect there are a number of things that could help - whether or not you decide to keep working. Sharing some of the details could bring some insight from the forum.
Clearly you’re listening to your needs and you’re reaching out. All positive.
Sincere best wishes to you.
Hello and welcome to posting. Glad you decided to ask your first question.
I have had a MPN for over 30 years. It was originally ET but progressed to PV about 11 years ago. Now age 69, I continue to work part-time. I am fortunate in that I never experienced fatigue until it was the result of treatment. In my case, it was the venesection-induced iron deficiency that was the cause. The iatrogenic iron deficiency also cause mild memory/concentration loss. Note that I was also hydroxyurea intolerant and refractory to it. All of these adverse effects resolved and returned to normal when I initiated treatment with the interferons, Pegasys then Besremi. My quality of life improved significantly. I feel better now than I did 10 years ago.
While the PV can cause fatigue, so can the hydroxycarbamide. Sometimes the only clue is when did the symptom begin. The cause of what you are experiencing would be an issue to review with a MPN Specialist. Prior to making a major decision like giving up work, suggest you review your situation and options with an MPN expert.
Having said that, if you truly want to take an early retirement and can afford to do so, by all means go for it. I was able to retire on a full pension at age 55. I went back to work part-time mostly because I got bored. I enjoy the work I continue to do as well as volunteering in rare disease spaces. It keeps me busy and my mind engaged.
Wishing you all the best.
I am pondering the same question. I was diagnosed with ET 6 years ago, and I was stable until now. I now have high Iron in my blood, which could be Haemochromotosis. I am getting my results today. If I need to give blood two or three times a week, I will have no other option, but to take off sick. I am crunching the numbers to see if I can retire. I am 54 now, so I just need enough money to last about 13 years until my pension kicks in.
welcome to the forum and this is a great question.
I too ponder this one but need to find a financial advisor that can talk me through pensions….Pension advice for Dummies please 😂. I cannot make head nor tail of it.
I think the question is “can you afford to retire”. If you can, why not and like Hunter if you feel like it do some part time work or volunteer to keep you active.
I have PV and other co-morbidities and its difficult to ascertain what symptom is related to what and how best to manage it.
I think fatigue is one of the most challenging for work life but speak with your employer for support in work adjustments to help you.
This is lifelong condition we live with so important thing is to eat healthy, exercise to your level and keep positive. I have found an amazing Functional Medicine Practitioner who has helped me so much with looking at body as a whole and working to make me as healthy as possible to cope with health issues.
Quality of Life is my moto and must be good. Do all you can to find right support both from MPN Specialist and alternative practitioners
That is a decent question...i mean in hard to answer kind of way.I'm 70 and diagnosed ET at 69 Feb this year.... I've often wondered the same thing if I was still working. I suspect that I started getting ET back in 2014'ish now I know the symptoms. Best thing is to do what is best for yourself and just use this forum as a guidance. Everyone is different and there will not be a straight answer.
If your desperate to work ( need to!) try part time or volunteering. Personally, I think retirement is harder than working...at work you have set of parameters.. retirement, pah! I've never been so busy and that's not just the boxes I'm ticking that are reasonable to achieve.
So try it, work and find out what level you can achieve, otherwise set your own boxes to tick for the future.
Best wishes.
Good morning!
It’s odd isn’t it how different drugs affect us, how the condition itself affects us.
I was diagnosed 16 years ago with PV.
I was put straight on to hydroxicarbamide and felt absolutely fine - no fatigue, nothing!
However. I was lucky to work from home but was doing a lot, big house acre of garden two daughters two dogs running two (small) businesses and elderly mother living with us.
Although I felt fine, I agreed with my husband that it was time to slow down ( I was 54) so I did!
I think we have to do what we feel is right.
Pegylated interferon caused me massive problems. I have never ever felt so dreadful - it attacked my auto immune system and I am now a coeliac! Not a problem really but just goes to show, that if you think a drug isn’t right for you, don’t soldier on with it.
I m now 70, on Ruxolitinib, feel absolutely fine with bouts of fatigue and pains here and there , but at the end of the day I consider myself incredibly fortunate.
So, what am I trying to say? You don’t say what you do for a living. Can you work part time? My advice is do what your body is telling you to do. Don’t push yourself. One life we have and we must prioritise our health. I’m very glad I did. I enjoy our 4 young grandchildren, walk every day up hill and down dale, ( I don’t get out of bed until 9.30 at least - what a sloth) take care. All will be well.
Best wishes Louise
Louise,
Just a question….when you say Pegylated interferon attacked your immune system, were you taking Pegasys?
Thank you, Eileen
Hi Eileen I was on Pegasys.
Please note though, I had a very rare reaction. Most folk get on with it.
I stuck it for 3 months after reading that it can make you feel rotten but the symptoms will lessen.
I couldn’t stand it in the end - it put me in bed for 2 weeks and I m a hardy old boot.
There’s an article in the lancet ( takes a bit of wading through) outlining the fact that it can muck up your immune system. I was gluten sensitive before ( could tolerate a bit of toast or a small scone every other day or so) but jolly old Pegasys saw me into being a serious coeliac. Bit of a pain but not the end of the world. If you have lupus or rheumatoid arthritis be careful. X
Fatigue and tiredness are almost inevitable as we contend with our conditions and the side effects of treatments - and the toll of time. I started work at age 10 in the village shop weighing tea and coffee and after a multi role life decided to retire at 75....and I felt so irrelevant......
My advice for what is worth is to work while you can or need to but for goodness sake make sure that you have something to move on to - hobbies, voluntary work, part-time work, travel, but do not think that you can just switch off, relax and do nothing - life goes on but it needs to have direction.
I understand completely! MPN Voice has an excellent section on Employment Rights. It explains Reasonable Adjustments. I have ET +JAK2 and was working full time and found the fatigue so debilitating. The company arranged for me to see an Occupational Therapist who explained I was covered under the Disability Discrimination Act. It meant I didn’t have to take leave or sick leave for hospital appointments and could arrange my hours to better suit me. All the best Maggie
thank you all so much for your replies they truly are appreciated. I work in nursery with 3 and 4 year olds so taking the foot of the pedal is difficult although I do have excellent work colleagues. I have lots to think about
The fatigue issue is daunting and I wish you luck with finding a solution.
Re retiring - I retired from my first job as a partner in a large consulting firm at the age of 43. Many thought I was crazy. Now, at the age of 77, I still have no regrets. I would probably have more money now but I have enough and I've had the fullest life ever - started my own business and did that for 15 years, did a lot of sailing, ran a boatyard for 5 years and generally enjoyed living in the saltmarsh at the jersey shore with a healthy dose of nature. So, I say if you can do it, give it serious consideration. This is your life and, as Bob Dylan once said, "if you ain't livin, you're dying." I'm not being glib - just honest. We all only get 1 shot at this. Enjoy
Hey there Saltmarsh,
I have to say that it doesn't sound at all like you retired, but instead that you diversified your work experiences and did whatever work seemed like a good fit.
Owning your own business, sailing [presumably for some form of remuneration], and operating a boatyard are all additional careers, not really retirement.
For myself, I'm hopefully going to be eligible for a partial state pension by the 2nd 1/2 of 2025, which hopefully in conjunction with my modest retirement investments [401Ks, 403Bs, and an IRA] and Social Security, if there's any money left in it, will keep me living in the style to which I'd like to become accustomed.
Nonetheless, I have a fair amount of welding and metal-working tools and equipment and would like to try to earn some extra funds vis use of it [even though I have only limited skills and experience so far.
I expect that, plus performing some much-delayed upgrades and repairs around our rural property will keep me from ever being bored.
I forgot to say that one of my other 'retirement' goals [shared w/ SWMBO] is to work on becoming stronger and more physically fit than I have time to do now.
It does sound like you've got a good plan. Actually, my sailing time was made possible by having my own business so I was able to take large blocks of time off. Besides the fact that my corporate job was very stressful with buckets of unhealthy lifestyle choices, the final decision to quit was made when my wife became pregnant with our first child. Continuing in my line of work and being a father were not aligned. So that was the final straw.
I'll just add that your last paragraph is the real dividend. I sincerely doubt I'd still be alive had I stayed in that consulting job. Now I am a very fit 77 year old guy who requires no other meds except the HU for PV thanks to my decision to get out. Every day I feel blessed that I made that decision 34 years ago. Trust me, from what you've said I think you'll be busy with lots of things and, as a dividend, healthy.
Wishing you the very best as you move forward on the next chapter.
Hi and welcome to posting. I'll offer a different tack. Might be worth talking to the Blood Cancer UK team about your ability to claim benefits. You may be eligible for PIP type support. I'd also talk to your employer about reduced hours. This is a cancer and they do have to make reasonable adjustments for you.
I hope all works out well.
I retired at 53 as was in a very high pressure long hour job & was suffering intolerable tiredness. I was able to do because my medical insurance made it possible following my MPN diagnosis.
It’s given me time to look after myself which has been invaluable.
I had to leave work as my body was the same. I was so drained and my body so heavy. I have E.T and have just started treatment for this. I was lucky enough that my family said its just a job listen to your body. If in time you want to work again do it but for now rest your body. I hope you find what is best for you .
Keep active but in moderate.Do not push your self too hard.
It will keep focus your body and mind much better than retire.
It is also healthy.
Enjoy it.
Cheers
oh yes do.
Or reduce your hours
Or, take short cuts, have a gardener, cleaner, ironer.
Lastly think about applying for PIPS
Hi Hevs, I think this so dependent on your job and what it means to you. If it is fulfilling and feeds you mentally or is it just a grind. Even if you find it fulfilling and fabulous you may still have to cut back and do less and be more selective of what you do, do. I’m 74 with ET and I love my job, but I’ve had to cut back because of fatigue. So I’ve become more choosy. Good luck with your choice.