MPN, stress, retirement

[Searcher56]

Just would like to know, did any fellow MPNers find that your condition improved when you retired? I still have 3 years left before I get my pension at 66 and I am wondering if it would help if I cut back on working hours.

[Aime]

The answer to that is yes definitely. It takes the stress away from worrying that you are going to be fit to work. I was retired on I’ll Health with full council pension. Kindest regards Aime xx😻😻

[Sand-Dancer]

I have to say yes. I retired early and quite a bit before my pension as I wanted to feel good in retirement and I found that relaxation is the way forward 😊.

[Hidden]

Hi Searcher, that is a very good question, because I think stress has a lot to play in peoples health. I am still working almost full time at nearly 67. I do enjoy my job as a nurse but often wonder if my health could be so much better without shift work? My psoriasis is not good at the moment and wonder if that is cause by stress of daily work!! Have ET.

[Searcher56 in reply to Hidden]

You are really doing well still working as a nurse at the age of 67, being on one's feet all day. What is your MPN and how are you managing it?

[Hidden in reply to Searcher56]

I have ET with CALR. I just take aspirin 100mg daily and that is all. Platelets sitting at 701 last time had my bloods done. Have blood tests every months and now see my Haem 18monthly. Other than that nothing else. Still wouldn't know I had it. Diagnosis in 2015. Lyn

[Hidden in reply to Hidden]

Sorry it was every 6months for blood tests.

[Wyebird in reply to Hidden]

Goodness how do you keep going?

[Hidden in reply to Wyebird]

No problems really. I get a bit tired from time to time. But sleep well. I like my job as it keeps me moving!!

[Wyebird in reply to Hidden]

Good for you I’d retired 3 years before diagnosed with et calr. I feel I’m getting worse. Mixed with no desire to get up in the mornings until the dogs bark. I used to be really motivated and went to the gym but fatigue low heamoglobin and a recent knee op have squashed what little motivation I had. Keep going as long as possible

Good luck

[Hidden in reply to Wyebird]

Why did you have to go on HU?

[Searcher56 in reply to Hidden]

I went to see a doctor in 2016 because I thought I had breast cancer. I didn't but the doctor sent me off for a routine blood test and that is how it came to light that I had elevated platelets at 1000. The haematology dept at the local hospital diagnosed me with ET JAK2+ and I was put on 2x500mg HU. The diagnosis came as a bit of a shock and I started really to look after my health from then on. I now take 9x500mg a week and my platelets hover around 600-700. I don't really have any symptoms to speak off. I currently think that MPN is not the cause, rather a symptom, of something else. This view of course may change.

[Wyebird in reply to Hidden]

I had a stroke at age 50 not Mpns related.

[baggies]

I retired in August age 65 with p v best thing I have done not so tired best of luck terry

[Peterwi]

I had a problem with concentration at work, maybe because of stress. After retirement I don’t find that I have that problem. So I would say yes it helped a lot to retire.

[MPort]

Hi Searcher, I think it depends on what stage of your MPN journey you are at. What your counts are and what medication you are on. During the first stages I found working full time (teaching) very hard. Regular venesections took their toll. Then medication (Hydrea plus venesections) reaction was debilitating. But I continued. Came home and just flopped. Then after about 18 months I reached 60 (I am now 70) and took the option to retire. After that I went on Pegasys and it took about a year to come to terms with that so I was very pleased to have retired. I have now been stable for some years and have only rare occasional overwhelming fatigue. The Pegasys dose keeps HCT low so no venesections. If I had got through to this stage I would be able to work. Being retired gives you time to rest and enjoy the energetic times. But also time to focus on MPN issues. When working there isn't often time to think too much. Good luck with your decision. Mairead

[Mallard]

Hi Searcher56

I was diagnosed with ET in 2011 and worked full time. I had struggled for a while with severe fatigue and brain fog and suspected it might be the menopause. (I was 53 at the time) My GP ran some tests to see if it was hormones and that is how we discovered I had ET Jak2 Positive. I started on Analgride but had to change to Hydroxy because of heart flutters. Up until this point I had been energetic, on the ball, and loved my job. From this point onwards it was all downhill; I felt stressed most of the time and shattered constantly. I limped on for the next 5 years and eventually went off long term sick at 58 and was medically retired at 59. Since retirement, I can honestly say I have my life back. I still get fluctuating platelets, and have to adjust the Hydroxy dosage, but not as often. However, the main difference is, not having to stress over work, decisions, projects, commuting, etc - that pressure has been lifted. I am happier than I have been in years. Every morning I wake up, I remember I don’t have to jump up and get ready for work and I can’t tell you how wonderful that feels. My morning coffee is just the best drink of the day. So for me personally it was the best decision I ever made.

Best wishes x

[Borage]

I was retired from the NHS aged 56. I was given extra years to add to my small pension. Why ever were we encouraged and allowed to have our Superannuation payments refunded?

The years before had been an immense struggle, and I had to reduce the work load, most unwillingly, bit by bit, ending up working in clinic. I was nearly sent to auditing in the basement, but after reviewing one set of patient notes I said it would make me suicidal.

The overwhelming fatigue from ET and Hydroxycarbamide added to physical problems of chronic back pain and stress-related angina.

The brain fog did not help in a job where you had to have your wits about you. Midwifery is extremely stressful, it is your duty to recognise the first sign of something going wrong and take the correct action. Lives depend on you, nothing must be missed. The workload was intolerable, never enough delivery rooms or beds for the unpredictable inrush of patients. Staff sickness levels were always high.

I have been retired for nearly eight years. The nightmares are less frequent now, usually waking in a panic about overcrowded wards and no staff.

Retirement was the right decision. I have recovered a lot of my health.

Rest and reduced stress has just about got rid of the angina. I get enough sleep, no more 11-12 hour night shifts or finishing a late shift at midnight and getting up at 5.30 am to get to work. Hours and hours of unpaid overtime and missed meal breaks every week.

I am not driving home exhausted, in the morning rush hour, on one of the busiest stretches of motorway in the Midlands.

I have regular meals and enough fluids and toilet breaks. It is called Midwives’ bladder for a reason. (Always pee before second stage or you can guarantee she will be very slow delivering.)

Pilates and Yoga have strengthened and straightened my back and got rid of the limp.

In my long career I have looked after patients with just about every infectious and contagious condition in circulation. Patients cough in your face and labouring women are liberal with various body fluids. Midwives are pretty hands-on, close up, and at risk. We are often at the receiving end of (unintentional) physical injuries from women who kick out or grab onto us.

I have had numerous injuries from the heavy lifting we were taught, from moving beds and equipment, overhead theatre lights, and from needle stabs and cuts, bumps, trips and slips in a very hazardous and busy workplace.

It has been a relief to shield from Covid-19 instead of doing shifts in Maternity High Dependency where I have worked. I feel for the staff there now.

It is so good to be retired. I turned down every attempt to sign me up for voluntary work after I retired. I have done more than my share for the Church and the community.

I was worried about the reduced income, made worse by the State Pension for women being deferred for 6-7 years. Our pay was never good, the pension is not great, but the mortgage is paid off just because we have paid for so many years, and we have time to live economically.