Does everyone below retirement age work full time?

[harleydavidson]

I'm 52 and have had PV for at least 14 years now. I work 38 hours a week but am finding it tougher with every passing week. How do you all cope?

Love Mel x

[clubdino]

Hello Mel,

I'm almost 42 with ET for at least 15 years. I found a solution for my pains (Cymbalta) but as for my fatigue I still suffer. A couple months ago I finally reduced my work hours to 30 hours a week with the help of a doctors note. It has put me in a difficult spot financially but it has helped me out a lot physically. It's worth it. I hope that helps.

[harleydavidson]

Thanks clubdino. The lack of earnings really scares me.

[Aime]

Hi Mel, I retired at 59 but was struggling before that for quite a number of years, coping with the fatigue, the job, family and everything else. For me it was the best thing I ever did and I’ve never regretted it. I actually regret struggling for so long! I got early retirement due to ill health and got my full pension early. I took part of it as a lump sum and divided that into six parts, one for every year until I get my oap pension at 66.

My hubby retired last year at 65. We are honestly not short of money and have been able still to afford holidays. I’m told by friends that I’m like a different person without the stress of worrying that I might not be fit for work. I still struggle with fatigue and more so with my arthritic issues but I have the freedom that I can collapse in a heap if I need to! I think when you reach the struggling stage, you have to put yourself first for a change and do what’s best for you.

Hope this helps, kindest regards Aime xx😻😻

[harleydavidson in reply to Aime]

Thank you Aime, glad you're enjoying life x

[Marossi]

I was working almost full time as a secondary school teacher and found it a real struggle to get through the school year last year. This year I asked to go 50% and it was the right decision for me. Yes, things are s little tighter financially but I feel so much better for it its definitely worth it. It’s true that I have turned a corner since the initial diagnosis (PV in October 2017). After a year of struggling with fatigue and frequently feeling nauseous and dizzy my blood counts are now under control (thanks to Pegasys) and I feel much better, more energetic and less stressed. Although a lot of this improvement is due to the wonderful medical care I have received, I’m sure the decreased work load helped, too.

[harleydavidson in reply to Marossi]

Thanks Marossi. I'm glad that life is a little easier for you. x

[Jlah]

Very timely. I handed in my notice yesterday. Could not do the long hours required and stress making me ill. Now applying for ill health teachers pension. I hope I feel better to enjoy not working so my advice which I did not take for far too long is to put your health first. Take care. Jacquie x

[harleydavidson in reply to Jlah]

Thanks Jacquie. Enjoy retirement x

[AndW65]

Hi Mel, I’m 54 and work full time. I had days where I was really tired bordering on exhausted. I even woke up in the morning feeling physically tired. This was a major problem for me as I usually had some energy in the mornings but this would diminish as the afternoon went on leaving me quite tired or exhausted by the time I finished. I think my iron and hydration levels tend to effect my level of fatigue.

When my iron/ Ferritin levels were really very low I had problems making it through the day. I told my Doctor and he put me on a course iron supplements together with Hydroxy and my iron levels have slowly gone up. I now feel very much better, completely different even!, I have been having regular blood test and my Hydroxy dosage has been adjusted to meet my needs but I’ve not had to have venesections whilst on this treatment as this makes my iron levels drop leaving me back to square one. Currently I’m only on Hydroxy (5 a Day) until my HCT level drops a bit more then my dosage will either be adjusted to lower the dose or stopped altogether whilst I’m monitored to see how it goes.

Kind regards

Andy

[harleydavidson in reply to AndW65]

Thanks Andy. I’m glad it’s working for you x

[Hidden]

Hi Mel, I am great, I am passed retirement age by two years, still working almost full time shift work. I have ET so that may be different than PV and the way you feel. Love Lyn x

[harleydavidson in reply to Hidden]

Hi Lyn. That is so great to hear. Love Mel x

[Hypothyro]

Hi Mel, I’m 45 yr old male & for the past 20 years been working in emergency medicine, the shifts are 4x12 hrs days & nights, which always end up being 14 hrs due to always getting a late job. Last year I changed to bank staff & now do a maximum of 3 shifts but with a days rest in between each one & only do days. I get £5 more per hour than being nhs which is crazy, should have done this years ago. I still struggle lifting the +20 stone patients but in general less tired & more happy. Good Luck 👍

[harleydavidson in reply to Hypothyro]

That sounds much better for you. Small changes seem to help everyone. Thank you x

[Jerry01]

I didn't. After 10 years I realised that tiredness was affecting my performance at work. I was 8 years older than you and managed to retire reasonably comfortably, but it is a difficult situation. I went on Hydroxicabimide later and that relieved some of the tiredness, but it still hits in periodic eaves. It is a bit easier to retire early in Europe due to free health services.

[harleydavidson in reply to Jerry01]

Hi Jerry. Thank you and enjoy your retirement. Mel x

[jillydabrat]

Even before I was diagnosed with PV I had to give up work. I couldn’t handle the exhaustion and because I had to constantly be up and down stairs to the various offices I also succumbed to the joint pain. You have to live your life to your limitations. No shame in admitting it’s just too much. Do you have a line manager you can talk to?

[harleydavidson in reply to jillydabrat]

Hi Jilly. I work for family and find it even harder to admit to them how I feel. I am embarrassed by the fatigue and don't really think any of my family realise how bad I feel at times. when I say that I am beyond tired, they say "we all get tired" and it just makes me feel guilty so I try to get on with it. Mel x

[jillydabrat in reply to harleydavidson]

How about if you asked them to look on this site and see everybody’s stories regarding fatigue. Honestly Mel, there is nothing, and I mean NOTHING to be embarrassed about. I feel really sad that you feel you can’t talk about how you feel and how this illness is affecting you. Can you invite your family to a meal or BBQ and then ask them if they will listen to your story. Is there a family member you are more close to than others who would talk to your family with you. You can’t go on like this my lovely xx

[harleydavidson in reply to jillydabrat]

Thanks Jilly, (made me cry) just feeling sorry for myself. I will try to let them know how I feel. Love Mel x

[Stay05]

Hi Mel, my story is the same as most, fatigued to the point of exhaustion. Having to be kept in a low iron state doesn't help. However I have often wondered is it due to aging and life in general i.e. would I feel this way with out the MPN? This thought has kept me working 5 days per week and still results in me feeling tired to the bone. Now after reading everyone's comments I think may be it is due the MPN etc....but then again the alternative thought, "may be it is how everyone feels when they are in there 50's etc working 5 days per week and managing life in general. I still exercise etc (some weeks/months more than others) to help with general health and wellbeing.

[harleydavidson in reply to Stay05]

I guess the ageing process does add to the other symptoms. Mel x

[Cja1956]

Hi, Mel, I was diagnosed at age 52 with ET and PV at age 60. I am now 63. I sell health insurance and am self-employed. The fatigue is awful but I work from home and make my own hours. I used to travel to see clients but now almost everything is done electronically and on the phone. My full retirement age is 66 here in the US and I’m trying to hold on until then. You have to do what’s best for you. Let your family know how you feel. Sometimes I take a break in the middle of the day then I go back to work. Also,speak to your doctor. Maybe he can make some adjustments to your medication.

Take care. I hope things improve for you soon.

[harleydavidson in reply to Cja1956]

Hi Cja1956. Thank you for taking the time to reply. I would struggle to work from home I think, you must be very self disciplined, I'd sleep too much. Mel x

[Cja1956]

Well, I used to be a special needs teacher But I couldn’t stay on my feet all day so I had to find something I could do so I switched to insurance. I am very disciplined but due to my PV, I have slowed down a lot. Some mornings I don’t even start work till 10 and usually by three I can’t hold my head up.

[EleanorPV]

I’m also 52 in the uk. Please remember we all need different things. I’m still being paid full time. Under The Equality Act 2010 and the United Nations (UN) Convention on disability rights help to enforce, protect and promote your rights, I have had my workload and working conditions changed. This has enabled me to continue working

[harleydavidson in reply to EleanorPV]

Thank you Eleanor. Mel x

[Karol_Rua]

Hi Mel, I have ET for 18 years now and aged 44 so in no position to retire. I cut down my very busy job to 3 days a number of years ago but in recent years my energy levels are depleting at an alarming rate. I struggle with anaemia so regularly get an iron infusion since I can't take iron supplements. Financially I'm living from week to week but just can't work as I'd like. Unfortunately we're not very well supported here in Ireland as ET isn't a very well recognised condition....maybe time will change that. Best wishes, Karol

[clubdino in reply to Karol_Rua]

Oh Karol I feel your pain. I get no help in the US. I have always been very good with money and that is the only thing getting me through this difficult time as I have no financial help whatsoever. I love my 3 days of work and can't imagine returning to 5 days. It has helped me physically and mentally.

[harleydavidson in reply to Karol_Rua]

Hi Karol. Sometimes life seems unfair and ET should be recognised the same everywhere. My iron is also very low but I can’t have iron with PV so it’s a vicious circle. I’m going to try vitamin B supplements from Sunday. I will let you know if they make a difference. Mel x

[Kari1961]

Hi Mel. I'm 58 in September and I'm self-employed working 40+ hours a week. I had a stroke in 2012 and didn't find out until 2014 that PV Jak2+ was the cause of the stroke. I started my business in 2013 - After the stroke I didn't like the feeling of sitting around at home doing nothing except watching day-time TV and sleeping, and the thought of doing nothing except that until my last days was dire! I knew I had admin and tech skills so I put them to good use... Now, I work 40+ hours over a 7 day week and support my clients' whenever I am able. I make sure to schedule a 2 hour 'lunch-break' so I can rest/sleep/recharge. Thankfully my 20+ clients know me now and accept my 6/8 week hospital visits (I plan my work load around haem/venesections) and they're not 'shocked' when I arrive for our meetings using my trusty walking stick - she's an extension of me and I call her Stella.

My motivation and discipline come from the fact that I am a single woman - I have to earn money to keep the roof over my head and food in my belly, being self-employed means that I am able to choose when I work. As has been previously said by Clubdino my work helps me physically and mentally. For as long as I can I will.

[harleydavidson in reply to Kari1961]

Hi Kari . I’m impressed. I also want to work as I’d go stir crazy without and need to work as I would lose the roof over my head. I also want to feel like a valued member of society. Some times I really struggle with it though. Well done you. Mel x

[redvanman]

Hi Mel I'm 54 fairly new on here and trying to catch up on all the abbreviations. I was diagnosed with polycythaemia rubra vera (pv? ) 14 years ago . I work as a gardener .. fairly hard physical work ... I always thought my condition didn't really affect me very much at all and all of my aches and pains were just down to my age and activities. But now , having listened to others like yourself , I'm not so sure . I hope you're feeling ok today . Rikki

[harleydavidson in reply to redvanman]

Hi Rikki. Wonderful job in the spring and summer but I feel for you during the winter months. I'm behind a desk and still get tired but feel good today thank you. Stay well. Mel x