so tired!

[Jennie_Barnes]

I'm sat in work at the moment struggling to keep my eyes open because I'm so tired! Has anyone had this conversation with a boss at work, they don't question if you need to go home because your ill with a cold or sick bug. But I'm a little worried to go up to them and say please can I go home because I feel too sleepy to work!

[westlieght]

Hi jennie you have not said what MPD you have but fatigue is always mentioned in the blogs .if you have an understanding boss have a talk explain how you are feeling ,it,s important to rest lunch times to help you through untill home.

[Jennie_Barnes]

Hi sorry,

I have ET, I know fatigue is something that a lot of people suffer from, I just wondered if anyone had encountered this problem with work. I work in recruitment which is very stressful and not a very understanding environment and my standard contracted hours are 8-6.30 mon -fri although it's very rare that I leave before 7.30 most days.

It is expected upon that you drag yourself into work no matter how ill you are and then they can make the judgement as to whether or not you are 'ill enough' to take a day off, I'm worried I will be laughed at for saying I'm too tired, when colleagues come in even when they have flu etc...

Thanks

Jen

[Mazcd Partner MPNVoice]

Hi Jennie, this is a massive problem when you have a MPD, that most of the time we look fairly well, and it can be very difficult to explain to people that actually, it's a real struggle some days to cope with the tiredness and the fatigue, and everyday simple tasks can take a lot of effort and willpower to do them. As westlieght says above, you need to explain to your boss and your colleagues about your MPD and how it impacts on your daily life, hopefully they will be kind and understanding about it and let you go home when you feel you need to, or even just take a rest for 10/15 minutes every now and again.

[ETphonehome]

Jennie / all, Have you read this ?

mpninfo.org/pdfs/QualityOfL...

[Jennie_Barnes in reply to ETphonehome]

yes thanks I read it when you posted it up, I'm contemplating printing it off and throwing a copy at my boss and running off home to go to bed! Ha

cheers

Jennie

[Jo_L]

I have recently got a new manager and emailed her a link to MPD Voice. I explained that I have PV and ET and told her what treatments I'm having. I am contracted to work 37 hours per week and, even though I work at a fairly senior level in the Civil Service I am never pressured to work in excess of those hours.

I think that this is, at least in part, because these conditions are classified as cancers and are therefore automatically covered by the DDA. I recognise that you may not wish to make that point to your employer but wouldn't it be better for you to agree some adjustments now rather than pushing yourself too hard and increasing the risk that you have to take significant amounts of sick leave in the future?

I hope I've been of some help,

Jo x

[Jennie_Barnes in reply to Jo_L]

Hi Jo,

Thanks for that, I didnt actually no anything about the DDA and what was in place for people with Cancer. Sounds silly seeing as I work in recruitment! How I long to work 37 hours! I think I'm in the wrong industry I'm contracted 50 hours a week

I've only been in my new job for 4 months so I was a little worried at how they would take it. But thanks for all your advice

Jennie

[Hidden]

Hi Jenny

I can so relate to your situation at work, I too suffer from the dreaded 'fatigue' from time to time. (used to be constant before I started on Hu). I work in a busy corporate dept of the NHS and its no joke when I am struggling with tiredness. Some days I could just cry with the effort it takes, I dream of being able to give up work or winning the lottery but hey ho I have a mortgage therefore, 'golden handcuffs'. I have ET diagnosed in 2011. Hi Jo wasn't aware of DDA do you have a link, I would be very grateful?

[piggie50]

Jo L What is DDA

[Jennie_Barnes]

HI you might find this link useful DDA is disability discrimination act

cancerhelp.cancerresearchuk...

[Gallery123]

DDA is disability discrimination Act, yes very good advice, the need for reasonable adjustment. If your employer is not sympathetic I would consider an occ health referral so it is officially spelt out to the boss. I was lucky I took redundancy which gave me early retirement. I am thinking about further work but only part time, I am 56.

[baggies]

iam not sure if polycthemia vera comes under disability discrimination act

[KevinJH in reply to baggies]

Someone else may be able to enlighten on this as I've been to two OH specialists and they stressed the word 'may' when it comes to being covered under the DDA. By their own admission however, they were not specialists in MPD's. (Good referall's, eh ? To be seen by someone who's not clued up on your 'condition'..... I digress).

However, my work colleagues are sympathetic to my 'condition' and help where they can but like Jennie originally stated, I too get very tired towards the end of the day and working the horrid shift pattern that I have to does grind one down. Ironically though, by doing this shift pattern enables me NOT to work the 13 hour plus days that my colleagues have to do - I hover around the 9 hour mark which is quite enough.....

[Aime]

I have PV but have been very lucky with my boss who has allowed me time off if I have felt I couldn't go on. I have now asked for a referral to occupational health because, although I have never taken advantage of this kindness, I feel guilty at going home early. Some days, like you all, I have felt so tired that I could hardly move! Hopefully the doc at occcupational health will advise and agree on less hours - I work 36.25 a week. I have found that because the arrangement to go home has not been official, I tend to push myself to stay until past the point of no return - feeling really sick and so fatigued! I think it will be better to get hours reduced officially. I have wondered about early retirement - I am 55! Aime

[tarifa]

Don't assume that because you have an MPN that you might not have something else. I have ET, but subsequently have been diagnosed with diabetes and hypothyroidism, both of which can cause fatigue. Some of our meds lower the red blood cell count and hgb as well, so it might be a good idea to ensure you're not anaemic or even borderline. Finally the nights drawing in, our lousy weather and simple boredom can make anyone feel tired. We have a duty to ourselves to stay as healthy as possible to enable us to live our lives to the full, so it may be that less hours somewhere else might suit you better, but I know these dare difficult times employmentwise.

[LouisePRV Volunteer]

Hi,

Do you get up really early to an alarm clock? If you do, have you thought of asking if you can start later?

A relaxed start to the day helps me enormously.

[Jennie_Barnes]

I'd love to do that I get up at 6.30am and am in the office for 7.30am and don't leave till 6.30pm at the earliest, I think I need to work less but when you have bills to pay its hard work