How have you had to change your life in response... - MPN Voice
How have you had to change your life in response to your MPD?
Probably like a lot of other people, I've had to listen to my body and when I am really really tired and dizzy I have to do things very slowly and explain to people around me that I am not drunk or on drugs, I just don't feel well and can't concentrate very well. It's really hard to explain to people what it feels like but most understand. I do find that when the tiredness is really bad I have to go to bed for a few hours during the day, but that doesn't happen too often, I try and get out and about and take my dog for a walk and get some fresh air, it does help. Luckily I work from home so when I don't feel too good at least I can stop working and have a cup of tea and a rest and then get going again.
I was diagnosed in November 11 after struggling at work for many months previously and then collapsing at work. I had a very demanding job and have not been able to return to work. i am very lucky as I worked for a local authority and received full pay for six months and then a full ill health pension, so financially ok. However, this does not compensate for the change in my lifestyle as I am so fatigued I am unable to live the active sporting life I used to have I have lost all of my independence as I no longer drive (I had fits and stokes early in my illness and still get light headed and due to the fatigue uncoordinated and cannot concentrate not a good combination for driving). I am struggling to come to terms with my sedentary lifestyle and although have tried to make positive changes like using an electric bike to get some independence I have some very black moments. It has been interesting to read the posts on acceptance of the illness and life change and I can see that I have a long way to go and that the process can take years. I try to take the advice of living for today but easy to say hard to do. this forum has been great as the questions asked and answered have been such a help to understand that I am not alone as like many others there is no sympathy or support form doctors or consultants we a re just another patient and it is only blood counts that matter.
Im 58 live in Manchester and I was working away from home as a surveyor during the week with a contact in Peterborough for a water company. In May 2011 I had 2 TIAs brought on by PV.
Since then i have had several venasections and have settled down to about one every three months My meds are 7 tablets a day including hydrox, asparin,and blood pressure tablets.
I have not worked since and am on ESA benifits. at present. Everybody seems to think im fit to work occupational health, my companies insurers. I am willing to work locally but my company has nothing to offer me they want me to go back my old job which involves a lot of travelling to sites etc.
I have a mortgage and Ive got the house up for sale im looking to downsize.
Ive got a final meeting at work this Friday 27, we will see what happens.
Peter
Its no joke what this condition is capable of doing, especially trying to hold down a full time job. I can really empathise with all of the above. I often wonder how long I can continue working, at the moment I have good weeks and bad weeks, it really is the fatigue thats the killer. How on earth do you fire on all cylinders with work demands, travel, decisions etc when all you want to do is crawl under the desk and go to sleep. I have recently returned from 2 weeks annual leave and I didn't really notice my condition as I just slept when I felt like it (of course lying around a pool in the sunshine, reading and swimming doesn't exactly challenge you) However, it made me realise this condition is harder to cope with if you have to work as well. Bye the way I love that we have this forum, its great.
The fatigue is the biggest problem for me. As voiced by Mallard, it can be very trying when you have to work, especially when it is your own business and suffering from the recession! It has made me decide to retire earlier than I would have - it's just the work demands when you really need to sleep! I feel luckier than most as I am not currently suffering any other pain / problems. Am on 3 x 6million units of Alpha Interferon per week, plus the usual aspirin.
I feel so sorry for all of you with these blood problems & who have to work at least with me I am retired & have my husband to help, my situation changed because now I do not go out at all except to hospital... thats because of catching any infection, with the neutraphils at 0.3 I am wide open to infection gardening is now off limits... Yes I know a lot of people would carry on as usual but I have pandered to this for the past year & against all the odds I am still here so surely I must be doing something right maybe if I was younger I would be fed up with this type of life but I have my animals, playkeyboard, read books, & a huge TV so I am content
To a degree, I fight to try and not let it intefere as I have 3 young children and a fulltime job that is fairly stressful, but at times it kind of takes over and superceeds everything..
Hi - I was diagnosed with ET over 16 years ago, and recognise that I am probably one of the luckier sufferers. However, for people who have just been diagnosed I want to give a more optimistic and positive response as I am sure I am not the only person to live a relatively unchanged life.
Originally, diagnosed when pregnant with my son - and blissfully ignorant as to the reality of my disorder until finding out a lot more about MPD's a few years ago through MPD voice. I can report that, other than my regular check-ups, a daily dose of 75 mg aspirin - that for the first 8 years there was no perceptible change whatsoever.
Then 8 years ago when I was 47 I was put on a course of Hydroxycarbamide - this was advised as my blood count was regularly over the 1000 mark.
I take 9 tablets per week - 1 per day for 5 days and 2 tablets at weekends.
I do get tired at times, have recently been through the menopause, which involved about 18 months of constant heavy bleeding (was that menopause related or because of my ET - who knows) - yes I bruise easily, have on occasion had itchy skin, pay a little more for my travel insurance - but conversely do not have to pay any prescription charges - with my Medical exemption card (do check if you haven't got one).
I am a single mum (been divorced 5 years) so have to hold down a full-time job, in an upper comprehensive. And as an Assistant Year Head am dealing on a daily basis with all the behavioural issues and problems that accompany lively teenagers - so hardly stress-free! However, I can honestly say that I live a completely normal life and hope to do so for many years to come - but do welcome the holidays that working in a school affords.
So, do take heart, it does not have to be all "gloom and doom" for everyone - xx
I also have to report that ET does not really negatively effect me physically. I was diagnosed at 16, I'm now 31 and although sometimes extremely tired I put this down to a full time job and a very active 2 year old. I think it is more that life tires me than the ET. I think phsychologically it took me a bit to get my head round it at 16, although I feel that was mainly due to the inaccurate information on the internet about prognosis, especially for a younger person diagnosed with ET. I find exercise helps and enjoying life!
I had taken partial retirement due to other health issues when I was 58years old. However just 2 years later I started getting what I thought at that time was Migrain (I had suffered with them when I was young). after a particularly bad attack whilst on duty, I visited my GP to get a prescription for Migraleve. My GP decided to look a bit deeper and sent of blood specimens. About a week later. I was due to do a night shift and was therefore sleeping during the day, my Wife woke me to say that my GP had rang to say that there was a problem with my results that necessitated my seeing her ASAP and not to do my night shift!
I saw my GP the next morning and started the initial treatment i/e Asprin and had an appointment a little while later with the Haematologist, and a lot of questions regarding my being unable to perform my duties to the same standard as previously were answered.
I tried to carry on working but I found myself becoming evermore tired and generally feeling unwell. I even negotiated a change in my contract to allow me to work more flexibly and it was not to bad for about 6 months. Then I had a preally bad period of tiredness, etc and could hardly complete my duties.
My Managers either did not understand or did not want to understand about my MPD. There was a period of quite persistent borderline harassment. This ended with me resigninig my post of some 42 years and transfering onto the Bank Staff for a while and then going into full retirement since November last year at the age of 62!
I have now started to relax and accept what has happened but feel that considering the profession that I was working in,(Nursing) there should have been a much better knowledge and understanding of my problem and how it could impact on my performance.
I hope that they empathise more readily with others in a similar situation in the future.
Hi rubyrubyruby - another good question ! I wish all this information had been available 12 years ago! I used to find that after a weeks work I would spend all weekend resting and after a while I would not be able to fully recover in a weekend. It still took me about 8 years to admit that I really needed to work less so cut down to four days, then 2 years later had to go to an even shorter working week. Luckily I was working within my family business so had a bit of flexibility. For the past 4 months I have finished work completely and am now a full time house husband - these days if I have a full day of any jobs it takes me 1 or 2 days to recover! We have just been accepted as short term foster carers for 0-5 year olds and I am looking forward to that challenge - I suppose that if I had have remained well enough to work I wouldn't have this opportunity to try Fostering. I also referee football matches at the weekend and try to keep fit as much as possible. Fortunately I know my limitations and my body and stop or slow down when I need too (though I do forget some days and suffer for it!). On the outside to people around me they see what I can do some days, and see how well I look and they don't believe or accept how terrible I might be feeling - this is something I have found especially hard to live with.
slow down, take cat naps when you need to , retire if you can and do things you like.
Sounds good to me - where can I sign up for this one ? 
How did you find out that you had PV?
does PV change life expectancy?
How frequently do you see your MPN specialist?
how did you find out that your PV was cancer?
