How long did it take to come to terms with your condition?

I heard at one of the London forums that it is believed the average time is 2 years! My GP thought I was depressed and sent me on a course of cognitive behavioural therapy (CBT).

My therapist concluded that I was angry (not depressed) at my condition. I used to pretend I never had it! I feel I am now in control and reckon it took me around 8 years to accept what was happening to me.

22 Replies

oldestnewest
  • I think it took me about 6 months to accept what had happened to me.

    That's pretty much when the hydroxycarbamide started to reduce my platelet count and I had already seen that venesections could reduce my red cell count.

    Having said that, I still get rattled each time my hydroxycarbamide dose needs to be increased.....

  • I don't think I have come to terms with my condition yet. I was diagnosed nearly 4years ago at the age of 29, I wasn't given a lot of information and was so focused on trying for a baby i didn't really take in the consequences of having ET. I got my baby and carried on taking my aspirin and was enjoying life. Then a few months ago my Consultant started talking about my diagnosis possibly changing to PV and I might start having major problems in about 20 years. It knocked the stuffing out of me for a while. What I really struggle with is the fact that this condition is affecting my decision to have another baby. I should just be thinking "can we afford another" but instead I'm thinking "am I strong enough to go through another horrific pregnancy and risk the worst happening". It's just not fair.

  • I am 6 months since diagnosis and I am no where near to coming to terms with it. I am angry that at 37 I am having to make limit what I do in order to feel ok. I am fortunate I don't have to work full-time but I have a young family and find it frustrating that I often don't feel well enough to do things with them, like long cycle rides or a day out shopping with my daughter! I also like to take my dogs for lovely long walks but now I find it increasingly hard to do this, particularly in the heat. Even after cleaning the house I need to rest afterwards. Most people my age are on the go all the time but I really have to plan my time to ensure that I don't push myself too much or I suffer the consequences, or rather my family and I suffer the consequences!

  • I was diagnosed about 4.5 months ago and I think ourlife hit it on the head with the anger. I think that's my main emotion at the moment and I'm really struggling with it. I was diagnosed 2 weeks before my wedding, and we were given 3 days to make a choice between starting Hu and feeling better but giving up on my dream of finally being able to have a baby. We were given other options but my platlet levels were so high the Hu was pitched as the best option. I know its going to take time and i try to focus on all the positive's in my life but very hard on the days when the fatigue is really bad. Finding this site is a really good release and has helped me enormously.

  • I do think the age and stage of life which you are at makes a huge difference in how long it takes to come to terms with the condition. I know if I had been diagnosed with ET at 60 I would have found it easier to come to terms with.

    I think when you are young, to be told by your consultant "I can't tell you what your prognosis is because people of your age don't usually get it but if your were between 50 and 70 the average life expectancy would be around 15 years" your immediate reaction is anger because you feel how unfair it is.

  • You say your platelets were so high that HU was the only answer mine were over 1,000 when I stated Inf. they are well controlled at 250-300 and have been for 12 years.

  • I don't let the condition define who I am! I have a 12 week old baby and an 8 year old son, I get very tired but I don't give into it. I do kickboxing and started back 6 weeks after I had my baby. The less exercise I do the more tired I feel. I don't think much about my condition but I know what warning signs to look for, myself and my husband are both nurses so we see a lot of people far worse off than me. You have to enjoy every minute of life and not dwell on what may or may not happen in the future.

  • Interesting question. I was diagnosed 7 years ago; not entirely sure when or even if I've entirely come to terms with having PV. As I approach my 50th birthday I'm just that little bit more conscious of what the consultant told me when he diagnosed PV; he said that I should live to about 70. I think my main feelings at the time were anxiety which gradually turned to a slight sense of relief as I found out more about PV and began to realise that it wasn't so terrible. I feel that I'm being well looked after and that my quality of life is virtually the same as it was. It's probably best for not to think too much about the future and concentrate on enjoying lfie day to day.

  • I was diagnosed 16 months ago with PV. I'd just had a heart attack (which was the cause - clotting) and was told three days later, just as I was leaving hospital that "oh, by the way, you've got something called PV". As I was, I believe, still in shock about the heart attack everything I was told in the hospital about the condition went straight over my head. Then I made the cardinal sin of looking it up on the internet. Big mistake as I was reading all the wrong items and the panic set in. Then I was introduced to my now haematologist who along with her team have been quite brilliant and supportive. I guess it's taken about 10-12 months to accept what I have. Now ? I'm with Dodders and Murphy, I really don't think too much about the future and live day to day. I'm living my life as I was before though I'm conscious of diet (everything in moderation) and of course, keep taking the tablets ;)

  • I had a definate diagnosis in Aug 2011 although we were doing tests from June 2011. To be honest looking back I think I have had ET since the mid 1990's, and have been experiencing symptoms on and off during this time. (often wonder what I was doing right when I didn't experience symptoms) Anyway to be honest it was a relief to put a name to all those symptoms because over the years I have experienced bouts of fatigue that I knew wasn't the same as other people experienced, and I used to try every vitamin under the sun to see if it was a deficiency of some sort. I don't like having ET but I am grateful for the meds, because they have made me feel normal. The fatigue is still a problem and if I could just erradicate that I would be tip top. I would love early retirement as working full time is really really hard and some days it can be overfacing when I am so tired, but I just couldn't afford to give up work until my mortgage is paid off.

  • Hello Mallard. I am replying to your comments as I find it has a lot in common with mine. I don't know if you are male or female but I am a female who like yourself feels that my condition dates back to the early nineties at least as I have always felt less able stamina-wise as my peers. Also like you, because of the debilitating fatigue when I did not have a diagnosis, I tried dosing myself up with vitamins. This was really bad as included was vitamin B12 and iron which is anathema to our condition as it is food for red blood cells, so I was making myself worse instead of better. I must have been much older than you when I finally got a diagnosis as I was 62 and I do think it must be easier to come to terms with it at that age as you can rest when you have to. I still have bouts of debilitating illness but the medicines I take have made me lots better most of the time and when I feel well I find it hard to reconcile myself with my illness. I feel then I could take on the world. I keep red meat to an absolute minimum, wine to an absolute minimum and not too many dark green leafy vegetables. Oodles of fresh water. This seems to work for me but I suppose everyone is different. I have had my diagnosis for 8 months now and came to terms with in almost immediately because I was so relieved to feel that something was going to be done to make me feel better. I tend to think about it a bit like diabetes. It cannot be cured but can be controlled and a more or less normal life can be lived. Also there are some exciting trials going on currently to find some better medicine than chemotherapy to treat it.

  • Hi Ourlife - I agree its a difficult question to answer as for me it seems to fluctuate between being entirely chilled about it to points of utter frustration bordering on anger because of the physical limitations the Myelofibrosis has caused me. its the little things like our 4year old grandaughter wanting me to pick her up or swing her around and i cant do it, or if she runs into the bedroom to playfully jump on me to wake up and my wife has to remind her not to land on my abdomen because of my 'poorly tummy' -my spleen is very enlarged. And like most the fatigue is a major issue. I still see a psychotherapistat regular intervals which i find useful as she offers practical help in positive thinking and doing. Although I talk to my lovely wife about how im feeling and she is understanding there are deeper thoughts that i dont want to burden her with or add to her worries. It works for me.

    I think generally Ive come to terms with having it but the prognosis isnt brill and I often wonder about my future so tend to live for today. Dont want to be doom and gloom coz that aint really me but you have to be realistic. I was told I would likely need a bone marrow transplant in 3-5 yrs from diagnosis which was 6 yrs last sept so im doing better than expected. I eat what and when i want and drink loads of water flavoured with hops and barley. . Cheerz All

  • Hi

    I ve had PV FOR 3 years and am 58.

    I met an old friend who's a neurologist, shortly after my diagnosis.

    He gave me a big hug and said, poor old you - don t believe everything the doctors tell you, don t believe everything you read on the internet, be your own project manager and find out all the sensible things you can (including modifying your diet and cutting out alcohol) and once you get your head round it - you ll be fine!

    Yes it did take me about 2 years but they flew by, and they weren't t miserable years but a time of research, and making the most of my life which is positive and jolly. I walk so much more, drink around 3 litres of water a day, and steer clear of caffeine and alcohol. You do get used to it by the way, and eventually realise that both are actually not doing you much good....

    By coincidence I met a very nice chap in his late sixties on the train the other day, who happened to be a retired nutritionist and was at university in Manchester with a gent called Keith Scott Mumby. He recommended I read his book DIET WISE.

    I honestly have never thought of myself as a " food crank" but hey! Nothing ventured nothing gained.

    Just google Keith Scott Mumby, he talks quite a lot of sense, isn t some American loony as you can see from his qualifications- although his book website is a bit of a hard sell - and you can order his book from Amazon.

    Worth trying I say, even if it does mean a limited detox for a bit!

    Best wishes.

  • Hi, i have read with interest everyones comments. i was diagnosed july 2011 and feel i have excepted my ET, but i have also in the same year been diagnosed with sjogren syndrome and interstitial cystitis so i must admit to some black moments usually in the middle of the night when i wake and can't get back to sleep. i am 49yrs old and before last year i was a healthy person or so i thought. i am by nature a very optimistic person so im sure i will eventually take all this in my stride. i am taking Hu 500mg daily 1000mg on sundays and 75mg Asprin i didn't have to decide what meds where right for me, my hemp just prescribed them and i just took them, but i am more aware of things now and actually reasearch any new drugs thoroughly before taking them which makes me feel more in control of my conditions.

  • I think I was feeling so ill before the diagnosed my PV and after my first venesection it felt as if they had taken a big fur coat off me that I sort of just accepted it as I felt so much better. Considering I was terrified of needles I would have gone the back the next day as I felt so good. I was chatting to my GP one day and he asked how I was coping, I said as I hadn't doneanything to cause it and there was nothing I could do to make it better I just had to accept it - he thought it was a good philosophy and so when I think why me and for the rest of my life just think back to those words, but we are all different and react in different ways!!.

  • Can someone tell me what PV & ET is please... I know mine is MF and the doctor says nothing can be done because of my age 73 but I do have a brilliant team looking after me.

    blood transfusions help me for about 10days then the symptoms kick in again.

    It took me about 9months to come to terms with it after all there is no alternative but to cope with the stress

  • Hi Wendyhelen, ET, essential thrombocythaemia is when you have too many platelets in your blood, platelets help the blood to clot. PV, polycythaemia vera is where you have too many red cells which are the cells that contain haemoglobin which carries oxygen from the lungs to the rest of the body. You can read more about the different MPDs on our website at mpdvoice.org.uk/about-mpds/...

  • I was diagnosed with ET in 2003 aged 44, it was quite a shock but my lovely haematologist told me I would lead a fairly normal and long life. I was really scared and there wasn't much information available about MPDs, even the doctors I worked for didn't know much about it so that didn't help my panic. It wasn't until I got involved with MPD Voice in 2009 that I learnt more about my condition, and although I have come to terms with it and taking Hydroxycarbamide, I still sometimes get angry and upset and think, why me, but then I think about people who have much worse illnesses than mine, at least I have all my faculties and I can walk, talk, see, hear etc, but there are times when I get down about it and want some sympathy, luckily I have a very supportive partner in Pete and an amazing sister who are there for me when I need cheering up. I also find that being part of the MPD Voice community and attending forums has made me realize that I am not alone in how I feel and the people I meet and talk to via email and now this community make me feel better and inspire me, so thank you to all of you.

  • I am not sure that I have yet! I was told I had ET 13 years ago and they were just words that I couldn't pronounce and was monitored taking asprin for 10 years before I had a stroke at 38 years old then the tablets started. Still do not see ET as being anything other than a label and that the majority of the time I am healthy and lucky to be well and lead a great life the same way that other folks are.

  • I am 59 and was diagnosed with PV 3 years ago. I came to terms with my PV diagnosis very quickly, probably because I am asymptomatic and feel in very good health. At my age, there's an element of acceptance that you can't expect to remain in 100% health forever. I have noticed quite a few contemporaries having mobility problems (knees, ips, back) and I have a cousin in very bad health and I think to myself, well, I haven't done too bad. It helps that the care has been excellent and that there seems to be a lot of medical activity/research going on that might help to alleviate symptoms as and when they appear in the years to come. the one thing that still does bug me is that the condition was only diagnosed accidentally. With the NHS emphasis on primary health care, my age and fact I was a regular blood donor for 20 years and 56 so how come I had to ask for a blood test for something else I was worried about before my doctor/me knew I was walking around with an extremely high red blood cell count that might have soon put me in danger of a stroke?

  • I took it a bit hard at first, but have always been quite fatalist in my life (what will be will be.) so just decided that the best way forward is to accept it and get on with my life. Most of the time this works for me.

  • My PRV was diagnosed 6 years ago. The big C word was scary, but after a few dark nights of the soul, I've gone on living as normally as possible. I added to my problem on Aug 9 with a heart attack, but feel quite well and am rebuilding my strength, etc. If we do the right things I think we can live for years and have a good life. I am 73 now. Abman

You may also like...