Stay positive and try not to become too anxious

[amarylis]

I was diagnosed with ET over 16 years ago whilst pregnant. I was told very little about the illness, as I believe not a huge amount was known back then, except that it was rare in someone of my age - I was 37. I regarded it as symptom-less at the time and was happy to take the daily 75 mg aspirin that was recommended and have my blood tested every so many weeks, later stretching out to months. Ignorance, in a way was bliss, my consultant didn't say anything alarming and therefore I was not alarmed.

I moved up to the Leicester area in 2001 a BMB was carried out by my new consultant, but again I was not given any new information and as I was still not feeling any ill effects I continued to take the aspirin. My blood count remained just under the 1000 mark but after it remained consistently above this count, the consultant suggested I started on Hydroxycarbamide - which I have been taking for over 7 years (maybe more).

A few years ago I discovered the MPD Site, and suddenly I became more acutely aware of what I actually had and for the first time I became alarmed and anxious! Don't get me wrong I was delighted to find out exactly what I had but what I am saying is sometimes we can get ourselves very worked up unnecessarily. Once I had digested the facts recognised that there appeared to be varying degrees of the illness - that there were a number of people who had been living with the disorder for years - on both sides of the Atlantic (and beyond!) and that a huge amount more had been discovered about the disease in recent years and that probably there would soon be a cure - my anxiety subsided.

I have due to various fairly major life changes (a traumatic Divorce and two tragic deaths of close family members) undergone a lot of stress over the years, but my ET has remained fairly constant.

I do get very tired at times, though not constantly,I bruise fairly easily, but then so do other friends of mine without ET - I have had itchy skin, although not presently, occasionally I get palpitations, but as someone who has now been through the menopause - I sometimes question whether symptoms that I get are to do with my ET or are just simply because I am getting older. I am thrilled that we have sites such as these for us to share experiences but I really do want to reassure people, particularly those who have just been diagnosed with ET not to get too anxious (easier said than done I know). Because although I would much prefer not to have been diagnosed with ET, it really does not necessarily have to impact too heavily on your life. I have lived a perfectly normal life, with all its ups and downs and hopefully will continue to do so into a healthy old age.

I do recognise that there are others far less fortunate than I, but I thank God that my condition was diagnosed when it was - as the outcome could have been far worse if it had not.

Staying positive, keeping abreast of the rapid advances that are being made and sharing experiences are the best things that we can do - so God Bless and all the best to you all

[StreetPastor]

Great blog, thanks Xx

[amarylis in reply to StreetPastor]

Hope its reassured you a little, never good to be diagnosed with a chronic disorder, certainly not a walk in the park, but not as scary as perhaps it may have seemed at first By the way have huge admiration for Street Pastors - Bless you! xx

[StreetPastor in reply to amarylis]

Thanks, I had to take a break for a while due to being off work & getting platelet count down etc........, My uniform is still hanging up in my room and I know I'm not happy to hand it back, so watch this space. It's so much fun, and come to think of it comes under the title of gentle exercise!

[Bromley]

You are so right and level headed. I was diagnosed five years ago at the age of 62. It was frightening and for a few weeks I could only focus on the negatives when reading. I then realised that there were many far worse chronic diseases and although it s good to be informed, sometimes we can become inward thinking and this is not good. The MPD site and the meetings are excellent and I have enjoyed meeting others with ET and the Jack Positive but one has to keep things in perspective.

Perhaps I am lucky but I stay active, walk regularly and enjoy my family. I do get tired but many people of my age do. It is easy to blame everything onto MPD. A positive attitude is the best, I do have down days but then we all do especially this "summer.".

Your reply should be read by everyone.

Enjoy life and rest when needed. X

[amarylis]

Hi Bromley, Thank you for your nice comments. I do recognise that we are all different and have varying degrees of the condition. We wouldn't be human if we didn't focus on the negatives from time to time, but if we keep active, eat well and are fortunate enough to have a supportive friends and family network, then as I said earlier there is no reason why we shouldn't live full, active and meaningful lives - bless you xx