ET changed my angle to look at this world

[mustabshra]

I am still struggling to digest my diagnosis and at the same time I am feeling relieved in a weired way.Yes , I chose to not break this news to family n friends..I dont want to see myself weak or fragile in their eyes.I am certainly not weak, but this final shock of my life(hoping it is the final though😆) has changed my perspective of looking at life, of my relationship to myself and to my ultimate family and to all other living beings around me.I am feeling a strange and new compassion for animals even.Although b4 this ET thing, I already was an animal lover, I chose to become vegetarian out of my love for animals.But now the level of love is different..I am a survivor of terror attack, after getting shot and getting 7 bullets in my body, I was not that much changed internally, as much I am feeling now.Being a mother of a special need child, has not challenged me emotionally so much, as much ET did..I dont know why, but in a way I am feeling myself a more refined person now.I know that ET prognonsis is almost like normal population, but still i am feeling count down has started, and before it get finished I want to extract all the beauty and joy out of this life. I want to give all the positivity and happiness to those around me.I am writting all this here, bcz this forum is the only place where I can say about my disease anything without being judged.Thanks for all the encouragement I get from you people.

[Debborah]

mustabshra , you sound amazing, especially for someone who hs been through so much. I think the ET diagnosis affects you more because it is actually your own blood and more or less out of your control. Your positivity is wonderful.

[Rachelthepotter]

Dear Mustabshra

When I was told I had an MPN ( initially ET, then MF) I too was relieved. Which sounds odd, but at least I knew why I had the strange collection of symptoms that I did.

As to telling other people, in an ideal world, family and friends would rally round and be extra helpful and kind. My experience was that some did, and some didn't. Some people went out of their way to help me, emotionally and practically, but some of my closest friends and family just pretended nothing was happening, or I was making a fuss over nothing , or just dropped out of my life.

Once you’ve told people you can’t un-tell them, so it is absolutely up to you who you tell and what you say. Keep on touch.

All love

Rachel

[Jellybean129]

Hi mustabshra

You have gone through so much and I can understand your ET diagnosis must have been a shock. It certainly was for me.

I have an odd collection of animals (horse, 1 sheep, dogs, cat) and find them such therapy. They know how I am feeling and don’t judge. If I am feeling out of sorts a session with Summer, my horse, always makes me feel a whole lot better - she enjoys the scratching and brushing and in turn I get that peace from her which no human could give. I think I’d go mad if I didn’t have my motley collection of furry friends around me!

I do believe a change in our lives as great as a diagnosis like we have had does make us stop and assess what we want out of life. I for one feel lucky that my ET diagnosis came before any serious health problems and I can now take charge of my future - eating well, accepting change and, above all, being grateful for what I have around me.

It is your choice whether you tell your friends and family - only you can make that decision. I have told my husband, 3 (adult) children and two brothers as they all know I have struggled over the last few years and felt that if they knew what I have they will be able to understand that sometimes I’m not going to be that ball of energy I used to be.

This forum is a wonderful place for support and information so keep posting. You are not alone.

All the best to you, and keep seeing the beauty in the world. There is a lot of it out there if you look. I spent ages watching a dung beetle in the horse’s field the other day - amazing little creature!

Gill x

[stillkicking]

Thank you for your thoughtful post about ET. I read your words not long after you put them here 6 days ago, and wanted to comment at the time, but couldn't quite think of how to reply. I'm still not sure how to say what I want to, but I will try!

Two years ago my wife was ill for many months and nearly died after her intestine perforated. She is OK now, I am happy to say, but at the worst time of all, when she was in hospital and was so weak and fragile, I remember how she still cared about the other people in her ward, and tried to help them when she could. It seemed like almost all of her had been taken away by the illness, but what was left was her goodness. Her true self. This is probably quite a rare thing, as suffering can so often make us angry or frightened and we can turn "inwards" trying to protect ourselves. Also, most of us keep who we are a bit hidden. People can look OK if they dress well and make polite conversation, but can be really difficult when suffering takes away the glossy exterior! Your comment about being "a more refined person now", and your desire to give all the "positivity and happiness to those around", after all that has happened to you in your life is just such a special and lovely thing, and really does say about the wonderful person you are!

Regarding telling friends and family about having ET. It is a personal decision, and some people tell every one and some do not. I did keep it mostly to myself at first. I thought I would "protect" my elderly parents by not telling them. I did have to tell them a few weeks after the diagnosis, because I was often so tired that I could not manage the one hour drive to see them very often, and sometimes had to cancel a visit at the last minute. It was more worrying and hurtful for them not to know! When I did tell them, my mother said, "I thought so.... I've realised something was wrong for quite some time!" And it was much easier to talk to them then I thought it would be. I also told a few close friends, partly because it made it easier for my wife to get the support she needed from them, but also because I really needed to tell someone! Now that I have lived with this diagnosis for much of this year, I am much more open about the ET.

I think it is hard for others to understand this condition because we can look quite well, and probably the people that we tell will quickly get used to it, and forget that we even have it! For myself I do find that it feels better being honest with friends about the ET, and it may even improve the friendship.

Very Kind Thoughts,

Peter

[mustabshra]

hi everyone ..Thanks for liking my post and thanks for great words..offcourse we all feel more or less in a similar way bcz we all are in a same boat..My eyes are literally wet while reading your comments.I can feel all of you are very positive people, and I am wodering also, why most of the time good spirits go through most difficult times..I read somewhere and it touched my deeply , “its ur choice either u wana die while living or wana live while dying”..I know all of us here, chose to die while living our life to fullest..suffering made us strong not weak..we are able to appreciate the beauty better than anyone else may be bcz we are not taking it for granted.

I am glad that u guys are able to read between lines, the way you decoded my emotions is awesome..You know I am on other part of planet, but still feel deep.connection to you ..