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Old 07-04-18, 05:40 AM   #1
Dolphin
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Join Date: May 2008
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Default Love love love

Hi everyone

Some of you with good memories will remember how I found love after I tested at Leuven and threw in my job and came back to the UK.

This love (like most other loves) was incredibly all encompassing and gave us both strength and delight.

We were firmly convinced that we were steaming into rainbow land

It is now almost 11 years I have been living with the knowledge I will get ill.

So somewhen in the last six months things have gone really badly wrong.

He has lost his dad - my step children are really on the cusp of adulthood - his mum is not well - he found other people to confide in.

Also I just woke up the other day to the amazing strength that this rainbow journey will need. I haven't been sure that he could do it. Well he has left.

So I post on here and mostly I try to be calm and considered in what I post. The reality of living with me is I like to feel an equal and he has been casting me in the role of a child. Other salient facts - I have a temper and I hate living with deceit. The reason to test was to face the truth fair and square.

So the fact that he hasn't confided in his family about HD is a big slap in the face. The fact that he cannot face me being angry and doesn't want to talk about things doesn't bode well for the future. He could have come along to the Support Group meetings and been in much more of a position to know is this onset or just something else.

I feel mad and sad but mostly at the moment relief that now his family knows. But given I told them - I think there isn't a way back to the rainbow bridge.

I have been so touched by their reaction - I knew they would find it in them to try to understand. Also so touched by my family too - who have all done juggling acts with their lives to make sure I am well supported through this.

Expect I will be back with an update soon


Dolphin
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Old 07-04-18, 11:17 PM   #2
jaq
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Default Re: Love love love

Hi

So sorry to read this .

Youíre posts have always been calm and considerate and you have clearly had this attitude in your daily life and been open and honest .

What is it about this disease that instead of making people rally and support it seems to divide .

Glad your family support is solid

Sending love love and a little more love xxx
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Old 09-04-18, 06:59 PM   #3
Trish
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Default Re: Love love love

Quote:
Originally Posted by Dolphin View Post
Hi everyone

Some of you with good memories will remember how I found love after I tested at Leuven and threw in my job and came back to the UK.

This love (like most other loves) was incredibly all encompassing and gave us both strength and delight.

We were firmly convinced that we were steaming into rainbow land

It is now almost 11 years I have been living with the knowledge I will get ill.

So somewhen in the last six months things have gone really badly wrong.

He has lost his dad - my step children are really on the cusp of adulthood - his mum is not well - he found other people to confide in.

Also I just woke up the other day to the amazing strength that this rainbow journey will need. I haven't been sure that he could do it. Well he has left.

So I post on here and mostly I try to be calm and considered in what I post. The reality of living with me is I like to feel an equal and he has been casting me in the role of a child. Other salient facts - I have a temper and I hate living with deceit. The reason to test was to face the truth fair and square.

So the fact that he hasn't confided in his family about HD is a big slap in the face. The fact that he cannot face me being angry and doesn't want to talk about things doesn't bode well for the future. He could have come along to the Support Group meetings and been in much more of a position to know is this onset or just something else.

I feel mad and sad but mostly at the moment relief that now his family knows. But given I told them - I think there isn't a way back to the rainbow bridge.

I have been so touched by their reaction - I knew they would find it in them to try to understand. Also so touched by my family too - who have all done juggling acts with their lives to make sure I am well supported through this.

Expect I will be back with an update soon


Dolphin
Oh Dolphin

I am so sorry to hear things have broken down.

Sending hugs (((HUGS)))
__________________
I tried.
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Old 11-04-18, 07:28 AM   #4
banda
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Default Re: Love love love

So sorry....hoping you are coping better as each day passes. xx
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Old 12-04-18, 12:24 PM   #5
Gabby
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Default Re: Love love love

Quote:
Originally Posted by Dolphin View Post
Hi everyone

Some of you with good memories will remember how I found love after I tested at Leuven and threw in my job and came back to the UK.

This love (like most other loves) was incredibly all encompassing and gave us both strength and delight.

We were firmly convinced that we were steaming into rainbow land

It is now almost 11 years I have been living with the knowledge I will get ill.

So somewhen in the last six months things have gone really badly wrong.

He has lost his dad - my step children are really on the cusp of adulthood - his mum is not well - he found other people to confide in.

Also I just woke up the other day to the amazing strength that this rainbow journey will need. I haven't been sure that he could do it. Well he has left.

So I post on here and mostly I try to be calm and considered in what I post. The reality of living with me is I like to feel an equal and he has been casting me in the role of a child. Other salient facts - I have a temper and I hate living with deceit. The reason to test was to face the truth fair and square.

So the fact that he hasn't confided in his family about HD is a big slap in the face. The fact that he cannot face me being angry and doesn't want to talk about things doesn't bode well for the future. He could have come along to the Support Group meetings and been in much more of a position to know is this onset or just something else.

I feel mad and sad but mostly at the moment relief that now his family knows. But given I told them - I think there isn't a way back to the rainbow bridge.

I have been so touched by their reaction - I knew they would find it in them to try to understand. Also so touched by my family too - who have all done juggling acts with their lives to make sure I am well supported through this.

Expect I will be back with an update soon


Dolphin
So sorry Dolphin , all relationships are hard and lots of other Life events get in the way and break down a relationship .. with the added HD in the background or foreground .. It makes it all the harder . I am on my 2nd marrigae first broke down nothing to do with HD after 13 years and 3 children it was difficult and i was left feeling rubbish we blame ourselves but now ..my 2nd is to a wonderful man who has HD .. We have had some fab times ( 14 years together) but things are changing and i worry everyday am I going to be able to cope am I going to be able to care for him .. so difficult I love him yes but that's not always enough !!.You sound a very sensible and calm person hope this does not effect you any more than possible and you can build your self esteem back up . take care and much Love to you
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Old 13-04-18, 12:18 AM   #6
Cupcake
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Default Re: Love love love

Dear Dolphin

I am very sad to read the love of your life has left.

Itís hard being with someone with HD, and the mood swings, and equally hard for you, as you canít control that. There seems to have been a lot going on in the last 6 months and maybe the grief of losing his dad and his mum being poorly has affected his judgement or totally overwhelmed him that he feels he canít cope with the future with you at the moment. Children as they become teenagers are very challenging too. Maybe he was afraid to upset you with all his emotions I donít know, but I can understand you feeling like you want to be treated as an equal.

Keep strong, and if the love you share and is strong enough, there could be still a way back, sometimes we need time to think things through, there were times I felt totally overwhelmed with hubby, but my love for him kept me there by his side. At least itís all out in the open, and maybe that too will help you allcome together as one. Try and keep positive, one step at a time each day, try not to let too much anger buildup and destroy that cherished love you had, and delete all those wonderful times and memories you have - there maybe some way back to rainbow 🌈 land.

Sending hugs - take care xx
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Old 13-04-18, 08:44 PM   #7
Dolphin
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Default Re: Love love love

Hi

Thank you all everybody for your really kind and uplifting messages

I am still getting lots of touching messages from both sides of the family. Whatever the outcome I feel it has brought us more understanding and closer together whatever happens next. I think I just have to face up to the truth that being with someone with HD requires such a huge amount of compassion and understanding and patience and nursing skills and a very good sense of humour - that my wishlist for a partner is a bit stretched ! It is really about this age that my mum onset - so I am more anxious than normal.

The shock has worn off and I think I need to begin grieving. But I also think that we both need to be true to ourselves. I feel I have sublimated the real me in all this for some time.

Any way I am getting some counselling to help and it was really good to touch base with the HDA again - I am going to make a much more determined effort to stay in touch with people that understand HD.

So a big thank you once again and courage to everyone

Dolphin
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Old 14-04-18, 11:56 PM   #8
Cupcake
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Default Re: Love love love

Quote:
Originally Posted by Dolphin View Post
Hi

Thank you all everybody for your really kind and uplifting messages

I am still getting lots of touching messages from both sides of the family. Whatever the outcome I feel it has brought us more understanding and closer together whatever happens next. I think I just have to face up to the truth that being with someone with HD requires such a huge amount of compassion and understanding and patience and nursing skills and a very good sense of humour - that my wishlist for a partner is a bit stretched ! It is really about this age that my mum onset - so I am more anxious than normal.

The shock has worn off and I think I need to begin grieving. But I also think that we both need to be true to ourselves. I feel I have sublimated the real me in all this for some time.

Any way I am getting some counselling to help and it was really good to touch base with the HDA again - I am going to make a much more determined effort to stay in touch with people that understand HD.

So a big thank you once again and courage to everyone

Dolphin
Keep smiling and keep strong lovely 🙂x
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