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DH
14-05-08, 09:25 AM
Strange, isn't it? I'm sure many of you are now fairly familiar with my take on life, always look on the bright side, glass half full, etc, etc.

So why do I feel the way I do now? London_ben has had some superb news and I should be feeling really pleased for him, saying well done, good luck and all that sort of thing. But I can't. I feel really p!ssed off at the moment, really shite. My first reaction was "you lucky bugga - why wasn't that me?" - not "that's great news, I'm really pleased for you."

I don't know whether I'm being selfish or honest in writing this down; I don't even know whether I should post this or not.

I suppose it just shows how your entire life can change with just a few simple words that take a second or two to say.

I've known that I am HD+ for over a year now and I thought I was dealing with it ok; at least, that's the persona I try to project. The way I feel at the moment just shows that I not dealing with it at all. Just burying it under layers of fluff and frills.

Oh well.

katiepie
14-05-08, 10:13 AM
DH,

Your coping as best as your able, and your feelings are what they are. I'm so sorry you have tested positive. It's really difficult knowing what to say to people with a different test result at times. Of course you are happy for London Ben, and I know you are maintaining a positive out look on life in general. But life brings unexpected knocks and you have had one. Let yourself feel crummy and then bounce back once you have given yourself time to be emotional. Sometimes i'm sorry I had my negative result because of the problems it causes between my positive siblings and myself.
At the end of the day you are right, life is not worth throwing away on feeling self pity, so do as I do when I feel really down. Wallow in it for a while but then dust yourself down, tell yourself you are wonderful and can cope and start again.

I shall send some hugs and my best wishes. XX

Kath

frankie
14-05-08, 10:55 AM
Hi Dave,

I would say your reaction is perfectly natural, how can it be selfish? No one is going to be happy with a positive result and you must think how lucky someone is when they get a negative result and wonder how they must feel ? That would have been the best feeling in the world for you. I think all who test are very brave and I think most people expect to get a bad result,its human nature.

It questions the whole testing debate and is it better to live in ignorance or to know? Your life does change in a matter of seconds if you get a positive result ,and there is no going back, but knowledge is power Dave, even when its bad news. You can live your life to the full , you can plan for the future and you can make some "positive" changes to your life. So many of us live lives in a half hearted way and will have many regrets , we could all do with a wake up call.
I think it is very sad for people who have chosen not to test who become symptomatic.Its almost like a double whammy, the fear of the unknown and then it does happen. And how sad for those where there has been no family history ,or they were adopted and they become symptomatic. They never had the option to test.

I always think its useful to read the legacy left by Jerry Lampson on the HDlighthouse site , his HD triad. His words "that life even without HD is terminal,in our 30's our bodies are well into a course of many degenerative changes that will bring certain death". He is talking about all of us not just people with the HD defective gene.And he said ," besides that you have a large degree of control if you have a plan based on all the best available information."
There are cases of twins with the same CAG repeats where one twin with a healthier lifestyle , full of exercise and a good diet is still well and symptom free while the other who has gone into a depressed decline has become symptomatic. Those who get a negative result are very lucky and they will have experienced the fear and dread of expecting a bad result, and I think it changes the lives of all. Hopefully for the better, to realise that life isnt a rehearsal, we only get one chance and to make the most and the best of what we have got.

You do have a great attitude Dave and its never going to be easy. I think you are dealing with it and there will be ups and downs. How can anyone just accept it? You don't seem to be burying it at all or you wouldn't be here on this site .It is always a pleasure to read your posts and remember we are all human beings with the same emotions and feelings and fears.We are all in this together one way or another and you are not alone.

Take care

myrna
14-05-08, 11:07 AM
Hi Dave,

I so appreciate your honesty. When I posted my message to LBen, it did cross my mind that those of you with positve test results may have other feelings about reading a negative result. I know for sure that I would. Its human nature to....just like if a friend won the lottery. It would be hard not to feel a little or even a lot jealous that it wasn't me. Even though you maybe really happy for them too....or maybe not!
I don't think it makes you selfish at all. It makes you normal. Many of us would feel the way you do, just as many of us would feel the opposite to the other result. I would allow your self to feel sh**ty today or for as long as you need to. It's about working through your own feelings, getting a balance & then continuing the positive fight in the way that you do....wonderfully!!!
I think you being you Dave & the very happy outgoing person that you are, your positive attitude will soon kick back in because you know deep down that it's just the way of the HD world that some people will get good news & some won't. You have done so well up to now & I believe that you will continue to do so.

This board is here to discuss all aspects of HD & I am pleased that you could post about such honest feelings. It's important to share the good & the not so good, so thank you for doing so.
We are all here for you so have a damn good moan if you want & get it out.

Thinking of you.
Myrna xx

just1moreperson
14-05-08, 12:41 PM
When I first decided I was going to get tested I came on here looking for people who had been through the testing expierence. I found alot of people who had, but virtually all of them had a negative result. It's alot easier to come back and tell everyone your ok! The fact you are here giving people an insight into getting the positive result is a huge help to people like me.

lucyloo
14-05-08, 01:44 PM
Dh,
It is completely understandable, because its not fair.
As Matt said, your postings from an Hd positive perspective are a great help to all of us who are thinking about testing, we need to hear first hand experiences from people like you who have tested positive.
Let yourself be angry and mad! When my dad died I was livid with every old person still walking around, because I thought why them and not him.
Take care of yourself hun
Love Lucy

angelad
14-05-08, 05:06 PM
Dave
I totally agree with lucy.I look at people now who dont give a s*** about life,druggies all the other wasters out there and think why have we a life sentence over our heads.You have a right to feel rubbish your braver than me i darnt get tested.We all have bad days think i invented them but your allowed to.Awake tomm and go and grab life with both hands and enjoy it
Angela
xxx

frankie
14-05-08, 05:50 PM
Lucy,

You are right it is not fair. Its not the fact that someone has tested negative but unfair that someone should test positive. I will never accept it and its that anger that encourages me to try and search for answers. I will admit that I have felt an almost dislike for distant family members who seem to have "escaped". Again its human nature to protect our own and those close to us. It seems to bring out the bad side to my character and I do feel ashamed but I would sell my soul to the devil if I could change things.

poppysox
15-05-08, 09:02 AM
Hi Dave

You have been totally honest about your feelings and I cant add anything to what the others have already posted to you. I think having s**t days is human nature, and you have described it very well. I do hope you have a better day today though and it's good to hear negative thoughts as well as positive ones.

thanks for sharing it with us

DH
15-05-08, 05:12 PM
Well, thanks for all the hugs and kisses :smile: (Not sure about the pork scratchings...:tongue: )

Still kinda up and down; this is the longest episode of melancholy I've had since, oooh, the last one... :rolleyes:

Seriously though, it's just a couple of days - by the end of the week I'm sure I'll be back to normal (whatever that is).

Frankie has touched on an interesting aspect to do with families. My sister has recently started to look at the possibility of getting herself tested which will obviously throw up all sorts of emotions. If she's HD+ I'm obviously going to be upset/annoyed/concerned all at the same time, but for her. But if she's negative? I'm going to be upset/annoyed/concerned for myself. Still, I guess I'll cross that bridge when I get to it. For the moment I think it's enough dealing with it in myself and my mum (who is still in the testing phase - and she doesn't know about my diagnosis yet). I'll worry about it in others later. It's surprising how long this process of getting used to being HD+ is taking. My reaction over the past couple of days has confirmed that for me it's longer than I though it'd be.

I wasn't sure whether or not to make the initial post. My reaction seemed such a selfish one that it seemed wrong to post. However, if being honest with myself and then posting it is appreciated by others I'll carry on.

Normal chirpy service will be resumed shortly. :rolleyes:

poppysox
15-05-08, 06:03 PM
Dave
you dont owe anybody any apology for your postings you are just stating the truth and i think it matters to get it off your chest.

I know if your sister tested neg. you would be delighted for her.
You keep posting!!! I for one appreciate your honesty

Frankie's post was very good ..I liked it too
take care Dave

Toni
16-05-08, 08:08 AM
Hi Dave,

I totally agree with what everyone else has said. You are not being selfish at all, and definitley do not need to apologise for having a bad time and sharing it with us. Its never wrong to be honest about how you feel. Thats why this board is here, so we can all share our experiences and help others, which is exactly what you are doing.

I know my mum felt the same as you when I tested negative just after she was diagnosed.

I hope you feel better soon.

Toni x

Elsa
16-05-08, 05:54 PM
Hi DH,

hope you are on the way to resuming chirpiness. I feel really bad about asking you questions and please tell me to go away if they are too much but as the only person I know to have tested positive I dont know who else to ask.

Do you regret having the test? I suppose I am asking whether the not knowing was any better than knowing you carry the gene? I would like to think that if I tested positive I would take up exercise, eat well, take part in all the drug trials going and get less stressed about little things but the reality is more likely to involve resorting to alcohol, spending money recklessly and living under my duvet as a means of coping!


Hope this is not too intrusive and would appreciate hearing any feedback you can give.

Best wishes, Elsax

DH
16-05-08, 06:10 PM
more likely to involve resorting to alcohol, spending money recklessly and living under my duvet as a means of coping!

And what's wrong with that? :D

No I don't regret having the test for a moment. I'm one of these control freak types (in other words a typical bloke) that needs to know what's going on.

I do eat better now since the test although I ate pretty well beforehand. Also, since having the test I've started to do things that I wanted to do but kept putting off. I've had my eyes lasered, been away with my daughter more often, taken up kayaking, ridden my bike to Morocco, etc. I try to be more relaxed and not let life wind me up too much (don't always succeed though!).

For me, knowing is better.

As for the chirpyness... well I'm off to the pub in a mo so I should be back to full chirpness soon. :smile:
Not sure that I'll be so full of beans tomorrow morning when I'm struggling to get in my kayak with a thick head though... still a few dunkings in the lake should see me right. :rolleyes:

Fell free to fire away with whatever you want to ask; I can normally come up with an opinion or two. :D

Elsa
17-05-08, 05:42 PM
Hi Dave,

how was kayaking this morning (and how was the head?). Thanks for your reply to my questions - how old is your daughter? Spending time with our kids is very important, shame it takes something like illness to make us appreciate them more.

I am still pondering what it best, but what surprises me is saying to myself that I will not be tested does not give me any peace. Before, as soon as I made the decision not to have the test, I felt a huge sigh of relief. Now, i just feel uncomfortable with all the options. My husband and I really need to make a choice by tuesday and I am hoiping that I will know the best option for me. How did you come to the conclusion to have the test?

Damn, more questions ... promised myself I would try not to glean more info from you... failed miserably. I also liked your positive words and sayings in another thread, my favourite is;

discovery conisists of seeing what everyone alse has seen and thinking what noone else has thought.

I think I might of just given away the fact that I am a scientist and most probably, a self confessed control freak like you...

Elsaxx

DH
17-05-08, 10:53 PM
Hi Dave,

how was kayaking this morning (and how was the head?). Thanks for your reply to my questions - how old is your daughter? Spending time with our kids is very important, shame it takes something like illness to make us appreciate them more.

I am still pondering what it best, but what surprises me is saying to myself that I will not be tested does not give me any peace. Before, as soon as I made the decision not to have the test, I felt a huge sigh of relief. Now, i just feel uncomfortable with all the options. My husband and I really need to make a choice by tuesday and I am hoiping that I will know the best option for me. How did you come to the conclusion to have the test?

Damn, more questions ... promised myself I would try not to glean more info from you... failed miserably. I also liked your positive words and sayings in another thread, my favourite is;

discovery conisists of seeing what everyone alse has seen and thinking what noone else has thought.

I think I might of just given away the fact that I am a scientist and most probably, a self confessed control freak like you...

Elsaxx
Kayaking was good after I rolled 3 or 4 times... bit of duck poo and algae clears the head marvelously. :rolleyes:

My daughter is nearly 10, so the perfect age for spending time with. Last summer we went to the Ardeche in France on one of these adventure camps and had a great time; next week we're off to Cornwall for the half term; just trying to give her good times. :smile:

Now your decision.... toss a coin, heads for one, tails for the other. Before it hits the ground you'll know what you want it to be.

It's not scientific, but it works. :wink:

DH
11-12-08, 12:03 AM
Well, here I am again. Six or so months have gone by since I wrote the original post in this thread. And you know what? Nothings changed. People post up good news and I still think "why the **** did they get good news and not me"? Yeah yeah, I know that if I met them in public I'd be all happy for them, and if I met up with any of you that I know well I'd give a different story as well, but right here, right now behind the security and anonymity of a keyboard I don't give a stuff. Why them? Why not me? In the big scheme of things what I've got is small beer: I've got a faulty gene that one day (if medical science doesn't advance as I think it will) will mean I will deteriorate and develop HD. Everything else in my life is grand - a beautiful daughter, a wonderful partner, good health and all that bollox. But still it gets me down sometimes. Like now.

I think I may take a break from here for a bit. Sometimes I think I overdose on HD. I like the social side of things so I'll still do all that chuff... but being reminded of my own mortality? Nah. I think I'll stick to watching the feel good threads like Ashleeees birthday or Guru LadyCs fitness challenges.

Don't worry. Normal chirpy service will be resumed shortly. :rolleyes:

just1moreperson
11-12-08, 12:33 AM
I always have that feeling. I think it's natural to feel hard done by and wonder why they get the negative and you don't.

Surely I deserve a negative result also? of course everyone does. HD doesn't work like that. It's just cruel and heartless which is hard to take sometimes. Especially when you spend hours trying to understand why you...it's a question we can't answer and probably a question without an answer anyway.

HD don't give a hoot who it effects.

poppysox
11-12-08, 10:23 AM
Aawww Dave

Thinking of you and having read over the first post of yours on this I have reached the conclusion that when you get a Positive result your life NEVER returns to the way it was before testing. Sorry I cant say anything more constructive but I thinks that's the way it will always be unfortunately.:mad:

jaq
11-12-08, 10:54 AM
QUOTE=Ashlee Duffy;19493] ''I look at it as one less person in the world having to suffer with the disease''

Ash such a good point and that has got to be a good thing.

Yet is is hard to deal with our own situations and the damage that HD does to individuals and families.

I have not had the courage to test as yet but you do play the senarios through in your mind . If it was positive would I cope or want to throw myself under a bus if negative would I be cracking open the champagne.

If I was to test I don't know in reality how I would react.

For me HD has done its damage. Robbing my of my mother when I was 12 years old and not having that relationship or support that mothers and daughters should have. Taking way my uncle and leaving me with a vague memory of the man he was.

Watching my sibling with the knowledge that at 36 years old life is going to get worse and I am powerless to do anything to help.

I think for me HD is about all these losses and while without HD things might not have better they would certainly have been different.

All of affected by this whether with a positive or negative result face these losses. A parent certainly , siblings , cousins, children , husbands , wives opportunities etc etc and we all react in different ways.

I think it is good to be open about these feelings and if and when we meet again we know we can share these feelings with people who whilst total strangers have a complete understanding which is pretty extraordinary and for me something I treasure .


Jaq

Dolphin
11-12-08, 12:00 PM
Hi

Sometimes there's not much fairness in the world. But I try not to take it too personally if I can. When I used to read about people getting postive results, I used to sit in front of the computer screen and find myself in floods of tears for them and most especially for me. Reading about a good result is sunshine in comparison.

Maybe it's happened to teach me something, maybe it hasn't.

My partner said to me yesterday, there's a certain tension between me and my younger sister - and he found it difficult to identify. But it's real simple - she won't get HD - and my nephew doesn't have to face being at risk - and she's still not happy. I want her to be delighted. But that's the thing about life, it's a bit strange and people don't always behave as you expect them to...


Dolphin

millymolly
11-12-08, 02:09 PM
Hi all

When I read that someone got a negative result I congratulate them because I'm really happy for them, but at the same time, I always spare a thought for the unlucky ones that didn't ...

MM

Patrick
11-12-08, 09:06 PM
I think I may take a break from here for a bit. Sometimes I think I overdose on HD.

I think we all need a HD respite from time to time.
I hope you get over your lull soon, i've just come back!

Jan2008
15-12-08, 05:10 PM
I think we all need a HD respite from time to time.
I hope you get over your lull soon, i've just come back!

hi as you no mum had hd and now dek my brother has hd iam not very good putting down into words but i havent been tested and live in the unone for me thats how i cope ,
i just dont now how i would cope if it was me too ithink my hubby feels the same way i think he would be scarred for me ,
i remember when mum was first tested and we found out she had hd the hd adviser said this will change all your lives i was only 28 and i said to her its not changing this family we are strong and will stick together little did we know ,,, as i have got older and my child is now a woman and children could come along and i am 45 hd is always there in the back ground ,
when we where young nothing could touch us but our lives are changing from year to year ,, maybe in my mind i do know my future but at the moment cannot take the test,
when if ever do you go down that path and start to look to the future and want answers jan

Jan2008
15-12-08, 05:13 PM
Aawww.... Dave.... I know what u mean, obviously I haven't seen as many good results as you after only having the knowledge since the end of August, probably about 3 and I have thought "ohhhh I wish that was me, what would I have done if that was me... Wouldn't that be the best thing ever to be able to tell my Mum I wasn't gona develop HD" and yeah... It's get me thinking and a little bit ****** off.

But then I go back to my "well everything happens for a reason" :rolleyes: & I look at it as one less person in the world having to suffer with the disease, so am happy at that reason but at the same time thinking why not bliddy well me, what did I do that was so wrong to have to get it! But with Claire I have spoke to her quite a bit on facebook so really wanted a negative result for her, I guess it's different for people u don't know or speak to much.

Normal service will resume in the New Year for me, Xmas is enough to get anyone down, I hate it personally.

I remember the advice you gave me the other week though......

HAVE A DRINK FOR NOW EH :smile:

Yep, no pulling out of my B'day, Shaz too. :smile:

Take Care xx

hi ash glad you said you dont like xmas me too i just paint on a smile jan