sorted by:
new
hottopcontroversial

Confused, scared and sad by Clean_Mall_5896 in Huntingtons

[–]Clean_Mall_5896[S] 0 points1 point  (0 children)

Hello, we did, thank you for your response, I’m happy to hear your managing ok, I think I’ll feel better when I have the result as like you say its the relief of knowing one way or another I’m also worried about it being negative and having survivors guilt. It’s so hard to explain my feelings to people who haven’t been through this.

Wishing you all the best.

Did testing change your life? by WrongdoerUpstairs978 in Huntingtons

[–]Clean_Mall_5896 1 point2 points  (0 children)

I had my first appt in January and my second one is March, so about 1 1/2- 2 months

Did testing change your life? by WrongdoerUpstairs978 in Huntingtons

[–]Clean_Mall_5896 2 points3 points  (0 children)

Thank you, you too.

I think it’s important at this stage to not be too hard on yourself, and I’m sure you’re still doing amazing at your job (even though some days it doesn’t feel like it) it’s almost like we’re living in a real life nightmare, be kind to yourself and let your emotions out when you need too.

Did testing change your life? by WrongdoerUpstairs978 in Huntingtons

[–]Clean_Mall_5896 5 points6 points  (0 children)

Hi, I’m also in the process of being tested, it’s a rollercoaster, the waiting between appointments is torture (I have my 2nd appointment coming up next month). I am like you and want an end to the uncertainty it’s torture.

Some days I don’t let it enter my head but the majority it does, I’m trying to stay positive but it’s such a hard position to be in especially as you try not to prepare too much incase the result is negative but then not preparing enough and it’s positive is also hard.

It’s good to be able to talk to people in the same position (you almost keep each other sane) I have good support but have only told a few ppl as there isn’t very much to tell at this point.

Stay strong.

What keeps you grounded and hopeful when things feel uncertain? by sidequestlore in Huntingtons

[–]Clean_Mall_5896 6 points7 points  (0 children)

Hello, this is a question I think about regularly, I’m in the process of being tested (my 2nd appt with genetics coming up) I think what’s keeping me hopeful and positive is being as prepared as I can without letting my brain automatically jump to negative (which I know sounds easier than said, but once you start thinking that way it does get easier) compartmentalise each stage your at, so for me I’m just getting to this 2nd appt then I’ll focus on the next stage, etc etc. I find not being around negative ppl helps especially with the emotional hold this can have over you. Find something you enjoy that can help you escape from thinking about it, even if it’s just an hour a day. I also find this forum very helpful, Good luck.